8 Weeks post Pin Pull

Things you should know about me.

I often say I’ll do something but then can’t be bothered.

Often when I can be bothered, I’ll start the task and then get bored or distracted midway and will stop. Never to return to it again.

This has been the recurring theme of my 30 and a half years on this earth.

People, activities, jobs…I have a short attention span.

Tomorrow makes it eight weeks since I had my pins pulled and I am yet to get around to writing about the experience. I don’t have any kind of excuse other than chronic laziness. Also, where has the time gone? I always thought old people were joking when they said life goes quicker when you’re older but turns out, the joke is on me. Because it’s practically Christmas. And yet I’m no closer to retirement.

How was the pin pull?

Surprisingly, absolutely fine.

Yes, it did involve my consultant using an actual pair of pliars to pull them, but honestly a quick pain free tug and they were out. A tad uncomfortable, but not painful. A fair bit of blood and two little holes in the top of my toes but that was it. I recall it felt a bit like somebody pressing down on a bruise and them pressure being released. Like my toes were champagne bottles or something. I try to avoid looking at things like this (thankfully, being very short sighted, all I have to do is remove my glasses), but my overriding memory of it though was that the pins were both a lot longer and thicker than I expected (something a gal so seldom complains about).

Pre-pin pull however I had removed all of my bandages and dressings because frankly I was so fed up it was literally making me cry. Hot, itchy and uncomfortable so on New Years Eve I cut them off to give me some relief. Talking to others it seems that a lot of people have their bandages removed a the two week check up. Not me, I have more added on. I was worried I’d be told off, that I should have kept them on but thankfully this wasn’t the case.

Never one to miss an opportunity to try and make people laugh (usually at my own expense), I struck up a conversation with the nurse about how I’m not usually very good at hospital situations (I once fainted and hit the floor very hard watching my Mum recovering after having given blood…I wasn’t even four years old. I’ve always been dramatic, but I did get a free tub of biscuits from the kind nurses to make me feel better, so maybe I’ve just subconsciously been bad at these things in a bid to get biscuits. Hobnobs please), and the next thing I knew she presented me with a certificate with my name on and stickers celebrating how brave I was. JP was mortified. I however told the lovely nurse that the certificate would take pride of place on my bookcase, and it has.

My consultant has referred me for foot two and I’m hopeful I’ll be seen sometime this year.

I ended up taking an extra 2 weeks off work because I overestimated how quickly I’d get back to normal. I was still very scared to walk with my toes on my floor for the first few weeks, I just automatically stuck to walking on the heel. But with time and practice, I started to straighten the foot out a bit more and now I’m back to walking normally with no limp.

I kept the foot dry to allow the little holes to heal and took my first, two footed bath a day later AND IT WAS GLORIOUS.

My activity levels still aren’t what they were before. Not least because my fatigue is still pretty bad. But I’m trying to do a bit more walking each week and hope I’ll be back to running in a few months time.

I returned to work part time, 50% hours for a fortnight and then 75% for another. Important lesson I have learnt – working 5 days in a row is not the one. With hindsight (and for the next foot), I’ll ask to work maybe 3 days a week and work my way up. I got very sick midway through my second week and had to take time off work, and I then ended up extending my part time hours because I don’t feel….right. The word fibromyalgia has reared it’s ugly head again but I’m not sure. Tired, poorly, achy, the usual.

I restarted my cosentyx injections in January (and wisely switched from a Monday to a Friday, thus making work on a Tuesday a less awkward experience for me….we’re talking unpleasant side effects. If you know, you know) but so far don’t feel like they’re working at their optimum level like they were before. I have the smallest two patches of psoriasis, which isn’t a problem and doesn’t bother me, but they exist, when they shouldn’t. Fatigue is still pretty high, but that could also be because of being off my feet for almost 3 months. I’ll be taking my third injection of 2019 in a couple weeks time and if by April I still don’t feel like I’m back to 100% then it’s time to phone my rheumy nurse.

