2 Week Surgery Check Up

*WARNING – CONTAINS FOOT PHOTOS AND POST SURGERY PICS*

Happy new year all! This post should have been shared 4 weeks ago but in that time I have been doing more resting, some holidaying and a lot of christmassing. So forgive me!!


It’s been a quick two weeks since I had my toe straightening surgery.

What have I done in the last fortnight? Pretty much nothing. I’ve spent a good 22 hours of each and every day with my foot elevated on 3 pillows. I’ve ate, slept and lived on the sofa all day every day. I’ve done as little walking as I can get away with. Kept bathing to a minimum and have only ventured out of the house twice, once for a flu jab and the other time to purchase the all important Christmas tree. Walking hasn’t been easy for me. I often feel quite nauseous and I’ve taken to keeping the foot entirely off the floor when I’m walking with crutches as opposed to heel weight bearing. But other than that I’ve not had a lot of pain at all. I can feel that the pins are there if I try to flex my toes but other than that I would have no idea that they were there.

On Tuesday (3 days ago) I returned to hospital for my two week check up. I had possibly the loveliest nurse I’ve ever had.

She carefully cut through the many layers of bandage – I was shocked to see how slim my foot is without the bandages! Then using a cool water like solution she applied it to the dressings to help them be removed.

Early indications? Foot looks great. Better than great. Foot looks perfect.

She then carefully cleaned away the toes, they were all caked in congealed blood, and she got to work on removing the stitches.

The stitches on the top of the foot, where the joint was released, were dis-solvable, the stitches in the toes were not.

First the dis-solvable stitches were cut. She very gently pulled them upwards, a quick snip of the scissors and they were gone.

She then cleaned the toes before picking and cutting out the stitches. This was the part I was a bit worried about, I was quite fearful it’d really hurt. But no, just a slight jaggy pain where she was pulling it ever so slightly upwards, and that was it. There was nothing to worry about! Kind of like having a long leg hair pulled.

The toes themselves are looking great, she even used the word exemplary. She puts this down to my near constant bed rest. There’s no pain, no redness and no swelling. So if you’ve having toe straightening surgery my advice is to rest with your feet elevated as much as possible!!

The nurse then re-dressed my foot and gave me a tubigrip to wear over the top to keep the toes warm. She then got me another support sandal. Despite the fact the one I had was a ladies large, it wasn’t long enough to support my toes (FYI my feet aren’t giant, they’re a standard size 6!) so I was given a mens large (how we lol’d) and instantly the extra support felt fantastic. I was no longer having to work hard to keep the toes away from the floor, the pain and strain of which was probably adding to the nausea.

So where to from here? As it stands I’m not having the pins removed until the 9th of January, which is another 5 weeks. They may look to bring it forward a a week, inline with the initial 6 week plan, but as it’s Christmas and New Year, I may just have to get on with it for an extra week….which if nothing else means an extra week off of work, hoorah!

I’ve spoken to my biologic nurse at rheumatology and have been told to not start cosentyx again until January, which is exactly what I wanted her to say! So far I’ve not flared and I’ve had no return of my psoriasis. I have slight aches and pains but nothing I can’t cope with. So far so good!

Toe Straightening Surgery

*WARNING – THIS POST INCLUDES PHOTOS OF FEET BOTH BEFORE AND AFTER SURGERY, INCLUDING BLOOD AND PINS PROTRUDING FROM TOES. APPROACH WITH CAUTION*

Hey everybody!

Long time no speak!

As per the warning at the top of the post I’m going to be talking all about the toe straightening surgery that I had done 6 days ago. I am including photos because I know that in the run up to my operation seeing photos of the aftermath on instagram posted by people I know online made a lot of difference for me. It meant that I had some idea of what to expect and what was to come.

This is likely to be a super long post so I’m going to break this post up in to different sections starting with the very beginning. So get yourself a cuppa, and let me take you back to April 2016…..

In the beginning….

God created arthritis.

As I’ve said many times before, my first ever symptom of psoriatic arthritis was a swollen toe. The second toe on my left foot. The third toe followed at some point afterwards, as did toes two and three on the right foot. The pain started underneath the toe. I couldn’t put my foot down on the floor without feeling searing pain. I can’t quite remember when it happened, but at some point the toes started to bend upwards at the joint. The continued to bend and then they just didn’t move. The joint has fused. My toes had permanently bent upwards.

The inflamed bent toes were very, very painful. Often bright red and hot to the touch. This was eventually controlled with anti-inflammatories and cosentyx, but the bending never returned to normal. So even though I had no pain, the bend continued. Shoes became problematic. When the toes were swollen they did still fit in shoes. After they had started to bend, they didn’t. I bought my first pair of sensible shoes, skechers, and between them and trainers, have worn nothing else for the last two years. The not wearing shoes thing really bugged me. I didn’t want to be tottering about in high heels, I just wanted to wear something pretty. A ballet pump, even a pair of Vans sneakers. The knock on effect of not being able to have the choice to wear shoes was huge. My style changed overnight. No longer did I want to wear one of my vast array of pretty dresses because I didn’t have the shoes to wear with it. I took to wearing black trousers and a sweater. This has been my uniform for many years now and I long to be able to wear a dress and feel more like myself again.

Podiatry

On my first appointment to rheumatology I was referred to physiotherapy, occupational therapy and podiatry. The first two I only required one appointment at each but podiatry I attended a fair few times. The first few appointments were to make me inserts and insoles to try and support my feet, and I was given the green light to have my toenails removed. On a further visit to rheumatology in December 2016, my specialist said that he was happy to have me referred to orthopedics with regards to having the toes straightened. My podiatrist (a horrible horrible woman) said that she would do all she could to make sure I didn’t get the surgery because I hadn’t taken her advice to buy flesh coloured granny shoes.  She told me that my toes were not the worst that she had seen and that I didn’t really have anything to complain about. I knew my toes weren’t the worst, but they were still causing me issues. With hindsight, I should have made a formal complaint against her. I didn’t, but ultimately, I got what I wanted.

Orthopedics – Appointment 1 – December 2017

It would be one whole year before I was invited to go to Woodend hospital in Aberdeen to meet with the orthopedic consultant. I met with Dr Sam Roberts who had a good look at my feet and agreed that the second toe on the left foot was suitable for straightening. I was so relieved! I asked him if I could skip straightening and go straight for amputation. After he nervously chuckled, he realised I was being serious. This request was declined and I was told I would have to try straightening first.

Orthopedics – Appointment 2 – 28th August 2018

Time passes. I age another year. I finally get the follow up letter inviting me back to Woodend for pre-assessment. I meet with the nurse who takes down all my vital details and meet with Dr Roberts again, who looks at both my feet and agrees that not only will I have the surgery on both toes on my left foot, one of the toes on my right was suitable as well! I am ecstatic by this news! One step closer to being my old self again! I’m not given a firm date for surgery but am told it could be anytime between the next day, and anytime up to 6 weeks time.

As we’ve learnt with orthopedics, nothing seems to run on time. The uncertainty of not having my surgery date caused me a lot of issues with my employers and I’m forced to make the call to the department secretary to see if there’s a date yet. There is. Monday 19th November 2018 at 7.45am.

That’s it sorted then. I do the necessary at work, and due to the way my job is, I say my goodbyes to my wonderful project because when I do eventually return to work in the new year it will be to a whole new project with a whole new set of people. It feels very much like the end of an era. Time wise it works out quite well as I was due to finish up at the end of December, we’re able to just pull my end date forward a few weeks.

The Night Before

The surgery is performed as a day case – go in in the morning, operate, go home at some point on the same day. I was advised however to have an overnight bag packed just in case of delays or anything prevented me from going home. Jack and I had been away at the weekend but we get home early evening, I get my bag packed, set an early alarm and get a good nights sleep.

Surgery Day

As I was having my surgery in the morning I had to fast. No food from 2.30am, and no liquids from 6.30am. As anyone who knows me can confirm, this was the part that filled me with dread. Not only do I love my food, I drink at least 4lts of water a day, not to mention my love of constant cups of tea! I didn’t really think anything through. Instead of having a late night snack, or even a mini meal, I had my last bite of food at 18.30 on the Sunday.

I am hungry. Very hungry.

Within the first few minutes of arriving to the ward I feel weak with hunger.

The ward nurses get me checked in and tell me I am 3rd on the list. This doesn’t sound too bad, does it. 3rd. Better than 33rd. I reckon I’ll be in theater by 11am. Stop thinking about food Rebecca.

I’ve bought with me my support team of Jack and my Mum. I’d have bought Molly-Cat if I thought it was allowed.

Dr Roberts arrives and tells me that they’ve lost my consent form. I say that it was both feet and he disagrees, saying he thinks he only said the left foot to be done this time and that he couldn’t even check the consent form to see what had been agreed…how convenient. I was a bit annoyed at it only being the one foot, although this did make life after the op a fair bit simpler.

Shortly after this, the lead anesthetist arrives at my bed. He explains to me that there are two options regarding my anesthetic – general, like I believed I would be having, or the more localised nerve blocker.

He explains to me that the nerve blocker anesthetic is what he advises patients to have. Instead of going fully under, just the leg is injected. This means that there are fewer complications and a better recovery time. I am instantly freaked out by this. “I DON’T WANNA BE AWAKE! I DON’T WANNA SEE! I DON’T WANNA HEAR A PNEUMATIC DRILL BREAKING MY TOES!” We’ll heavily sedate you, he says. Oh. That makes sense. I umm and ahh about it for a few minutes. I’d never been under a general anaesthic, and whilst I’m a little apprehensive about it I do like the idea of not being completely knocked out.

I ask my support team for their advice. They say it’s entirely up to me. Which makes them the worst support team ever.

I decide that having the nerve blocker IS the best option, and agree to go ahead with it.

Time passes. Quickly at first. But by about 11am, I’m getting so hungry I declare I would happily punch my mum in the face for a bag of bbq beef hula hoops. She agrees this is fair.

The physio arrives and presents me with a brand new pair of crutches and a really super sexy moon sandal. She teaches me the basics of how to walk on crutches (weight bearing on the heel) and I pretend it’s a machine gun.

I feel so hungry I half expect Bob Geldof to burst through the doors with Bono on his arm singing “Feed the world” and sharing a text number for people to donate money to for me to eat. The food trolley was so near and yet so far.

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#saverebecca

Instead of sitting or lying on the bed like a normal person, I decide to lay across the bed sideways, with my head hanging off the edge. Why? I’m not sure. Hunger maybe made me do it.

Lunchtime comes. THAT’S A JOKE. No food for me. I’ve now been here long enough that I could have eaten up until 11am like the afternoon patients. The little old dear in the bed opposite me returns from her carpel tunnel surgery and is given a cup of tea and some toast. What I would do for some toast right now. A short while later however she is very sick and suddenly I don’t want toast. Who am I kidding. Of course I want toast. I’d even eat a block of butter right now.

A new arrival turns up in the bed next to mine. Her name is Rebecca. She is a heroin addict. She’s not a very nice person and it’s not a nice situation to witness. All I will say is that the staff on the ward dealt with her aggression admirably and under no circumstances should these wonderful NHS workers, or anybody for that matter, have to deal with such utter BS.

Anyway. I digress.

I’m hungry.

Time passes slowly. We’re all getting hungry and cranky. To pass the time, Jack suggests we talk about our favourite foods. This starts off a great idea, but when moments of total silence arrive, and each of our tummies growls uncontrollably and loud enough for people two miles away to hear, we realise this probably isn’t the game for us.

Finally, at 14.15 the nurse arrives and tells me to get my gown on, I’m going down! Jack ties the gown on me so tightly I think I’m going to choke but hey, it’s better than it falling off. I’m inspected for any last sneaky bits of metal I might have on (hello hair clip) and in to the bed I get. Glasses come off and I’m wheeled out of the ward. I say goodbye to Mum and Jack and the two old ladies in the beds opposite me.

Not having glasses on freaks me out a lot. I’m talking to different nurses and honestly don’t know if I’ve seen them before or who I’ve been talking to.

The Anesthetic Room

I arrive to the wee room attached to the theater to be met by lots of people in green scrubs. The anesthetist from earlier is there and confirms to the group I’m going with the nerve blocker. I’m asked how I’m doing and all I can say is that I’m so hungry I am literally half the woman I was when I arrived this morning. I explain to them all that I can’t see them, which gets more laughter. It’s hard being short sighted.

The canula goes in to the back of my right hand. I was apprehensive about this. I’m not great with needles and I also didn’t know what to expect. Would it hurt? Would I know it was there? It doesn’t hurt at all. It’s taped down and I’m told the first thing to go in will be antibiotics. So far so good.

The next thing to go in the canula is the sedative. The gown is then undone slightly at the back and I’m asked to roll on to my tummy. Which way do I roll, I ask? More laughter, it doesn’t matter they say. I roll over and they get to work on my left leg, injecting it quite a few times with the anesthetic. A few minutes later they ask me to roll on to my back. I can feel the sedative has kicked in and I feel woozy. Once on my back they start injecting the front of my leg. This feels weird. My legs starts to feel almost ‘wooden’. It’s a very strange sensation. We wait a few minutes and then the tests start to make sure I can’t feel my foot. The little pin stick comes out, and a spray bottle full of icy cold water.

They prick the toes on my right foot, yep I can feel it. They then spray my right toes. Yep. I can feel that too.

On to the left foot. Can you feel that?

Errrrr yes.

They try again.

Actually yes, I can feel it all.

They didn’t believe me initially I don’t think. Dr Roberts came in and said we’d give it a few minutes more for it to kick in.

I got wheeled in to the operating theater and was administered another dose of sedatives. My toes were prodded, poked and sprayed again and yes, I could still feel it. I was described as ‘small but hardy’ and before I knew it, the words ‘general anesthetic’ were mentioned. It was popped in to my canula….and I awoke over 2 hours later.

The Operation

So what happened? Well, I’m not exactly sure. There are some things in life that you’re best not to ask too much about, and this was one of those things. I know that the nerve? The joint? That something below the toe was cut to release the joint. I know that my toes were so bent that there was no hope of any future flexibility, and so pins and wires were put down the toes to keep them straight. But other than that….I’m not so sure. Ignorance is bliss.

The Recovery Room

I woke up some time later with an oxygen mask on. I think I fell back asleep a few times. I went in and out of sleep for a while. But when I did fully come to, a lovely nurse started to ask me questions about my engagement, she was talking about it in such detail….I can only think that I had woken up previously and started to a great big conversation about how it all happened. I had heard horror stories from work colleagues about when they’d come round from general anesthetic to find they’d been talking about wildly inappropriate things, so to find out I’d been waffling on about the proposal was a great relief! Another nurse in the room started to speak with me in French (I assume I greatly exaggerated my French speaking ability whilst under the influence) and I bid them both a fond farewell, screaming at the top of my lungs “j’ai faim!!”.

Return to the Ward

Back to the ward I was wheeled. The two old dears had been discharged and Mum and Jack were chuffed to see me. I explained to them the anesthetic debacle and we all laughed that if it was going to happen to anybody, it would have to be me.

I was a bit woozy initially but I felt ok. I was offered toast and tea and I was so happy I could have cried. Jack kindly buttered the toast for me and it was the tastiest toast I’ve ever had. When I was asked a short while later what meal I wanted, I declined dinner and opted again for toast. Plain food. I had seen the old lady being sick earlier and figured I shouldn’t be introducing too many flavorsome foods just yet. A short while later and the pain in my toes was increasing. It wasn’t a constant pain, but coming in waves and getting worse each time. The nurses gave me a syringe of liquid morphine. I’ve never had morphine in any shape or form before but my god, it was delicious. About an hour passed and I decided I was well enough to get up and go to the toilet. I got the green light for this from the nurses, and with Jacks assistance, slowly got myself up on to my crutches and got to the toilet. When I was on my way back to my bed, about 2ft away, I became very hot and clammy, my hands got pins and needles and a huge wave of nausea hit me. I dropped the crutches and stumbled painfully back on to the bed, screaming at Jack to get me a bowl whilst barking at my Mum to tie my hair back.

I was violently sick 4 times. The only positive about this experience is that the sick tasted exactly like buttered toast. The nurse administered anti sickness medication in to the canula.

I felt awful. Really horrendous. I was reassured that this was normal, that it was ok. Lay yourself back down, keep your foot elevated and give it a couple more hours. So I did. It was now 20.00. I felt absolutely fine in myself. I didn’t feel sick and I didn’t feel woozy. My Mum had even said she was impressed at how well I’d come round. I said I felt well enough to give walking another go. I was desperate to get home at this point. I decided to try and get to the toilet and back, if I could manage that then I would ask to be discharged.

I slowly sat up, put my feet on the floor, got my crutches and off I went.

This time I only got about 4 steps away from the bed before I was on the verge of collapse and threw myself back on the bed again, head in a bowl, this time in floods of tears at just how sick and unwell I was.

The nurse came back and I was told that if I wanted to be discharged, there was no possibility of me being readmitted. As much as I wanted to go home, I listened to her advice, as well as the support team, and knew I had to spend the night. Thank goodness I’d packed that overnight bag!

Mum and Jack sorted everything out for me, making sure I had enough water and that my book and phone were within reach, and off they went.

I’d never spent a night in hospital before. As chance would have it, the ward I was in was completely empty. I was the only person in the room of 6 beds, and somewhere far away down the corridor there was only one ever man in ward 9. Everybody has told me that this simply never happens and that I was so lucky.

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Mum and Jack left me at about 21.30. I just rested, texting my sister who was on nightshift as a midwife and tried to settle down. The nurse on duty came to see my multiple times, explaining that she wasn’t surprised I was doing so badly given the fact I’d had double anesthetic given to me. By midnight I pressed the buzzer and told her that I wanted to try going to the toilet again. I felt absolutely fine, and crucially, I needed a wee. She helped me to get my shoes on, and slowly we walked towards the toilet. Same scenario as before….just a few steps away from the toilet and I started to collapse. I fell in a heap. She helped me up, and I got myself on to the toilet. She pulled the cord to call for another nurse. As I was trying to wee, I started to be sick all over the floor. And typically, try as I might, no wee came. The two nurses wheeled me back to bed and got the cool air fan on my back, as I lay in a heap, sobbing again. My blood pressure and heart rate was taken, all fine. I really did feel fine….apart from when I was moving. Another lot of anti sickness meds given, and the nurse came back with a cup of tea, two rich teas and a chocolate biscuit. I probably should have given the choccy biscuit a miss but I couldn’t resist.

Keeping my foot elevated and with the duvet stopping at my ankles, so not to cover my pins, I managed a few hours sleep, waking at 6am. I had drastically limited how much water I was drinking through the night, knowing that I couldn’t make it to the toilet. But now I really did need a wee. The nurse said that instead of me attempting the toilet again, she would bring over the little toilet on wheels for me (Side note – how amazing is one of these, I need one of these in my life so badly) and wee I did. As I slid myself from the seat back in to the bed….I hit the bed again. Hot clammy and being sick. I really didn’t see a way home.

The nurses changed shifts and I fell asleep for another half hour or so. The breakfast ladies came round and didn’t even need to ask me how I took my tea. They gave me extra tea and extra toast.

During all of this, I didn’t even really think about the pain in my foot. But it was sore. Not excruciating, but pretty damn painful. I was offered pain relief but I declined. I didn’t want another shot of morphine in case that added to my general wooziness. I had had paracetamol and dihydrocodeine during the night and I knew that once I was up on my feet again I would take them and they’d do the job.

Dr Roberts and his surgeon apprentice did their rounds early on and came to apologise to me for the anesthetic debacle, and that they weren’t surprised to see me there that morning.

I carefully, and slowly, managed to dress myself. This was progress! Mum and Jack arrived at 8.30 and over the next hour I slowly sat myself up straighter and straighter.  I wanted to edge myself in to it and not give myself a sudden rush of blood to either the head, or the foot. By 9am, I had touch down. Both feet on the floor. I just sat there like this for about 5 minutes, allowing my body the time to get used to it. And then I attempted it….I walked to the toilet. And most importantly….I walked back. No nausea, no collapsing, no tears. I was a tad unsteady on my feet, and they did hurt, but I felt confident enough to go home.

My discharge papers were signed, a wheelchair found to enable me to comfortably get to the car in the rain, and away we went.

Home at Last

Jack dropped us off and went off to work, and Mum helped get the flat set up for me. She made up the spare bed and a temporary sofa bed for me to spend the day. We both napped (this is why I love my Mum, she loves a nap) and I kept my foot elevated all day. Apart from walking to the bathroom (that seems to be the only walking I’ve done all week), I did absolutely nothing. I know just how fortunate I am to be in this position, to be waited on hand and foot. Molly-Cat was ELATED that I was home, however, she took quite an interest in my pins. Like, really interested. She kept trying to get close enough so she could sniff them. She was banished out of the lounge during that day so that I could rest and recover without the fear of Molly eating my blood. Towards the end of the day, when her crying got too much, we let her in and after some good sniffing, she did seem less interested in them, and just snuggled in with me on the sofa. That evening I slept in spare bedroom, with the door shut tight, keeping Molly out. We’ve had many guests stay over in the spare bedroom and she has never shown any interest in getting in the room to be with them, sleeping in bed with Jack and I. We figured that she would sleep with Jack as normal and be unaware of me just a few feet away.

She wasn’t.

She’s not easily fooled that Molly. She cried. I don’t just mean the odd mew. I mean she cried and cried and cried. Sat outside the spared bedroom door, begging me to let her in. I had no choice. In she came, settled down high on my chest with her face so close I could taste the dreamies on her breath, and so we slept.

Since then, I’ve taken to sleeping all night on the sofa. It’s easier for me. No need to get up and remake up the sofa with pillows and duvets, I just stay here, festering in my own juices all day every day.

The Aftermath

The first few days I was incredibly sleepy and sore. The pain however has subsided immensely. Now it just feels uncomfortable as opposed to painful. Hot and itchy. Having said that, I haven’t gone outside or done more than an average of 800 steps a day yet, so that could change everything.

I was worried that I would be painfully aware of the pins. I’m not. I’m not even that freaked out to look at them. Sure, they look like little kebab skewers and Jack wants to stick peppers and onions on them, but all things considered, it’s ok. I’ve even lightly touched them a couple of times, when I’ve gone to scratch my toes, and it’s been ok.