The foot however is doing well, still bruised and puffy but getting slightly less sore with each passing week. I haven’t yet had the chance to try a ‘normal’ shoe on it because it’s still too swollen but early indications are that the op has done its job. The new toes do take a bit of getting used to though. They hit the floor every so slightly before the rest of the toes (we won’t even be talking a nanosecond, but see previous comment. I’m very dramatic) and it is a bit freaky to start with. Getting in to the shower really scared me. It felt like my toes had been inflated. The new toes were just….YUCK. Having said that, I’m almost used to it now.

Something else you don’t think about is how you get shoes on your feet. Normal feet, the toes bend and move to slip in to the shoe all by themselves. You don’t even have to think about it. Everything just does what it needs to do by itself. New toes minus the joint do not bend, and thus, you have to kind of shove them in. Again, once you’ve done it a few times it just comes naturally.

Otherwise, it’s all good. I’m just home from a long weekend in Newcastle. My foot didn’t fall off during all the hundreds of miles of driving and bar being a bit sore when changing gear, I survived. Home for a fortnight before jumping on a plane for my first proper holiday of the year (and so far, my only one planned. Must change this. I have just over 8 weeks holiday from work this year) and back to studying for my second year of Open University, which is taking up a lot of time which could otherwise be spent reading.

Any ideas on how to make driving more comfortable? How to differentiate between arthritic pain and non-arthritic pain? How to keep myself more motivated blogging?

Send all idea and tip and tricks for how to do the above, and generally survive life, my way!

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.

 

 

 

 

Hospital Anxiety

I hate hospitals.

I hate going to them even more.

I hate not knowing what I’m going to hear. Not knowing if I’ve gotten progressively worse. Not knowing what to expect. Not knowing if I’m going to see the nice side of my specialist or the nasty side. Not knowing if I’ll cry. Not knowing if I should go alone or if I should take support. Not knowing what’s to come.

I hate everything about them.

So if you couldn’t tell where this post was going…today I had my first appointment with my specialist since I started cosentyx.

I spent the day at work writing, then re-writing, lists of the positives and the negatives. Scared that I’ll forget something, that I’ll retreat in to my shell and panic and not know what to tell him.

Positives

  • Clear skin
  • Less stiffness
  • More dexterity in some fingers
  • Almost walking normally
  • Fatigue levels manageable
  • Green light from orthopaedics about having my toes straightened
  • 5 toes have had work on them in minor surgery, just the 5 to go.

Negatives

  • Perpetually full of cold
  • Ankle continuously swollen
  • Knee becoming swollen
  • Some fingers still so bad I swear they’d feel better broken in two
  • An elbow that has started to refuse to move
  • Anti-inflammatories not working
  • Orthopaedics will only operate on me when I can prove that my symptoms are under control. Which they’re not.

Do I go alone? I’ve always found my specialist was less of an asshole when I went alone. But if I go alone I’m liable to forget most of the things he tells me. If I take someone with me, then at least that person can listen and give their opinion on how the appointment went afterwards and tell me any key points that I might have missed. But on each occasion I have taken someone with me, Dr Evil has been vile and I’ve ended up in a heap of tears every time. What if I have to go for testing and x-rays and all manner of procedures and I’m by myself? If I ask for support, does that make me weak? If I expect support to be given without asking, am I being needy?

So I went alone. Not least because it’s a logistical nightmare trying to leave work without leaving too early and then picking up my hospital buddy and driving there and getting parked and oy the struggles. But also because each time I go alone I get a little stronger. At least this is what I tell myself. I am an adult. Adults do things alone. Adults don’t always have the support that they might want. Adults can go to appointments by themselves and cope.

But adulting is very hard.

I spend far longer worrying about how the appointment will go, and what the potential outcomes of each imagined situation will be than in the actual appointment itself. I spend too much time worrying that I’m not sick enough to warrant the attention. That maybe the symptoms are still in my head as he made me believe for so long. That maybe those fleeting, infrequent new symptoms are the M.S I’ve been warned about. That it could also be fibromyalgia. That my inability at the moment to process food is caused by more than just a psychological worry. That maybe I am the problem. That maybe there are lots of problems.