The bandages don’t get changed until 2 weeks after surgery (at least I think this is what the follow up appointment is for) so they are very bloodied, which surprised me, I thought they would get changed, but I guess the wounds shouldn’t be agitated any time soon.

I had my first bath on the Friday, 4 days after my surgery. I’m fortunate enough to have a kidney shaped bath that has a wee shelf in it. With the help of a pedal bin bag and two pegs, I was able to cover the left foot, carefully get in to a shallow bath with my right foot, and rest the left on the shelf. Sadly though I had chucked away my last disposable razor and am now so hairy Molly thinks I’m her actual cat Mum. Jack is thankful we’re not sharing a bed. Washing my hair was not quite so simple. I didn’t want to kneel on the floor over the bath in case I stubbed the pins, so with the use of a camping chair and two cushions, I managed to sit and lean over. It wasn’t comfortable, but I’m only looking to wash my hair once a week so I can cope.

I’m taking fewer and fewer painkillers now, which I’m pleased about and I think in a few days I’ll be confident enough to sleep with the duvet over my toes. I’m going to be completely off my feet for another full week. It may seem extreme, keeping it elevated for two weeks but I don’t wanna dick around with my recovery. I’ll be having the pins removed at 6 weeks, and will be spending the weeks between now and then with my feet up as much as possible.

During this time at home, Molly has not left my side. She is a Mummys girl anyway, but she really won’t leave me alone. She knows I need extra love and cuddles, so together we spend our days cuddled up on the sofa watching Netflix (The Chilling Adventures of Sabrina is AMAZING) and reading (Bruce Springsteen- Born to Run). Mum has come over every week day to look after me and Jack and I have enjoyed the weekend watching football and playing board games.

I have no idea if all of this will be worth it, but let’s hope so.

I did warn you it was gonna be a loooooong one.

I’ll provide another update after my nurses appointment on December 4th.

I apologise for the foot photos, but you were warned.

But for now, I’ll say goodbye. I’m gonna get a cup of tea (well, I’m gonna ask Jack to get me a cup of tea) and then we’re gonna settle to watch David Attenbouroughs Dynasties.

 

TL:DR

Toes cut and pinned back together.

 

 

 

 

Happy Anniversary to me!

2 days ago was my one year cosentyx anniversary.

I have successfully administered 15 cosentyx injections.

Three days after my first injection my scalp psoriasis had almost completely cleared.

By the end of week one my scalp was entirely clear and my arms were about 50% clearer.

By the end of week three I had only a couple of patches left on my legs.

By the end of week 4 I had only a tiny amount of dry skin, not psoriasis, on my legs.

My knees were better. My toes were a bit bitter. My fingers were improving week after week.

The scarring on my legs eventually faded.

Over the months I have cleared out my bathroom. First the tube of sebco, the one I used to get through every 4 days was binned. Then the medicated shampoos. Then the numerous creams and ointments and moisturisers, and only last week I binned an out of date tub of coconut oil.

Psoriasis wise, having a clear scalp was the most life changing improvement from cosentyx. My scalp psoriasis controlled every aspect of my life. I became aware of it when I was about 14/15 years old in Malta and I realised had a small ‘bite’ on my scalp. I thought it was a mosquito or something and didn’t think too much of it, but over time, it got worse and worse and at some point I must have realised it wasn’t just a bite. I went through my late teens without seeing a GP. I worked a series of jobs that would often require me to wear black tops and it was pretty embarrassing. Constant flaking. But I don’t remember my scalp being super bad. It was probably just a few small areas of psoriasis. I could cope. Life went on.

When I moved to Aberdeen in 2008 my scalp must have become so bad that I made my first ever GP appointment for it. I remember the doctor looking at my scalp and exclaiming he’d never seen anything quite like it and that the plaques were larger than cornflakes. That description of them has never left me. Nor did it ever put me off eating cornflakes. I was prescribed cocois and told to sleep with it on my scalp over night. I stank. Rotten eggs. It was horrible. I sound so attractive. But, to some extent I guess it must have worked. I don’t remember being chained to the shower, I was able to have lots of very drunken nights out and I don’t remember being in constant pain from it.

I don’t remember it being really bad until about 2013. When suddenly it took over my life. My scalp was covered from the base about 2/3 up the back of my head. I went from treating it once, twice a week, to every single day. I went from being able to manage it to having to take days off work because it had become infected. Holidays would be dictated my by scalp routine. A family holiday to Florida not enjoyed to its full extent because I couldn’t jump in the pool and frolic with everyone else because I couldn’t get my hair, and therefore scalp, wet. I could only get in the pool when it fell in to the hair wash routine. Being in Italy and having an early night every other night so I could get back to the hotel and put the 3 hours aside I needed to keep on top of it.

I have, it has to be said, the most patient, understand boyfriend (well, fiancé now!) in the entire world. A man who would cut evenings short with me so I could get back to do my scalp. A man who wants to take me back to Florida so I can jump in the pool without a care in the world.

My joints have improved too. I have no active inflammation. None. Nada. Nothing. This isn’t to say that I am without pain, I’m not. I still suffer from pain in my feet and recently in my fingers and hands. But I am moving. I can walk without pain and move around. I recently spent a great afternoon with my nephew, rolling around on the floor with him, ducking down low to hide behind things and dance around with him. A year ago this would have been impossible for me to do. When I held him for the first time I was covered in psoriasis and I struggled to hold him confidently, my pain was so bad I thought I was going to drop him.

The fatigue still pops up every so often but it’s never connected to cosentyx. The fatigue I have now occurs when I’ve overdone it, as opposed to when I was on methotrexate and the fatigue was so bad I was pretty much in bed for 4 days trying to recover.

Not having scalp psoriasis still blows my mind, almost one year on. To know that I have gone almost 365 days without it. To be able to sit on colleagues chairs at work without leaving a trail of flakes behind me. Not having to sit on a scarf on my own chair. Not having to vacuum after myself every moment of the day. Cleaner house, cleaner car, cleaner desk space.

I struggle to remember now how it felt. How painful it was. How inconvenient it was. It feels like a distant memory, one I hope to never revisit.

Having said that, over the last few months I have started to wonder if the cosentyx is becoming less effective. My fingernails are showing signs of developing psoriasis again. My fingers are hurting. The underside of my toe joints starting to feel a lot like the very pain that started my whole arthritis journey.

I was due to inject on November 5th but because of my upcoming operation I but I have skipped this one, and maybe the next, injections. This fills me with dread. I don’t know if or when I will flare, but I’m expecting it. I know I’ll hurt. I know it’ll be difficult. But at least by not being at work I can ride the pain out at home.

I have what I think is a small patch of psoriasis already returned on my arm and my feet don’t feel like they have as much ‘movement’ as they did before.

My toe straightening surgery comes next. I was denied the surgery so many times over the last two years because methotrexate and sulfasalazine weren’t controlling my inflammation. I am able to have my surgery in two weeks time because cosentyx is doing what those two couldn’t

When it comes to injecting, I am the living embodiment of ‘If I can do it, anyone can’. I was petrified of needles. Even just thinking about one was enough to make me almost faint. But now I can inject without a seconds thought. I know that cosentyx is the only biologic I’ve had but I understand it’s one of the (if not the) least painful injections. I never thought I would find myself looking forward to injecting myself, but I do.

In the one year since I started cosentyx I completed the London Marathon, I turned 30 at Disneyland Paris, I saw the Northern Lights in Iceland, I went to Holland to see my best friend for the first time in 9 years, I’ve just returned from another trip to Paris and will be heading back to Holland shortly. I’ve been to see my favourite bands live, seen shows I love at the theater, spent time with my Sister and been on days out. I got more involved with Arthritis charities and continue to work as an advocate for those of us with psoriatic arthritis.

It’s not been easy.

But it’s been ok.

 

Anxiety Anxiety Go Away

It’s not just you.

I don’t know what the title in the graphic means either.

Anyway. Let’s get straight to it.

I usually spend my time at work doing anything that isn’t work related. 25% internet trawling. 25% instagram. 25% messaging people. 25% eating.

But the last few weeks I’ve gone a bit quiet. Both online and in real life.

I feel like I’ve been falling apart. Spiralling out of control. Overwhelmed by simply being alive.

Why the ‘life falling apart’ feeling? Why so overwhelmed?

Why the constant state of anxiety? The panic attacks. The not sleeping. The being so worried that I’m not eating. By choosing not to eat to try and regain some control. The not replying to people for weeks. No real activity online. The calling my Mum at all hours of the day and night crying. The snapping at Jack and being so anxious I don’t want to look him in the eye. The taking time off work to stay home in my dressing gown, watching back to back Real Housewives wondering if I could just stay inside and never have to go in the real world ever again.

It’s a combination of a few things. Some real, some not so real.

Redecorating the flat, 4 rooms at the same time, is apparently quite stressful. Things everywhere. A state of chaos. Workmen coming and going. It unnerves me greatly, the loss of control over my living area. Not knowing where things are. The order of the flat gone. My mind works in such a way that if the bed isn’t made ‘correctly’ in the morning before I go to work, it genuinely makes me anxious. Jack often tries to make the bed and I have to remake it. I know how ridiculous that must sound, a shoddily made bed making me anxious, but it’s true. My flat is my safe orderly space. Everything in the flat has it’s own place and when it’s not there, it just adds to making me feel anxious. I sound like a terrible person to live with. I’m sure if I asked Jack he would say that my sense of order drives him crazy but that equally,living with Monica from Friends does have it’s benefits. Like a well made bed. Last Monday the work was finished in the bedroom. As soon as the wardrobe went back up and my books reappeared I sensed a certain (small) amount of calm returning. The books aren’t back in their ‘right places’ just yet, and the clothes aren’t in correct order yet either (FYI, the front of each piece of clothing has to face the right, and it goes jumpers > long sleeve tops > short sleeve tops, etc. It’s very organised) but it’s getting there. The whole redecorating thing should be finished in a fortnight. Well the first stage anyway.

So why the sudden rush to redecorate? I mean we’ve been in the flat two years and done very little so far. Well our happy block of four flats has changed somewhat. Without going in to detail and upsetting myself,it sets me on edge. I don’t like confrontation, but I mean, who does. Mainly, I can’t cope with confrontation. With people trying to encroach on my safe space, people trying to dictate how we live. People who made me so worried and upset that I made my beautiful little Molly-Cat sleep in the lounge for a few nights so that I didn’t have to spend the night awake, worrying to the point of tears that she would wake them up (I know how stupid this sounds but this is one of their complaints). A cat who, when shut in the study, or even the wardrobe overnight, just settles down and sleeps. But a cat who, when shut in the lounge with food and litter tray and scratching posts and cat beds and blankets cries and cries and cries and cries and cries.

I am wanting desperately to leave the city that I have now spent 10 years and 12 days living in. A city that has never made me happy. A city I was only ever supposed to live in for 4 years. A city that over the last few weeks has left me wondering why I am still here. Seeing most of my friends move away. Longing to be one of them. Trying to work out the master plan to move to Edinburgh. Knowing that if we sell the flat we can buy a house there. Knowing that we don’t want to sell the flat.

My work situation is….interesting right now, and no, not just because I spend my time not doing the work I’m paid to do (this is a slight exaggeration by the way, I do my job and I do it well). On the cusp of needing to find a new job. Interviewing for a new job. Interview going so well the people were arguing over who’s team I would be joining. Waiting for the official offer but knowing that the job would require me to start mid November. Mid November being when my surgery is going to happen. Knowing that I can’t ask to postpone my surgery because I have waited so so long for this that I don’t want to run the risk of going to the back of the queue. Knowing that I’m going to have to explain that I can’t start until New Year and hoping they understand. Knowing that as it stands come New Year I won’t have a job.

A few weeks ago my health took a bit of a negative turn. Lots of doctors appointments, lots of tests, the dreaded C word getting mentioned. A week in limbo waiting for the results. Obsessing over everything in my mind a hundred times a day. Worrying about scenarios that weren’t even real. And then finding out I wasn’t going to die and trying to get my head around the fact that whilst ill, I will be fine, is hard for someone who worries about everything. So. I’m going to live. Hoorah. Cosentyx is still keeping my inflammation at bay, but I hurt, I ache. Fingers hurting and more strangely, the tops of my hands. I don’t know how to explain it other than sore. On the cusp of a flare. My knees are hurting again and whilst I know it’s my own fault for running, it doesn’t make the pain any more acceptable. I struggle to medicate to control my pain levels. Paracetamol doesn’t do anything. OTC cocodamol does little. Pharmacy strength cocodamol helps but leaves me sleepy. Tramadol  makes me high as a kite. I’m also totally the kind of person to get addicted to prescription painkillers. I know this because I know. So I go through the work day with no pain relief. I go through the weekend with no pain relief because I can just mope in the house and suffer with it.

Everything at once. I just want to run away from it all. Curl up in a big ball and just stay under the duvet with only my cat and a good book for company. Is that too much to ask?!

I feel once again my ability to cope with life, in even it’s simplest forms, slipping away. The last time this happened I found myself crying to a GP I’d never met before begging him to put me on anti-depressants. I’m about a week away from going back to see him to ask him to put me on them again.

I can’t be the only person who sometimes get overwhelmed by life can I? I never used to be like this. Not to this extent anyway. Since I got sick I’ve definitely noticed a change in who I am and my coping abilities. Or lack thereof. I’m grateful for the fact that I’m able to talk about this, that I don’t keep it to myself. That my family listen and support me. I’m thankful that there are people in my life, even if just on the periphery, who understand me. I’m fortunate to have a cat who provides me with unlimited headbumps and cuddles.

I’ve always been a lover of lists but to try and cope with all of this my list making has gone in to overdrive. Everything from feed fish to paint lounge wall to wash hair. Things I don’t necessarily need reminded to do (although I did recently just go 5 days without washing my hair trololol) but writing down everything that needs doing helps me to get my head focussed for the day or week ahead. I used to run to help clear my mind but that isn’t something I can do right now. IT SUCKS.

How do you all cope with anxiety? What helps you to refocus and worry a bit less?

I’ll stop waffling on now. It’s not all doom and gloom. I return to my spiritual home of Disney in 4  and bit weeks. My writing is soon to be published in a few big medical journals. I bought the snuggliest teddy bear coat known to man yesterday and It may even take the place of my beloved, but ratty, parka jacket in the ‘you’ll have to prise it off my cold dead body’ stakes. I’ve read the 15 books I planned to in my Goodreads challenge and have now upped it to 23 (Are you on goodreads? If so find me under the username of thenorthgirl ). The weather is cold which means heating and blankets galore, the leaves underfoot are gorgeous and my best friend is coming up from London to stay at the weekend, which means a road trip to visit the new V&A in Dundee.

My promised blog post (which involves ya gal on film) is delayed for a few days until I get my shit together and am able to do it justice, so I’m gonna stop making promised on when blog posts get published cos I clearly can’t keep them! Unless I start writing it down in my to-do list….

I’m not slow, I have arthritis.

I do this every time. I say I’ll go back to blogging more regularly, and then weeks, months, a millennia pass and still, no new blog posts.

So. What’s been going on?

Lots! But where do I begin? Logic says starts at the beginning but that’s easier said than done! I’ll break it down in to sections.

Running

I returned to mass participation running!

First up, The Great Aberdeen Run 10k.

Aberdeen is not a city suited for a great run. It’s no Edinburgh or Glasgow that’s for sure. There is little more disheartening than running in the rain through Aberdeen harbour. If you know Aberdeen then you’ll know the harbour, like most I suppose, is hardly picturesque. Crowds were non-existent away from Union Street and I didn’t know how grim it would be to run through the Mounthooly underpass. Turns out. Very.

 

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Anyway I digress. I ran (kind of) a 10k and I didn’t die. My left knee started to hurt at 3k and I blistered pretty badly on a foot, but I did it. Yay. And I beat my verrrry slow target time by 3 minutes so every cloud.

This followed a fortnight later by The Great North Run.

I love the Great North Run. Geordie blood running through my veins, you’re hard pressed to find a better crowd.

I’ve never eaten so well during a run. The usual suspects, jelly babies and haribo, featured heavily. But I also enjoyed 6 ice poles (ice pops? I don’t know), a strawberry split, biscuits, handfuls of celebrations and lots of grapes. I may be the only person to finish a run heavier than they started.

The Great North Run was the first race that I completed after my diagnosis. I had hoped then to make a decent time but I failed. So this race I was adamant I was going to not only better that previous time, but I was going to make the target time!

Turns out not only did I not make my target time…I was actually 5 minutes slower than the initial time I was so upset with! But hey that’s life! That’ll teach me to set targets for races that I haven’t trained for!

Body felt battered and bruised but 8 days later and I’m pretty much back to normal. My knee was heavily strapped and held out and I was a bit sore muscle wise but that’s because compared to my old self I’m terribly unfit.

Where to from here?

As a Great Run member, I already have a place for next year’s Great North Run, and maybe, just maybe, I’ll train for this one and actually make the target time I’ve never managed to achieve broken bodied. I’ll find out in a few weeks if I’ve gotten a place for next year’s London marathon. I’m hoping as well to take on my first ever cycling event, Ride London next year. I feel like my ability to continue running is coming to end. Whilst I can talk about not wanting to beat times and how I’m grateful just for the opportunity to run, I’m starting to realise I miss the old Runner Rebecca. I’m not her anymore. I’m never going to make the 110 minute half marathon mark I was working so hard towards. And maybe I’m finally ok with this, with running less and less, to the point where it becomes something I used to do. I know I have a few more half marathons left in me, and one more full marathon, and after that….maybe I’ll be done.

 

Health

I guess the biggest thing to have happened over the last few weeks is that I got the green light for my toe straightening surgery!!!!

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I went in to the appointment expecting it to be just the one toe but my amazing consultant gave the green light to have all three toes done! So two on the left foot, one on the right. I’ve never been under general anesthetic before so I’m sure in the days leading up to it I’ll be my usual dramatic self, fearing the worst! The good news is that the operation (mid November) falls after my next holiday to France. The bad news is that it falls just a few weeks before my trip to The Netherlands, so I’m looking forward to experiencing Holland for the first time in a wheelchair! I know that may sound a bit OTT but I’m not sure how well I’m gonna shuffle on crutches with both feet out of action. Jack is less keen for this idea but we both know that there is no better place for me to be ‘disabled’ then The NL.  Am I looking forward to 6-8 weeks off of work recovering? YOU BET I AM!! So many people saying to me that I’ll get bored etc etc, these people don’t know me at all. I have so many projects and tasks I can do in this time off. Which translates as will spend all day watching Real Housewives from the sofa under a blanket with the cat for company and regretting nothing.

Toes aside, I’ve been in and out of the doctors a few times over the last few weeks because cosentyx has been giving me a few tummy problems I can’t shift (we’re all friends here). My first lot of test results came back fine last week, just waiting for the second lot. We’re hoping it’s just regular IBS induced by my medication but getting tested for a million and one things just in case. Trying to remember to take my new tablets 20 minutes before meals but as a constant snacker this is easier said than done.

Mental health has been a wee bit up and down. Anxiety and panic attacks a plenty due to life feeling a bit out of control right now. But it’ll pass. I hope. Unsure right now if I need to go back on anti-depressants to try and enable me to cope again, but not feeling depressed. Is that a thing? If I go to my GP will he think that’s doable? I don’t know.

 

General Life

After two years of owning the flat, renovations are finally well under way. House is in a state of chaos but hopefully in 4 weeks the bulk of it will be done. Trying to work out what to do with it once we’re done. I can’t live here for much longer (read above re panic attacks. Unfortunately they’re flat related) but I also don’t want to sell it because I’m kind hoping to rent it out and sell it in 30 years and retire comfortably on it. But that big family home in Edinburgh aint gonna buy itself. If anybody wants to give me the money/has a house to give me (preferably in Morningside, thanks), PLEASE DO.

I’ve returned to my Open Uni studies with the hope of finally getting that PPE degree that has eluded me for so long.

I spent a lovely few days in Glasgow with my Mum and Sister to see the absolute legend that is Britney Spears, and Rachel met my sister-in-law Elizabeth and it filled my heart with joy.

I enjoyed an amazing night at the theater to see Jersey Boys (if you’ve not seen it you absolutely must) and also had a great night at the Craig Charles Funk and Soul show. The last time I attended I had only developed arthritis about 4 weeks beforehand and struggled with standing and dancing. This time? I danced so much I got so hot and sweaty you could literally wring my hair out. It was a brilliant evening and one I never thought I’d be able to enjoy with arthritis.

And that folks is that…..for now.

My next blog post will be coming this week (like buses, I know, I know) and is a very exciting one involving this girl on film.

In the meantime, send me all your wisdom for coping with anxiety but also for toe straightening surgery and what to expect post-op!

Toenail and I.

*WARNING*

If you don’t like talk of toes then this is not the blog post for you. There will be no really bad feet photos included (although I do have hundreds for my own personal collection) and I am obviously not a medical professional so I cannot give medical advice on personal situations. Also, GOOGLE IMAGES AT YOUR OWN RISK.

Here we go.

Earlier this morning, I had my 5th round of minor surgery on my toes. It has been something I have mentioned many times before, either here on the blog or on my Instagram but I don’t know if I’ve ever explicitly stated what it was I have been getting done.

I was supposed to just have two toenails worked on today, with my final appointment for the last toe to happen in a few months time. But as the three toes were not next to each other I was asked if I wanted all three off. I agreed and that’s me done forever. So what was it?

Permanent toenail removal. I have now had all my toenails permanently removed.

Why?

Psoriasis of the nail.

I come from a family with a long history of psoriasis on my Fathers side. Scalp psoriasis controlled and ruined my life for so many years I can’t remember what life was like before I developed it. However it wasn’t until after my psoriatic arthritis diagnosis that I started to notice my nails ‘turning’.

The Fingernails

It started in my fingernails. I noticed they were ‘pitting’. The best way I can describe it would be that I started to have little dots in my nails, like they had been pricked with a needle. Lots of little dips and holes. The nails started to become discolored and the tips of the nails became brittle and sort of strange looking. I really don’t know how best to describe it. I am a lover of nail polish and I realised the nails were getting really bad when I couldn’t remove the polish from the dips. These photos aren’t great (I can’t find better ones) but hopefully you can kind of get the idea. The tips of the nails yellowing and kind of spreading  unevenly down the nail.