I worry immensely about that dreaded weigh in. As someone who has always had problems with body image and weight, getting told what I weigh is hard going. I don’t weigh myself. If I don’t know how much I weigh, I can’t obsess about it and adjust what I eat, or don’t eat, accordingly.

But I keep those worries to myself. I’ve been told off one too many times at the hospital for talking about things my specialist doesn’t care about. That numbness in your hand? Not interested. The fact that sometimes you can’t remember how to spell your own name? Definitely not interested.

The appointment today?

It went….well. Although the nurse didn’t listen to me when I asked her not to tell me what I weigh. I am officially the heaviest I have ever been. This is hard to deal with and will take some strength to not act on. Like Ross Geller in Friends before me, when asked how much he weighs “I’d prefer not to answer that right now, I’m carrying a little holiday weight”.

I have the green light for surgery. It took a lot of strength not to cry at hearing this.

My inflammation levels are no longer alarmingly high. Just high. Which is good. Increase some meds and it should continue to subside.

“Keep going as you are, I’ll see you in 6 months….You even look like you’re doing very well Rebecca”. Words I never thought I’d hear him say to me. My specialist was almost nice to me.

The anxiety has gone…for now. Only to reappear when the next appointment letter comes through my door I am sure.

But right now?

My bags are packed. My flights are booked. I’m going home for a few days to put my worries behind me. To spend some well deserved time with my Sister. To give my city, the city that made me, the love it deserves. To spend a few days being me. Just me.

 

The Greatest Instrument You’ll Ever Own

“Enjoy your body
Use it every way you can
Don’t be afraid of it, or what other people think of it
It’s the greatest instrument you’ll ever own”

I sit here, at my work desk, listening to a song that I haven’t listened to in a very long time. A song that has stuck with me for nearly 20 years, Baz Luhrmann: Everybody’s Free (To Wear Sunscreen), the lyrics of which came from a 1997 column written by the journalist Mary Schmich.

I have had a life long love hate relationship with my body. Your body is one of these things you take for granted. We all do. It’s something you never really, truly appreciate until it’s not the same anymore. As with most girls, I wasn’t exactly a big fan of my body when I was in my teens. I have starved my body beyond any recognition. I have abused my body in more ways than I’m currently strong enough to admit. I have purposefully hurt myself. I would wake up in the morning and cry because of how I looked. Or how I perceived I looked. These negative thoughts came with me in to my early twenties.

It was only in my late twenties, when I was at healthy weight for the first time in my adult life when I really started to appreciate my body.  That I realised my body was, as the song suggests, the greatest instrument I’d ever own. It took me on long, hilly walks across the wild Scottish countryside. It took me around the country running. My legs travelling vast distances. My lungs and heart working overtime to keep me going. I’d never taken the time to thank my body for all that it allowed me to do, until it was too late.

Until my legs couldn’t move. Until I couldn’t put one foot in front of the other. Until even breathing took so much effort it would bring me to tears. When constant inactivity, coupled with the constant eating and the odd course of steroids would cause me to gain weight, I went back to hating my body. Self-care went from treating myself to a facial to remembering to brush my hair. I would bury my body under baggy clothes, so people couldn’t see me. I didn’t want people to look at me, trying to see the disfigured joints. Trying to see what was wrong with the girl who couldn’t lift her feet off the floor. The one who kept her head down and shuffled. Don’t look at me. Don’t look at this body.

My body had let me down. And only then, when I could no longer use it, did I realise how much I should have enjoyed my body when I had the chance. That I had been given a second chance of appreciating my body.

Now, I have a body that continues to react well to cosentx. A body that is about to take me to my 30th birthday.

I never, in my wildest dreams (or nightmares) imagined that at 30 years old, I would love my body. I never imagined that I would accept my little rolls of tummy fat. That I would wear a bikini and not give a damn how I looked. I never thought I would spend most of my days make up free. That I would no longer worry about what complete random strangers would think seeing me without a full face of make up. Even though they’d never see me again. That I would wear my glasses full time and not bother with contact lenses like I used to because I thought they made me look prettier. That I would actually LOVE myself with glasses. That the thought of wearing contact lenses would be horrifying. I never thought I would appreciate going for a short walk. That even that would be an accomplishment. That walking 100 meters would be great. Way to go body! You the best!

This creaky body has taken me around the world, to places I could only dream of visiting. It has taken me 13.1 miles around the Great North Run half marathon. It has taken me to weddings, to parties. It has taken me on road trips, on last minute trips abroad, without a care in the world. This creaky body has introduced me to me. This creaky body is about to take me on the greatest challenge I have ever tackled…..The London Marathon.

It took aggressive arthritis to teach me to love and appreciate my body. The irony.

I wish I could go back and tell my 14 year old self to love herself just the way she was. To tell her that at (almost) 30 years old, she would be not only content, but happy, with exactly how she is.

So remember, arthritis or chronic illness and all, your body really is the greatest instrument you’ll ever own. Thank if often for achieving the little things we take for granted. Don’t be hard on yourself. Don’t worry about other people. Celebrate every little achievement, no matter how small it may seem. You live your own life, and give yourself a pat on the back. You deserve it.

The Hardest Thing I’ve Ever Written

When I write and publish a blog post, I am often praised for being open, honest and brave. From friends who text me to complete strangers who reach out to me, the support I receive after each post always features those words. I have often found this hard to understand, because for me, I am merely being myself and I don’t see myself as any of those things because I’ll talk about and share anything!

Nothing feels off topic. There isn’t anything that I wouldn’t talk about. What I write about in my blog about my struggles with my arthritis are exactly the same conversations I have with the people in my life on a day to day basis. I am a total open book.

Or am I?

Because there has been one topic that I haven’t yet tackled. One issue that I have struggled to tell anybody about at work (just two people know). Something that only a handful of people closest to me in my life know about (just the seven people). And why is this? Because I haven’t been open enough. I haven’t been honest enough. And I certainly haven’t been brave enough. Until now.

We live in a society now where we are encouraged to talk about mental health. We all have mental health, both good and bad. But we still live in a world where it takes a lot to stick your head above the parapet and say “Hey, I’m struggling”. But I’m big enough and old enough and ugly enough to be that person.

So here we go.

My name is Rebecca, and today I had my 6 month review of my first ever course of anti-depressants.

There. I said it. It’s out there. Do I feel better for it? I don’t know.

I should start by saying that I don’t need to make this blog post and I don’t even need to share with you all what’s been going on. But I am going to because I do have the strength of character to share and to put myself out there and because I know there will be a lot of you reading this who have been going through the exact same thing and have maybe felt alone and maybe even a sense of shame about it. But also because writing has been my form of therapy and saying all of this ‘out loud’ allows me to accept it, embrace it and crucially, move on.

So. How did this come about I hear you cry?

Well as anybody with a chronic illness can attest to, waking up one day sick, and realising that you will never, ever EVER get better is quite a hard thing to take in and to accept. And I neither took it in or accepted it.

The first few months after my diagnosis were not easy. I was upset, tired, confused and scared of what the future would bring. Who wouldn’t be! I could barely walk and I had never in my entire life felt pain like it. So I got signed off work by my doctor for a fortnight and it was the best decision I ever made. It gave me time to research psoriatic arthritis, to rest, to sleep, and even to see some of my friends all of which perked me right up. The anti-inflammatories I was prescribed started to kick in, I was walking again, heck, I even ran and entire half marathon!

I started on methotrexate the week after the half marathon in mid September. I had such high expectations! It should help your joints and clear your skin I was positively told by every medical professional I met! Life will go back to normal!!