 

 

 

I have since found photos on instrgram which better show the psoriasis. This was my thumbnail, the photo taken on 1st November 2017, so not that long ago. This is unrecognizable to what I have now, but it very clearly shows the pitting,

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Thankfully however, the psoriasis in my fingernails wasn’t particularly painful and I could manage them. The nails stayed the same thickness and I was able to clip them and file them to try and keep them as tidy as possible. I also learnt that a nail buffer was really useful in trying to keep them smooth. I don’t know if this is recommended (probably not!) but gently buffing away the ridges and dents made a great difference. Since I started cosentyx the pitting has almost stopped, which is great.

The toes however. A whole new level of pain.

The Toenails

It started very quickly. There was no gradual development, just one day I woke up and my nails were causing me agony. One after the other. Big toes first, then it crept to the smaller ones.

If I asked you how your toenails are feeling right now, you wouldn’t be able to tell me. It isn’t something that we can feel, that we’re really aware of, until there’s something wrong with them. My nail psoriasis caused me such pain that I couldn’t put a sock on without being in a lot of pain. Feeling them rubbing against the tops of my shoes became unbearable.

Unlike the fingernails, I couldn’t manage them. They grew ‘backwards’ causing them to be very thick. The grew sidewards and inwards, I suppose like it would be if it was ingrown. I couldn’t clip the nails because of the width and thickness, but also because at this point my arthritis was so severe that I couldn’t even bend or contort my body to reach to do it. My boyfriend loves me dearly, but even he has a limit.

The History

On my first appointment to rheumatology I was referred to a podiatrist. On my first appointment, I had insoles and inserts made to try to stop my toes from curling any more and it was agreed that I could have permanent removal on the big left nail. I’ll go in to more detail shortly.

On my third appointment with my podiatrist, after the removal of the first, she reluctantly agreed that I could have one more nail off but that she would not be referring me for any more removals because, and I quote, “I’ve seen worse”. Well that’s great but it’s not a competition. She also declared that she would use all her powers to forbid me from having toe straightening surgery. Why? Because I turned up to the appointment without socks on (as stated before, socks hurt my nails like a bitch) and because I hadn’t taken her advice to buy granny flesh coloured velcro shoes. To cut a long story short, she dismissed me from podiatry, ordering me to not return to see her, I left the building in floods of tears on the phone to my Mum, declaring that I would find where she lived and burn her house down.

Slight exaggeration. I’d maybe just let it burn half way down. (I’M JOKING).

Cue frantic googling of private practices in the greater Aberdeen area who would remove them in return for money.

On my second removal session however, I was treated by the most wonderful woman named Frances.

Frances was an absolute wee babe. She not only agreed to take two nails off at that session, but that she personally would book all my future appointments, meaning that I no longer had to go through the podiatrist. HAHAHAHA TAKE THAT. Plus orthopedics agreed to straighten my toes shortly after so I win again!!

I think I had 6 nails that were riddled, but I asked Frances if it would be possible to have them all removed, even the healthy ones. Why? Everything was happening so quickly that I felt it was inevitable that I would shortly have psoriasis in all of them. Frances agreed with my sensible logic, and that is what has led me here today.

The Logic

I decided that permanent removal would be the best solution for me. If something is causing you a problem, and you know that you can fix the problem by removing the source, you’d do it right? Well that’s what happened here. The nails are causing me pain and problems. No nails = no pain or problems. I learnt that after the nail is removed, a thin covering will appear where the nail once was so if you’re self conscious, you could still paint on a fake nail with nail polish.

The Procedure

This is minor surgery. You’re in and out within about an hour. For me here in Aberdeen this is done at Frederick Street Health Clinic.

On arrival, you’re weighed to establish how much anesthetic to have administered. You point out the nails that need removing, and then on to the bed you go. Try to get comfy and try to relax.

The toe obviously has to be injected with anesthetic before any work can be carried out. Be warned, these injections are the worst pain I have ever encountered. The big toes in particular are the worst. I’ve been injected directly into my ankle joint before and even that was less painful. Whilst painful, once you’ve been injected that’s it pain wise. So yes, it does hurt. I won’t lie and say it doesn’t, but honestly, once it’s done, you’ll quickly get over it.

The toe is injected twice. Once from either side at the base of the toe. I always take my Mum with me so that I can squeeze her hand, but also because she talks to me throughout the injecting to keep my mind off of it. Top tip – wear a hoody or a jumper. Why? Because you can bite down on it during the pain. Top tip number 2 – Don’t wear grey. I seem to own only grey sweaters and each time I’m injected I sweat so much with fear and pain you could probably wring me out. Top tip number 3 – if like me you’re a glasses wearer, take them off. It helps not to see things in these situations.

Once the toe has been injected, you’ll wait a few minutes for the anesthetic to work. Your toe will be proded by a little sharp stick and assuming you can’t feel the sharp point, you’re good to go. If you can however still feel the toe (this has happened to me on a few occasions), you either just wait a few more mins, or you’re injected again. A tourniquet will be applied to stop the toe from bleeding.

A screen will now be put up so you can’t see your feet. A bit like a little toe cesarean. The podiatry surgeon will then get to work on removing the nail. I’m not going in to detail here because a) it’s grim and b) what I don’t know doesn’t hurt me.

Once the nail has been successfully removed, the area is rubbed with phenol acid. This sounds scary but remember, YOU CAN’T FEEL A THING.

What is the acid for? It’s to kill the nail bed off, preventing regrowth. This is what makes the removal permanent.

Once the nails have been removed, they’ll be dressed. The first dressings, the official one, tends to be big, chunky and very bulky, so wear big shoes that can accommodate this. Not big like clown shoes, but big like extra space.

You’ll then have to sign some paperwork stating that you’ve had anesthetic, what to do over the next 24 hours and that you know not to drive. DO NOT DRIVE. Your insurance is likely to be invalid as your toe is numb.

The Aftermath

Everybody is different in terms of when it happens, but the anesthetic will wear off.

My first big nail removal, I had barely hobbled to the bus stop (all of 400 yards away) before I was crying in agony. Pain level 10. I got home and was writhing around in pain. Curled up on the bed crying my eyes out. I couldn’t get painkillers in me quick enough.

Other nails have had a gradual wear off and little pain. Although I am smart enough now to know to take two painkillers after I’ve left the surgery.

Rest for as long as you feasibly can. Feet up, keeping weight off them. For me I take 48 hours off from life to rest them, although in an ideal world, I would take at least 5 days. This may seem a tad extreme but when I return to work after my standard 2 days of ‘working from home’ (HAHAHAHA, that ol’ chestnut) I instantly regret it and hate myself for going in.

The Aftercare

You’re issued with an aftercare booklet, however I decline them now as I’m an expert, so I’ll have to explain in my own words.

Keep the toe dry for 24 hours at least. You can shower with dressings. Which I was never told when I had my first nail off. I literally kept that foot out of water for 10 weeks. I had to become very inventive:

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Yes that’s right. I made a bin bag shoe. Thank goodness the woman who owned this flat before had a bath with a little shelf. The shelf was a godsend.

Anyway. You’ll be required to keep your toes clean and as sterile as you can. You’ll do this as follows:

  • Boil a kettle of water
  • Add this water to a large bowl
  • Add about 2 teaspoons of salt (I don’t know the exact amount any more, I just know by pouring and experience)
  • Leave the water to cool, THIS IS VERY IMPORTANT
  • When the water is no hotter than 30 degrees C (be sensible here, if the water is on the cool side of warm, you’re ready) then it’s good to be used
  • Tip – I pour my boiling water then I take a bath because when I get out it’s cool enough to use, but also because you’ll need to change the dressing if it gets wet, so makes sense to do the daily dressing after bath/shower time
  • Get your dressings and towel prepared
  • Pop the toes in the salt water for a minute, maybe 2
  • Remove toe, dry VERY CAREFULLY and try not to touch the wound (I leave to air dry, I just use the towel to pop my wet foot on)
  • When the toe is fully dry, dress the toe
  • The dressing should be placed directly over the wound, shiny side down (I very loosely tape my dressing pad to the toe to prevent it slipping around)
  • Pop the tubular bandage over the dressing, it should be twice the length of the toe. Then twist the bandage and pull the other half down. This means you wont see the top of the toe
  • I then use tape to secure the bandage. DO NOT WRAP THE BANDAGE OR TAPE TOO TIGHTLY BECAUSE THIS CAN REDUCE BLOOD FLOW. Take it from someone who knows. If it feels too tight at any point, redo it
  • Repeat this every day until the wound has healed. It can take weeks. I do mine every  day until it has completely healed. Better to be safe than sorry
  • Healing can take anywhere between 6-12 weeks.

Things to Note

As you’re required to change your own dressings, you’ll need to have stocks in ready. When my leaflet explaining what would happen arrived in the post a few weeks before the first procedure, it stated that not all of the required items were available on prescription.  Even though the tape and the sterile dressing pads are available on prescription, I decided that I would order all of my own supplies through amazon. This might be useful if you’re in England and have to pay for your prescriptions, amazon might work out being cheaper.

I use the following:

https://www.amazon.co.uk/Religauze-REL481-Tubular-Gauze-Size/dp/B00B2LLEVA/ref=pd_nav_hcs_rp_t_1?_encoding=UTF8&psc=1&refRID=40XZV03YCGKD1VBDD84V

You’ll need to adjust the size of the gauze depending on which toe you’ve had work on. Big toe = bigger gauze.

https://www.amazon.co.uk/Mefix-Adhesive-Fabric-Dressing-5cm/dp/B002ZH2Z04/ref=pd_nav_hcs_rp_t_2?_encoding=UTF8&psc=1&refRID=E3SVSK7MMQ9FVHY2HGH8

I cut this into the sections, and then I halve them to make them more manageable sizes.

https://www.amazon.co.uk/MELOLIN-INDIVIDUAL-STERILE-ADHERENT-DRESSINGS/dp/B00C0AVMHS/ref=pd_rhf_pe_s_cp_0_6?_encoding=UTF8&pd_rd_i=B00C0AVMHS&pd_rd_r=V130NJB9X4G9N165V1RJ&pd_rd_w=9H84a&pd_rd_wg=Q0jkG&psc=1&refRID=V130NJB9X4G9N165V1RJ

Again, I cut these in halves. This is my personal preference, but half a dressing means that it’s less chunky and it’s easier to apply and tape the gauze, no trying to fit the whole dressing in.

The leaflet also stated that I would be back to the clinic a few days later for my first dressing change. This is no longer offered here. I appreciate each NHS is different but bear this in mind. Which nicely leads me on to….

Ask the podiatrist HOW to change your dressings. Because I was never given ANY information on this and had to learn very very quickly what to do. It was trial and error but after the first maybe 10 times, I’d perfected my technique. Although bear in mind, each toe is in different positions with toes/no toes either side so you’ll have to adapt your technique but you’ll become a pro.

If you suspect infection, go to your GP. I developed two infections on the first big toe, both of which had to be treated with antibiotics. I was on methotrexate during this time so was at a heightened rise of infection, so bear this in mind. In my experience, if you’re concerned about the healing, or lack thereof, booking a nurse appointment might be worthwhile. For toe number 1, I booked an appointment because on top of infections, I also had no idea what the toe was supposed to look like or it it was healing. I then started to worry I was overreacting, but the nurse was really sympathetic and it was reassuring to hear that the toe was healing nicely, and that my dressings were doing the job.