Only it didn’t. The methotrexate didn’t work. My skin became worse. More joints became inflamed at an alarming speed. The dosage was increased. Still nothing happened. The pain became unbearable. The higher my dosages went, the worse my fatigue became. I would take the methotrexate on a Friday and literally spend the entire weekend in bed. Either asleep, or crying. I couldn’t be trusted to drive when I was this fatigued. I couldn’t go out of an evening because I literally couldn’t do it.

By the November I became withdrawn, quiet and a shadow of my former self. I didn’t want to talk to my boyfriend so what little conversation we managed was mainly me moaning, crying or shouting at him. We had just purchased our first home together, were living with each other for the first time in our 5 year relationship and the poor boy had just had a pacemaker fitted, he really didn’t need to have to deal with Moaning Myrtle too. Sorry Jack.

Christmas was a DISASTER. I spent the entirety of Christmas day in floods of tears. I refused to speak with Jack on the phone. Sorry Jack. I couldn’t eat, I couldn’t speak, I just wanted to cry. I hurt, I hated my life and I hated everybody in it. I was due to travel to see Jack and his family on Boxing Day and I refused to go down. Sorry Jacks family. I wanted to just stay locked away in my room with my cat and never see the world again.

New Year came around, and my methotrexate dosage increased not once, but twice. I was now at rock bottom. My fatigue was now so severe that I couldn’t work on a Monday morning because I was still recovering from the Friday night. How life can change! I used to spend weekends recovering from wild nights out, a wild night out now consists of going to bed past 9pm!

April came and I didn’t recognise myself anymore. Not in any way. I didn’t wear make up, I barely brushed my hair, I took no effort in my appearance at all. I didn’t speak at work, I didn’t smile, I stopped laughing. My arthritis was not only any better on the methotrexate it was getting worse and worse and worse. As was I on a personal level. I was at rock bottom  And so, one Saturday on a shopping trip with my Mum, I said the words “I think I may be sad and I think I need some help”

Over a cup of tea.

In Greggs.

GREGGGGGGS.

For Gods sake why couldn’t it have been somewhere classier? Literally my one and only time in a Greggs and it had to be the setting for the most important conversation of my life.

Anyway I digress. My Mums response was “Yes, you are”. So I told her I was going to go to the doctors and she reassured me I was doing the right thing. I told boyfriend the exact same thing, he had the same response as my Mum. I clearly surround myself with very similar people.

So off to the doctors I went. Jack kindly and selflessly left work early and accompanied me to my appointment. Only to be left in the waiting room by himself because I decided to go in alone. Sorry again Jack, nothing personal.

“I’m not depressed. I’m just struggling to cope with this situation. With my body. Struggling to cope with life right now. I just need a boost to get me back to who I was and then I’ll be ok”

And that was it. 20mg of fluoxetine a day for 6 months and you’ll be back to your normal fabulous self. Within two weeks my appetite had completely disappeared and I suffered my first of a serious of crippling panic attacks. Side effects clearly listed in the 10 foot of leaflet but scary nonetheless. Appetite quickly came back. *Sigh*.

But then I also started to come back.

A hairbrush here. Some nail polish there. I came off the methotrexate in July and my energy increased. I started to cope with normal, everyday situations better. I was no longer a crying mess unable to cope with even the simplest tasks. I started to come out of my shell again at work. I started to talk to Jack again. He possibly preferred me when I had less to say. Sorry Jack. You just can’t win. I wasn’t unnaturally happy (heaven forbid) but I was normal. As normal as I could ever be.

So now I feel almost strong enough to take on the world again. As my arthritis continues to cause me new pains and new problems, it isn’t to say I won’t have the odd wobbly moment, but I know I can cope. If not cope perfectly, but cope better. When asked today how long I’ve been told to wait before my new medication, cosentyx works, my response was “how long is a piece of string” so I’m going to stay on the pills until Christmas to get me over the first few weeks of self-injecting cosentyx (coming to another blog post to you soon) and to see how my body responds, I think that’s the best thing for me.

So if you’re reading this and you feel a little less alone, feel a little bit like you’re not the only one who has these feelings, that you’re not the only person going through it or a little bit closer to admitting to yourself or others that you need a bit of a pick me up then I’ll know that finding the strength to put myself out there has been worth it.