Here’s a wonderful selection off photos from over the last year for you to enjoy

 

 

 

 

Today went well, the three nails off were all declared healthy but my request to have them off anyway was still fully supported and for this I am incredibly grateful. I am however in a lot of pain now. Having my fused toe injected (second on the right foot) was literally the worst injection to date, and I did cry, but the team were lovely and my Mum, as always, was there to support me. The anesthetic wore off very quickly and I’ve been popping tramadol like they’re sweets, but still very, very sore. I am due to log on from home soon to work but I suspect I am going to need to nap.

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Feet up on my sofa, Disney pjs on (are there any other kind?), cat on my legs, endless supplies of cups of tea.

If you’ve got this far then as always, I salute you. If you’ve been considering permanent removal then I can’t recommend it enough. If you’ve any questions or are curious about anything then please get in touch.

I’m off to put Aladdin on, coorie in with my cat and marvel at being another step closer to my own personal recovery.

 

How to (unofficially) survive a sinus infection

How to (unofficially) survive a sinus infection

If you follow me on Instagram then you’ll probably have seen that I have a severe sinus infection.

It first occurred just after I started my cosentyx, and a quick read of the side effects shows you that sinusitis is pretty high up the list of things. Why are side effects never things like beautiful glowing skin or impossibly soft and shiny hair?

I’ve had sinusitis for over six months now. It has been unrelenting. Every time I think it’s getting better, it attacks me again with a vengeance.

I first saw a GP about it a few days after Christmas. As soon as I uttered the words “I’m on cosentyx” the tone of the appointment change. A quick check of cosentyx in the medical version of google and I’m told it’s a side effect. Get on with it. Just one of these things I’ll have to put up with. Trying to explain to her that I have been getting on with it but I’m here because I can take no more. Only to leave with no advice, no sympathy, nothing.

I continued to just get on with it as best I could.

But barely a day went by when I didn’t feel the symptoms. Painful forehead. Painful cheeks. Blocked nose. Headache. Earache. Sore throat. Sniffly. Runny nose. Sore nose. I knew it wasn’t a cold because even when auto immune supressed like I am, colds do get better. This wasn’t ever getting better. It was only getting worse.

2 days ago I was enjoying a nice weekend at home with my boyfriend, spending some time on the sofa slobbing out watching the World Cup. Out of nowhere, and I mean out of nowhere, I became so run down. All of the symptoms I listed above came on in seconds. I knew at this point I had to go back to my doctor and was lucky enough yesterday to get a same day appointment.

Being the pessimist that I am, I was expecting the doctor to fob me off like I have been all of the other times. How wrong I was. A quick inspection confirmed that I have been suffering with a severe sinus infection that I shouldn’t expect to clear for about 6 weeks. I returned to work after the appointment but the symptoms got the better of me and I headed home to rest, which is where I still am now. Feeling that usual guilt of wondering what colleagues think of me being off again, trying to rationalise it all with the knowledge that I am unwell and that I really do need the rest.

I woke up this morning with the worst skin and dry chapped lips due to the constant blowing of my nose. I described myself to a friend earlier as both feeling and looking like ‘day old bread’. Can’t wait to get better and feel better and look better. It doesn’t just happen by itself however.

So. I’ve decided to share with you my personal guide to dealing with a sinus infection.

Let’s get steaming

  • Great for both trying to breathe again and for sorting out horrible lizard skin. I use a toner tab from Lush and a few drops of eucalyptus oil. Add to a bowl, mix with a kettle full of water that has been boiled and voila. Don’t stick your head to close to the water, giving yourself a steam burn at this point really would be the worst. Head over bowl, towel over head, and breathhhhhe. I steam my face for about 20 mins and follow with a good moisturiser. Hot baths are also great. I’ve had 2 so far today and will have one shortly before I go to bed. Again, I add a few drops of the eucalyptus oil to the bath.
  • Nasal sprays are a godsend. You will fall in love with one. And as tempting as it is to stick it up your nose 100 times a day every day for as long as you live, this is not recommended. Don’t use one for more than a week. This is definitely a case of something where I should practice what I preach. It’s not my fault it feels so damn good! Sterimar is a great nasal spray and I know a lot of fellow PsA sufferers swear by the stuff.

 

Softly Softly

  • I love love love using Eucerin Replenishing Face Cream with 5% urea. This one is the ‘night’ formula which is a lot thicker than the day cream. A little goes a long way. It can leave skin greasy after it’s been applied but this is a small price to pay. (Side note, all Eucerin products with urea in worked wonders for my psoriasis so give it a go)
  • Egyptian Magic Cream. Sure, on the surface, it’s just a tub of very expensive Vaseline. But this is a life saver. I apply to the skin that’s been abused by nose blowing and to sore lips.
  • When everything starts to get better and skin is less sore, Origins Never a Dull Moment exfoliator gets you back to beautiful glowing skin. Plus it’s microbead free so seals and turtles benefit too.

General Points for Survival

  • See a doctor. I was prescribed antibiotics and a strong nasal spray. If you’re on a biologic like I am, check with your doctor if you can take antibiotics. I did not check this. I took my first two antibiotics yesterday, and then that evening took my monthly cosentyx shot as planned. With hindsight, probably not something I should have done. I’m taking antibiotics to fight infection before immediately injecting a drug that heavily reduces my bodies ability to, well, fight infection. Not my finest moment. Hoping that the antibiotics will still do the job BUT YOU MUST CHECK WITH YOUR GP.
  • Lots of rest. Recovery is quicker if you have a cat to keep you company and provide limitless cuddles. Dogs work just as well. My rest right now involves me in my dressing gown, laid out on my sofa, propped up by memory foam cushions and under a comfy blanket. World Cup on TV, cup of tea to hand, endless supply of chocolate buttons.
  • Painkillers. If you need ‘em, take ‘em. Right now my painkiller of choice is co-codamol. My sinus pain is most severe in my forehead and when it flares I want to bash my head against a wall. The co-codamol does a good job at relieving this. I hate people who claim that painkillers are bad. Who preach for you to not take painkillers. These are the same people who claim that things like biologics are poison and natural is best blah blah blah. If you need painkillers, you take them. Don’t listen to fake martyrs. I hate these people. I love tramadol. Life goes on.
  • Lots of water. I am powered by rooibos tea.

 

A bit like florals for spring, I’m sure my survival guide is literally ground breaking. The abused skin around my nose is already getting softer so by the time I intend to face the outside world I hope to be looking fresh and healthy.

If you’ve any advice and tips for how you survive sinusitis and other ailments, then please let me know. I doubt this will be my last bout!

 

Products

Toner Tabs https://uk.lush.com/products/spot-treatment/tea-tree

Eucalyptus Oil https://www.boots.com/botanics-aromatherapy-pure-essential-eucalyptus-oil-10ml-10031672

Eucerin Facial Moisturiser https://www.boots.com/eucerin/eucerin-top-10-favourites/eucerin-dry-skin-replenishing-face-cream-night-urea-with-lactate-50ml-10065361

Egyptian Magic Cream https://www.feelunique.com/p/Egyptian-Magic-All-Purpose-Skin-Cream-118ml?gclid=EAIaIQobChMInuGczLfg2wIVFrcbCh30uwYlEAAYASAAEgLrRPD_BwE&gclsrc=aw.ds

Origins Scrub https://www.origins.co.uk/product/15343/11869/skincare/cleanse/exfoliator/never-a-dull-moment/skin-brightening-face-polisher-with-fruit-extracts

Sterimar Nasal Spray https://www.boots.com/sterimar-stop-and-protect-cold-and-sinus-relief-20ml-10191795

 

 

 

 

 

MIA. My Self Esteem.

 

Self-esteem

[self-i-steem-]

Noun

  1. A realistic respect for or favourable impression of oneself; self-respect.

Has anybody seen my self-esteem?

Last seen around July 2016.

Belonged to a girl about 5’6”, size 8, usually wearing a cute dress, full fringe, lashings of black eyeliner and generally happy looking.

No?

No, I’ve not seen her either. She’s been missing for a while now.

When self-esteem disappears, where does it go? Is it gradual? Or is it there one day and gone the next?

I can pinpoint why mine started to disappeared. It went when my toes started to deform. When toes are bent due to dactylitis, like mine are, shoes don’t fit. Initially I could still wear a variety of flat shoes and boots. Loafers, sneakers, pretty pumps, these kinds of things. Shoes that I would happily wear with dresses. But as my toes started to become worse, I could no longer wear these shoes. A brand-new pair of Adidas Gazelles, bought in April 2016, didn’t fit by the June. My beloved and battered Fred Perry pumps were so tight on my new feet they would bring me to tears. I had no choice but to buy skechers. A brand and a shoe type I wouldn’t have given a second thought about before. But now they were the only thing that would fit (aside from my running trainers, but I was far too much of an emotional wreck initially to wear anything that reminded me of running). So, with black flat chunky skechers, suddenly my style changed.

My vast array of dresses got put to the back of the wardrobe. Why? Because not only was it easier and less painful to wear trousers and not tights (I live in NE Scotland after all, bare legs are for the foolish), I simply didn’t have any shoes to wear with them. Everything I wore suddenly revolved around the same, elasticated pair of black trousers, which I am still wearing today. Shirts for work, sweaters for home. Repeat until the end of time. My style of dress, which I so closely associated with my sense of femininity changed overnight.

All of my shoes and boots that didn’t fit got put in to the attic. I.e., every singly pair. If I couldn’t see them, they couldn’t make me cry. I have on many occasions walked in to a shop and gone to try shoes on. Believing that one pair will fit. Maybe a wide fit pair of pretty ballerinas? A pair of sandals for holiday? The answer every time is no. I have cried in shops more times than I care to admit to. So truly upset that not only do shoes not fit, that the majority of people would have no idea why. That when I say to people how upsetting it is, that they think I’m being petty.

But it wasn’t just how I dressed that changed. My style generally became more relaxed. And with that, so did my approach to personal care. I no longer wore my contact lenses, opting instead to wear my glasses because it meant that I didn’t have to bother wearing make-up and could just hide behind them. I stopped having my fringe cut in, choosing instead just to scrape my hair back every day. All of this coupled with a two-stone weight gain has led me to barely recognising myself anymore. The irony being that I had higher self esteem when I was covered head to toe in psoriasis.

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Same person but two very different people. Just 2 and a bit years apart, but worlds apart. (*must not cry looking at photo 1*)

Why should I make an effort? I wasn’t worth any effort. I’m still not sure how much of me is worth an effort.

Put simply.

My self-esteem became pretty darn low.

But why has my physical appearance had such an impact on my all-round self-esteem? Is it really a reason why I retreat further and further in to my shell with each passing month?

Why is my self-esteem so closely linked to how I look? If I had never had arthritis would I have continued to care for my appearance and I would have still had great self-esteem? Is it as easy as that?

I have my fair share of faults and flaws but I like to think as a person I’m pretty ok. I’m kind (although don’t tell anybody this, I have a reputation to uphold), I’m fairly affable and I like to think I’m the funniest person most people will ever meet.

Yet when I think of my own self-esteem I don’t think of these things, I see only what I perceive as negatives. Shy, reserved, fewer friends than I have unbent toes, a constant feeling of being left behind in life which surely must be my fault. Never feeling good enough, always feeling a burden. One of the biggest problems for me is a constant need for reassurance. I can never do things right. I spend most of my time locked away in my flat, not having the confidence to do anything. On a Monday morning, work colleagues no longer ask what I did at the weekend because they already know the answer.

One of my most favourite people in the entire world has a cripplingly low self-esteem. I have tried on many occasions to tell him that I think he is awesome, but I know it’s not as easy as that. And if it was, why can I not listen to my own advice? Why can we never see ourselves through someone elses eyes?

I have a postcard at home (which will eventually be framed, probably when I get round to it in 45 years time) that says “Love yourself as your cat loves you” and this should be my new mantra because Mo adores me. She loves me when I’m happy, when I’m sad, when I haven’t washed my hair for 5 days, when I’m anxious and well, she loves me no matter what. Apart from when I refuse to give her an extra serving of dreamies.

The internet is awash with people advocating ‘self-care’ but how effective is self-care when self-esteem is so low? Especially when self-care varies so much from person to person. The internet is also a reason why people, and probably myself included to some extent, have such issues. I spend a good 90% of my time at work aimlessly scrolling through Instagram, seeing everybody else’s great lives, but we all know of course that this is merely what the person wants you to see.

I have no real conclusion to this entry. It’s still something that I am trying to get my head around. My arthritis has changed so much for me physically and it continues to change me as a person. It continues to challenge who I think I am, to question my own self-worth and happiness, it continues to push me to my limits. Even now, 7 months in to cosentyx, 7 months of living an almost ‘normal’ physical existence, why does my arthritis continue to have such a hold on me?

Please somebody else with chronic illness tell me that this will get better? Or if it doesn’t, please tell me I will be ok.

When did life become so difficult?

But, as always, it’s not all doom and gloom.

I am due, at some point in the future, to have the surgery to straighten my toes. But of the three toes that I desperately need doing, I have so far only been approved for surgery on the one. I am forever hopeful that my surgeon will give the green light to have all of them done at the same time. I won’t know until my final consultation if the operation will allow or prevent me from wearing heels ever again. But I’m honestly ok with not. I wasn’t a prolific wearer of them pre-arthritis, and really, I just want to wear some pretty flats. I never want to wear those black skechers to a wedding (least of all my own) ever again.

In fact, the first thing I’ll do post-surgery?

Burn the shoes.

Number 1 On The Bucket List = COMPLETE

“You have brains in your head and feet in your shoes. You can steer yourself any direction you choose. You’re on your own and you know what you know. You are the one who’ll decide where you’ll go. Well, go forward, go forward. On to glory!”

Last Sunday I fulfilled a life long dream. I ran the London Marathon.

In the run up to the big day I was avoiding a lot of conversation about it. The odd photograph on Instagram here and there, but no writing. I had so many things that I wanted to blog about but I didn’t. Why? Well, firstly, I was very, very scared about what I was going to be putting my body through. This was my first marathon ever, which was scary enough, but add in my arthritis to the mix and I really did feel like I was dicing with death. People don’t tend to know that they have an undiagnosed heart condition until it’s too late after all. But I also didn’t blog because I am always very aware that just because I can do a marathon with arthritis doesn’t mean this is the norm. I suppose part of me didn’t want to be ‘rubbing it in’ peoples faces.

However.

I feel like this might be the longest blog post I ever publish so get the kettle on and settle down.

In The Beginning

This journey begins in the 90s. Little Rebecca, sports mad. A talented school athlete. A lover of watching the marathon. Little Rebecca knew that one day she was going to run the London Marathon.

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I’m sure we all know what happens between then and April 2016. I continued to be sports mad. I would travel the UK and Europe to watch football. I never found a sport I didn’t enjoy. I grew taller. I went to university. I became lazy. I start running. Life becomes very good again. My health improves. I become fit. I lose some much needed weight. My mental health becomes the best it has ever been. My confidence generally is sky high. I fall head over heels in love with running. I run and then one day I can’t walk. I stiffen up. I can’t move. I’m swollen. I’m in pain. Turns out, I have psoriatic arthritis. I sink in to a deep depression of which I can’t see how I will ever get out of it. I can’t even walk from one room to another, let alone run. Life becomes dreadful.

However. I don’t know when I’m beaten.

The Build Up

On the 15th August 2016 I applied for, and was given, the marathon place from Arthritis Research UK. Looking back now with hindsight, what a really really really stupid thing for me to do. This was still 2 weeks before my official diagnosis at hospital, I was medication free and flaring badly. But I clearly had the naïve belief that I would be ok and up and running again one day. I took a charity spot because I knew that I had to run London. There was no other marathon that would do. I didn’t want to enter the ballot and not be successful. I needed to know I would be running. Which was a sensible idea because I haven’t received a ballot spot in the 4 years I’ve applied. Plus, it’s always nice to raise money for charity, and ARUK were a charity who I suddenly and unexpectedly had a very personal connection with.

Come the day of the 2017 marathon I was unable to run and had to defer my place (See here for how I felt that day and also some cracking photos of me in a hat: https://sensibleshoes.blog/2017/04/23/the-london-marathon/ ) I was failing spectacularly on methotrexate. Heavily reliant of diazepam to try and control the pain and spasms I was having in my neck. This was probably the worst month I have ever experienced with arthritis. This would continue until I started sulfasalazine. Which I had such a severe reaction to I was taken off after only 6 days. 3 more months of being in a flare and medication free would follow until October 2017.

Enter cosentyx. The injections worked instantly.

In the November, I would run my first 5k in a very long time around The Kelpies. It would be slow but steady. I would get round the entire course without stopping in 40 minutes. My body felt strong and I had no negative repercussions over the next few weeks. I would boldly declare this the day that the marathon comeback started.

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Only it wasn’t. I wouldn’t run again until February. I would have toe surgery in the January that would prevent me from doing any exercise. I tried to keep moving and so walked 1 mile every lunch break. I still felt quite fit. But fit enough for 26.2 miles? HELL NO. I also didn’t do a lot of running because I am inherently a very lazy person and don’t need an excuse to stay home in my pjs and just read. But mid February I did start going out a few times after work. The odd 3km. Maybe a 6km if I was feeling good. Saving a 10km run for a Sunday.

I combined the running with a lot of walking but I felt ok in the days after. No joint pain, no swellings.

But it wasn’t all good. My longest run was only 6 miles. All of my training runs combined only came to 32 miles. This is 100% not advisable in any way.

The last few weeks have been some of the most difficult of my life, physically and mentally.

My decision to run the marathon was one that truthfully, I didn’t really think through. When I was first diagnosed with arthritis, I was so angry that it had robbed me of my ability to run. To do something that I loved doing. It destroyed me. Pre-arthritis, my body was strong enough and I was fit enough to be working towards a sub 4-hour marathon. I knew that my first marathon would have to be London and I knew that it wouldn’t be my last.

But obviously, we all know what happened.

Overnight, I was left devastated by the fact that my body had given up on me.

Overnight I had become disabled.

Even though I could barely walk, I still believed that one day I would run again. That one day I would run the London Marathon.

With the benefit of hindsight, this would be one of the most naïve moments of my entire life.

Over the last four weeks though, I have struggled with the enormity of what I am about to do. I would cry at any given moment, overcome with fear that I wasn’t ready. That my body wouldn’t get around the course. That somewhat morbidly, I wouldn’t survive. I was quite literally sick with fear. I would sit up all night worried about what would happen. On numerous occasions I decided that I simply wouldn’t bother competing. After one particularly arduous 6 mile run, Jack said to me “I feel like you’re not enjoying running any more. Are you?”

And the answer was no. I wasn’t enjoying it. Every short run was fraught with fear that I was making my body worse, and let’s be honest, I probably was. My left knee was causing me so much pain that I didn’t know what to do. But as I kept reminding myself, I needed to do London. For me. I needed to know that I could still do it. That the arthritis that has so ravaged my body and my life would not win.

I needed closure.

And with that, I promised Jack that I would never run again after the marathon. I feel okay with that.

The pressure continued to build. I developed a very good relationship with the team at Arthritis Research UK and we agreed that they could share my story with the local and national press.

First up came the local paper, the Evening Express:

https://www.eveningexpress.co.uk/fp/news/local/north-east-woman-to-run-london-marathon-after-doctors-told-her-she-may-need-wheelchair/

The day after this was published I went to the local radio station North Sound One to be interviewed:

https://planetradio.co.uk/northsound/local/news/aberdeen-woman-battling-severe-arthritis-taking-on-marathon-challenge-2/

My interview ended up being played on every hourly news bulletin. Work colleagues were asking for autographs. I became very aware that there was a lot of expectation on me to complete the marathon, a lot was riding on me delivering.

Then came The Scottish Sun:

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And so the anxiety grew. I had so many sleepless nights. I would cry repeatedly throughout the day. I lost nearly 10lbs in weight because I was constantly being sick through fear. I couldn’t do it. I wasn’t ready. My body couldn’t do a marathon. I was going to drop out, I could feel it. I would never live it down.

The week of the marathon arrived. Then came an even bigger blow. My employers, who prior to this had agreed to match my sponsorship, suddenly declared they wouldn’t be making any kind of contribution. I had been quite relaxed about my fundraising until this point because I knew that I would be matched. Now, with a week to go, I was up a creek without a paddle. This is still an issue that I have a great problem with and I’ve escalated the matter up to senior management and will continue to do so until they keep their promise to me.

Oh. Did I mention that London was about to be in the grip of a heatwave?

Friday 20th April 2018

On the Friday, to London JP and I went. Anxious but I felt surprisingly calm. There was to be no going back now. At the airport I learnt that I would be one of fifteen running because they had arthritis. It kept things in perspective about why I was running. I never thought I would have this opportunity. I was now just 48 hours away from it. I was doing it against the odds.

The Expo at the Excel center awaited. The DLR rammed full of other people off to collect their race numbers. Silently sizing everyone else up “I’ll beat him” “I bet she’s fast”. I wonder what people thought when they saw me. Were they sizing me up? Slim, looks fit, bet she’s done this before. But nobody knew of course just what’s going on with my body. And I too didn’t know what everyone else was going through. How many others were there overcoming their own hurdles and personal struggles.

The expo I did not enjoy. I felt like a complete fraud. I can’t run a marathon!! These people are actually running  it. I just want to complete it. People at the stands trying to get me to sign up to various exotic marathons around the world. PLEASE STOP ASKING ME I CAN’T RUN A MARATHON I DON’T BELONG HERE. Forgetting of course, the whole reason why I was there was because of a marathon. I did however see Paula Radcliffe.

Fun fact about me. I am in love with Paula Radcliffe. I met her in Glasgow in October 2015.

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Let’s just take a moment to appreciate how fit and toned my body is here. SIGH. I had just run 10k. I was probably quite sweaty and smelly but she was far too polite to say so. I went up to her and I found myself stroking her arm. Not just a light brush. But caressing her arm. I can’t tell you just how unbelievably lovely she is. So it was a lovely surprise to see her in London and to be so close to her again.

The restraining order has clearly been lifted.

What I did enjoy about the expo though was the shirt printing station. I had known for a while that I was going to have an additional message on the back of my shirt and now was my opportunity. This would turn out to be the best £14 I’ve ever spent on running. Even though they didn’t include the apostrophe I so clearly added.