The 5 things you know to be true if you have scalp psoriasis.

I have sadly suffered from severe, chronic scalp psoriasis for nearly 14 years. It was until this year the only kind of psoriasis I had. It is the bane of my existence. I hate it. I spend approximately 99% of my life scratching my scalp. There is a 0% chance that my previous sentance was exaggerated. I have only been completely clear once in those 14 years, and that was last November when I had two steroid injections in to my left ankle and knee. I was clear for a grand total of 4 days, and I suffered non stop from painful phantom itching. Just can’t win.

So for todays blog post I’ve decided to talk about the 5 things you know to be true if you have scalp psoriasis. If you have additional truths then please let me know and I’ll incorporate them in to a future post!!

  1. “Sorry I can’t come out tonight, I’m washing my hair”

This takes on a whole new literal meaning when you have scalp psoriasis. You get home from work, you apply whatever smelly/awkward/useless treatment you’ve been given and leave it on for an infinite period of time. An hour? Overnight? (I once left coconut oil in for an entire weekend. It’s been yonks and I still have the greasy hair to prove it). Then you have to wash it out with one of your many shampoos. If you’re feeing extra fancy, you’ll rinse and repeat. If like me you absolutely hate the small of coal tar and most medicated shampoos, you might even use a ‘normal’ shampoo to mask the smell. Then there’s conditioner. It doesn’t end there. You get out of the shower, you might want to leave your hair to dry naturally for as long as possible so as to not to aggravate it with a hairdryer. This will result in you looking like Hagrid but at least this is better than looking like Voldemort. (This will also mean that you spend more time wearing a hair turban than you don’t. I’m unrecognisable without mine on.) Then there comes the removing of the plaques. Maybe a nice gentle scratch here and a brush of the scalp there. Once this has been completed, a good 18 hours could have passed. Go to sleep. Work. Come home and repeat. Daily. So yeah, I don’t know what day it is you’re inviting me out, it could be 100 years in the future but I can guarantee I will actually be busy. Washing my hair.

  1. People who say, “Have you tried head and shoulders*?” are not the kind of people you need in your life

This will apply to everyone from hairdressers to work colleagues to friends, family and complete strangers on the street. The first time you hear this, you might smile it off and say “Thanks, I hadn’t thought of that before.” When you have heard it for the 3648267242 time though, the smile will have slipped. Your face may start looking incredibly angry. Smoke may start escaping from your ears. You’ll grit through your teeth “I don’t have dandruff, I have scalp psoriasis” and then you’ll walk away before you punch the person in the face. The last hairdresser I saw kept pushing head and shoulders on me. I smiled, gave some kind of sassy response, and never returned. I don’t need that kind of negativity in my life any more than I need head and shoulders, and neither do you.

*Other similar, but also completely useless brands of anti-dandruff shampoos are unfortunately available for you to be told to buy.

  1. Brushing your hair, especially after a good scalp scratch, will result in more snow falling to the floor than snowflakes fall on the North Pole in winter

Flakes. Get. Everywhere. My little cat has been known to have my scalp flakes on her after I’ve had a particularly good scratch. Flakes will get EVERYWHERE. You won’t even realise just what a quantity of flakes your scalp can produce. I’m pretty sure if I was to collect the flakes on a weekly basis they would weigh more than me. Connected to this is the complete and utter fear that wearing black will bring to you. Scarier than a clown chasing you down a dark street, having to brush your shoulders off because they now look like you’re wearing white shoulder pads is pretty horrifying. I’m yet to find a way to laugh this off. If you know of one, send it my way!

  1. You will buy and own and try more shampoos and treatments than your average hairdresser

Each will promise to relieve the itch, the flaking, the indignity of it all. You purchase the product, your heart full of excitement and anticipation for just how life changing it will be. You’ll be able to wash your hair just a few times a week like a normal person! You’ll have a social life outside of the bathroom again! Think of all the black you’ll be able to wear!!!!! Alas. At best it’ll work for a minute before it becomes ineffective and shoved to the back of your bathroom cupboard, where all the failed products go to die. You won’t throw them out though because you still live in hope that one day it will work. That’s just the kind of optimist you are.

  1. You will appreciate a good vacuum cleaner

You may even own more than one. A good old upright and a cheeky little handheld one. As number 3 alluded to, your scalp will flake a lot. This will require a lot of vacuuming. Especially after brushing your hair/tying your hair up/a simple shake of the head.  Sometimes one vacuum a day just doesn’t cut it. You may, like me, even take to vacuuming your bed every morning before you make it. To people with normal scalps this must seem bizarre, but to those of us in the know, you’ll know how satisfying it is to see the flakes get sucked up by the vacuum cleaner. Sad and true, but so very satisfying.

 

Please let me know what you can relate to and what makes you laugh, moan and cry about your scalp psoriasis!

The 5 things I wish I’d been told when I was newly diagnosed.

It’s been 18 months since I developed Psoriatic Arthritis and 14 months since my diagnosis. I don’t think I knew anybody who had arthritis. I didn’t really understand what it was. What it is. I didn’t know that people my age, and a lot younger could be affected so terrible by this terrible condition.

I had nobody to turn to. Nobody to ask advice. Nobody who I could relate to. I had a terrible medical team who threw a few leaflets my way and expected that to be sufficient. I feel very much that in the beginning I had to make it up as I went along, with varying degrees of success.

I eventually discovered a whole community of people who suffer from chronic illnesses and disabilities through Instagram. Though these people are not directly in my life I take a lot of strength in knowing that there are others out there like me. But my experience of feeling lost in this world of chronic illness was what led me to blogging. Especially when it comes to Psoriatic Arthritis, which is so poorly understood or even known about.

So in todays blog post I’m going to list the 5 main things that I wish I had been told when I was newly diagnosed. I hope that some of you can relate and I’d love to know what you wish you’d been told when you were first diagnosed with your chronic illness.