Something that they don’t tell you about marathons though (and if they do they should bloody shout it louder) is that you will be absolutely SICK of pasta. I was eating so much pasta that I got to a stage where I couldn’t chew it anymore. I was shoveling it in my mouth and it was going nowhere. It was pasta puree, like baby food, just falling out of my mouth. I have never been so attractive.

Saturday 21st April 2018

So came Saturday. The day before Sunday. The day before the marathon. Nerves quite high. But also I felt quite content. The weather was lovely so we decided to go for a walk. After a quick pit stop at the National Gallery to see my favourite painting of all time (FYI, Whistlejacket) we went to my happy place to avoid the marathon pressure. Somewhere that holds so many happy memories for me, Going as a child with my parents and my sister to feed the ducks. To hunt for squirrels. To play and laugh and have fun.

We went to St James Park. AKA THE END OF THE MARATHON. I wasn’t escaping the stress, I was willingly walking right in to it.

More pasta puree was consumed and that nights sleep would be one of the best I had in a while. I didn’t wake numerous times. I fell asleep and I stayed alseep.

Race Day

6am alarm. 2 slices of toast a mouthful of cereal forced down. Everyone at breakfast all there that early for the same reason. We’re all about to undertake 26.2 miles on the streets of London. And just like that, we’re off towards Brixton tube station.

Before I even know what’s going on I’m in Greenwich. Walking along Greenwich High Road, a road I know well, on my way to the park. Suddenly I remember why I love races. We’re all in this together. There’s a great sense of expectation. The sun is shining. JP walks me all the way up to the entrance of the race pens and I realise, I don’t feel scared. I don’t feel nervous. I am excited. I know I can do this. I know at some point later that day I will have done it.

I met up with a lot of fellow Team A runners and there’s a great sense that we really are a team. I’m not the only one running this with arthritis and that’s reassuring. A quick trip to the toilet for a last minute wee and I’m off to my pen. I put in such a slow estimated finish time I’m in the last pen with the fancy dressers. It’s not even 10am yet but it is absolutely scorching. As I do though, I get talking to everyone around me. We all share that same feeling of the unknown, not knowing what’s ahead of us, but we all know we’re gonna take our time to make sure we get round safely. Chat turns to training. How far did you go? People start to sound worried when they share that their longest run was only 19 miles. 16 miles. I say “I’ll make you laugh, my longest run was 6 miles”. Cue laughter from everyone, a chorus of “yes that does make me feel better”, before they realise. I’m telling the truth. Yet at this particular moment, just minutes away from The Queen pressing the start button, I know I am ready.

ANDDDDD WE’RE OFF.

Only I’m not. And it will take something near to 53 minutes before I cross the start line (I wasn’t joking when I said I was at the back).

“Whatever you do. Don’t set off fast. It’s slightly downhill, it’ll catch you out. Pace yourself”

I’m running. I’m running the London Marathon. Oh and I’m walking. I’m walking the London Marathon. I am here. I am doing this. This doesn’t seem real.

I’m passed by Mr Bump. A full pack of Pink Lady Apples. A man with an inflatable T-Rex suit on. A dalek, complete with sound effects. 3 rhinos.

People passing me gently squeeze my arm. They’ve read the message on my shirt, they tell me I’m inspirational, I’m so brave, that I am amazing.

At mile 3, the shirt did something I never expected it to do. A man ran up to me and told me he too had arthritis. We get chatting (honestly, I can’t stop talking) and he asks if he can run with me. And so, for the next 8 miles, Phil becomes my new best marathon friend. He realises pretty early on that I am very bossy, but he’s too kind to say anything. I try to pass this off as being some kind of motivational runner. But really. I just love the sound of my own voice.

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When we passed the Cutty Sark, I knew that I was about to see JP. I see him and off I sprint. We hug, I start to have a few tears. I take a terrible selfie that will never see the light of day, and off I go to the Arthritis Research cheer squad a few yards up. I make a very literal song and dance about this, twirling my way up to them. And off I go again.

And then I see her. Rachel. My Sister. I didn’t expect to see her for another 7 miles. And so begin the waterworks. I literally cannot stop crying (if you zoom in you can see a single solitary tear dripping down my cheek. I assume the others quickly evaporated in the heat.)

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But the marathon waits for no cry baby so off I go again. Come on Phil, we got this! The heat increases. By this point I’m pretty sure Mo Farah has finished. A friend of Phils lives at mile 8. He comes out to see us with bottles of frozen water. I’ve never known true love quite like a bottle of frozen water against the back of my neck. At mile 11, I don’t quite know what happens. I am running followed by walking, and I turn around, and Phil has gone. I don’t know where has gone. I feel really very bad but I have to keep on going.

The crowd deserve a very special mention at this point. Along the entire course people of all nationalities, ethnicities, religions, sexuality, walk of life and more were all united by the marathon. When water was scarce on the course (which was alarmingly frequent) people were attaching hose pipes to their kitchen sinks to fill our bottles. Running out with jugs to top us up. People offering us suncream. Ice lollies. Sweets and food. So many people cheering us on by name, having some banter. They were unwavering in their support.

Half Way

Tower Bridge. That wonderful London icon. This is the point where most people get emotional. Not me. I didn’t see what the fuss was about. The thing about Tower Bridge is that it is best admired from another bridge. But hey, I ran it. It was cool.

I cross the half way point. I am now in completely uncharted territory, having never run above 13.1 miles before. But I feel very, very good. I know at about 14 miles to expect JP, Rachel and her boyfriend James, and this keeps me going. Like a mirage on the distance, I see them.

More tears. We all agree I look fantastic. If not slightly sweaty. I mutter the words “I FEEL GREAT” and off I go. I will regret this statement in just 3 miles time.

Mile 17. The right knee starts to hurt. Like, really hurt. I am by this point doing a lot more walking than I am running. People around me are dropping like flies in the heat. Canary Wharf. Now THAT sets off the waterworks. A building I so closely relate to my childhood (I don’t know why either so don’t ask) but running towards that magnificent beast really got me emotional. But still the knee hurts. I have to keep going. 20 miles. The pain gets worse. But I have to keep going. Go forward, go forward, on to glory!

At mile 21, the cheer squad has increased one, by the arrival of Max, who’s birthday it happened to be. Max has been my dearest friend since we met at university almost 10 years ago and I love him to bits. Somehow a sign has appeared! Wow! They made me a sign!! I will learn afterwards that they found this sign discarded on the ground, but as I happen to be Miss Becca, they took the sign as a sign they were meant to find it. More tears. I have lost so much fluid through both sweat and tears.

The Knee

I don’t know how I do it, but I find myself at 24 miles. Time has gone alarmingly quickly. And then it happens. The knee. It twists. I want to cry out. I want to be sick from pain. But I can’t. I am within touching distance of the finish now, I have to keep moving. It all becomes a blur from here on. I spend about a mile walking with a fellow Team A runner Hazel who fills me with the encouragement I need to keep hobbling.

25 miles.

Buckingham Palace. The cheer squad for the final time. A tap on the shoulder from a fellow runner. “I have arthritis too, I just want to say I love your shirt.” We get talking. 400 meters to go. I tell her I have to run this part. I have to run across that line. I do.

I cross that line.

I completed the marathon.

The girl I just met also crosses the line. She cries. I cry. I ask if I can hug her and she says yes. We realise at this moment we ‘know’ each other through a facebook group for young people with arthritis ‘Arthurs Place’. Frederica. Rheumatoid arthritis warrior. We had connected for the first time the day before, and by the powers of the universe, we ended up crossing the line at the exact same time.

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And off I hobble to St James’ Park to meet the squad. I can’t support any weight on my right leg now. It is a buckling mess. I realise at this point that my complete lack of distance training was the best thing I could have done. Or not done as the case may be. If I’d have done 20 miles in training, there’s a high chance my knee would have gone and I wouldn’t have been able to take part. See. Always method to my madness.

The real tears start. The uncontrollable sobbing. I am OVERWHELMED by messages from people. Friends old and new. Strangers. Work colleagues. Long lost loves and worst enemies. There isn’t a single person who at that moment in time I don’t hear from. I am lost for words. I was told I would never run again and I just completed the marathon. I phone my beloved Mum, who hears me cry out the words that I did it. Cool as anything she simply says “Well done, I knew you would do it”, and she did. I can never admit to her that she was right, but she was.

I can’t stand up. I can’t walk. I have to be supported pretty heavily with a person either side of me. But it’s ok. I can take this pain. This is a pain I never thought I would experience. A pain that tells me I achieved the unachievable.

It occurs to me that I haven’t had a wee in over 7 hours (we’re all friends here). This is probably the longest time in my entire life I have gone without. I am affectionately known as wee-wee head, due to my drinking 4 liters (minimum) of water every day. It will take me about 6 days to properly re-hydrate myself again. It will take me a week to truly appreciate what I have achieved.

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The Aftermath

And just like that. It’s done.

I promised the world that I would never run another marathon.

I instantly take it back.

I want to do it all over again. Not at that very moment admittedly. But next year. Every year my body will allow me. I’m going to run it again.

Best marathon friend forever Phil reaches out to me on facebook. I am overjoyed. We both survived the greatest test we’d ever faced and made a friend in the process.

The next few days pass in a haze. My knee is very bad, and even now, is still excruciating, but I have that same naive belief it will get better. I returned to work to be met with high praise and admiration, even by those who doubted I would do it beforehand. The sponsorship money rolls in. The support makes me emotional again.

Whilst I am no longer an official Team A member, my work with Arthritis Research UK is hopefully not finished. Ive been trying to convince them to put me in TV advert so that the world can see my beautiful face. I’m not sure if they think I’m joking…..

The Future

If you have made it this far, I salute you.

In a few days time I am back in hospital for toe surgery. No running for a few months. The next challenge is The Great North Run in September. Given how good I am at just winging it, I probably won’t start training until the day before.

I still don’t think what I have achieved has fully hit me yet. I don’t know when the reality will hit me. It’s coming in drips, but the enormity of it is still to come.

My marathon of 26.2 miles might not be everyone’s marathon. Just walking 500 meters will feel like the same achievement for other people. But two years ago, and even a year ago, I lost that belief that I could do this. I never thought I would do it. I gave up. In my lowest moments I never saw this day happening. And whilst I’m not saying that everyone has a marathon in them, I do know that arthritis doesn’t have to rob you of everything. I want to tell you all that there will be better days. That those hopes and dreams you feel have been taken from you are still there to be yours. Never, ever stop believing like I did.

Final Thoughts

Of all the photos that got taken through the day, this one is possibly my favourite. Sure we might be looking in different directions, but I can feel the love between us. I honestly wouldn’t share wearing a medal with anybody else.

If you have a sibling who you don’t look particularly similar to, take some comfort from the fact that despite having no resemblance to the other, Rachel and I are in fact 100% full sisters.  She, tall and willowy with curves in all the right places, a delicate bone structure and a figure to die for. Me, short, stumpy, big round face, body of a pre-pubescent boy, the spitting image of our Chinese Grandad when he was 60 years old.

But she is my squishy. My number one supporter. She will be well chuffed that I’ve written about her.

Thanks Squish. I love you.

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