  1. You will feel overwhelming grief
    This one was a hard one to get my head around.  The first few weeks after my diagnosis I couldn’t stop crying. I kept thinking about all the things I could no longer do. I couldn’t run, which was my favourite thing. I couldn’t go out dancing. I couldn’t do the things that made me happy. The things that made me, me. They were gone The old me was gone. All I could think about was the things I probably could never do again. The things that I was going to do in the future that I would no longer be able to do. Thinking about things that I’d never even considered doing but now I couldn’t do them it destroyed me. I grieved. For a very very long time. For who I was. For my old body. The Rebecca pre-diagnosis. She’s gone. She’s never coming back. I still find that hard to come to terms with even now. But the grief for your body and your life pre-diagnosis is perfectly normal. But never spoken about. I have never heard any kind of health professional mention it. But it was the first emotion I ever went through. An emotion I’m still going through. But what I have learnt though is that the grief doesn’t have to be all negative. The process enables me to accept who I am now. Saying goodbye to who I was and hello to who I am now. My new life. My new body. The new Rebecca. So if you feel grief, don’t beat yourself up by thinking you shouldn’t feel these things. Feel it. Live it. Cry it out. Scream it out. But say hello to the new you, give yourself a big hug and know that you’re still the same person you were before.
  2. You will feel sad
    Similar to the feeling of grief, you’re likely to feel sad and again, this is perfectly fine!! I spent an entire year feeling sad before I could admit it. I called it my ‘situational sadness’. I was sad because of the situation I found myself in. Sore, stiff, off work, stuck in bed, depressed. I tried to fight it for so long. I thought I was supposed to just get on with things as they were before. It never occurred to me that I was ok to be sad because I had arthritis. But of course I was! It’s ok to cry. It’s ok to say you’re not as happy as you were before. It’s ok to admit this to not only  yourself but other people! Sadness isn’t a weakness and ultimately, sadness will pass. If you want to cry, cry. Sometimes that release of emotions through crying is all you need to feel better.
  3. Painkillers will be your best friend
    I never knew I could hurt so much. I didn’t know what pain was. Doctors and specialists will talk to you about what medication to take but they don’t tell you that sometimes you’ll be in so much pain you can’t even get out of bed to go to the toilet. I felt like I had to just suck it up and get on with it. I was so busy thinking about the pain and the limitations it was giving me it didn’t always occur to me to take painkillers. But you know what? PAINKILLERS CAN BE AMAZING! Don’t feel guilty for taking them. Don’t think that they make you weak. Don’t think that you shouldn’t be taking them and that you should try and be brave and fight through it. Take them painkillers. Keep some with you at all time because you never know when you might need them. Painkillers will become your best friend. Love them and they’ll love and help you back.
  4. People will annoy you
    I could make a whole blog post just about these people. I may well go on to do so. Be prepared to hear “you’re too young for arthritis” “it could be worse” and “ahh I’m sure it’s not really as bad as you say”. I’m not too young, it’s already pretty bad and actually, I only tell you about the tip of the iceberg. These people will annoy you. You know who else will annoy you? People who know what’s caused your condition and know just what can cure you. “It’s because you drink milk, become vegan and you’ll be cured!” “I sell products through my pyramid scheme business that will cure you” “Have you tried taking a supplement for joints? I had a sore knee once and since I started taking these tablets it hasn’t come back”. Whilst I’m sure a lot of these people do mean well, it really annoys me. I don’t care if your friend ‘has it worse than me’, you don’t know my situation. Also, I’m going to eat and drink whatever the hell I like. NOTHING caused this. NOTHING will ‘cure’ this. Learn to smile at these people and give them some kind of sassy, but polite response.
  5. You will be ok
    That’s right, you will be! It might not feel like when you’ve just been diagnosed, and there’s no real telling how long it will take for you to get there as everybody is different, BUT YOU WILL BE OK. You will smile again. You will enjoy life. You will laugh and love and have fun. You might be a bit slower than you were but the good times will return. Embrace the new you. You’re ok.

Why me? Why not me!?

“Unable to use my left thumb, which is swollen beyond recognition. Unable to apply much strength with my right hand because my wrist is too weak. Worried sick that my ability to write will soon be gone.”


I wrote these words in my last blog post on September 5th.


It is now the 19th October. I am off work, off my face on tramadol, having lost the ability to use 6 of my fingers and my wrist. My worst nightmare did come true. I cannot write. I cannot squeeze toothpaste out of the tube. Open doors. Flush toilets. Turn the key to open my front door. I can only type and text with two fingers. Even stroking the cat brings me to painful tears.


How did I get here so quickly? Why have my fingers given up on me, one after the other? Why am I still medication free after 10 weeks? Why so many questions?


Since my last blog post, the steroid shot did eventually kick in. I regained my strength, I was walking a lot better, moving a lot more freely. I came out of the flare. I don’t know exactly when I came out of it because it happens so gradually it’s hard to pin point the exact moment. But I did. I became pretty much normal. Life became normal again. I became normal.


But that pesky thumb was always there. Always getting that little bit redder. That little bit more inflamed. I wore a thumb and hand support. I can’t say it made much difference. But I was able to get on with life.


Just over a week ago, out of the blue, both of my hands, all of the joints, everything, hurt. And I mean really hurt.


Last week I flew down to London to visit my Sister as planned but knew this was the beginning of the end for my hands (Dramatic? Moi? Never!)


And so it was. I returned to work 3 days ago struggling to do even the simplest of tasks. Yesterday I managed to get a doctors appointment because I couldn’t bend my fingers. I was an emotional wreck. I got to work after my appointment and last for one hour before I was sent home because I couldn’t stop crying. Why is this always happening to me? Why couldn’t I have a slow onset of arthritis? Gentle pains for many years before it becomes a concern. Why, like my toes, does this has to rapidly happen, one joint going straight after another. I think I have only my spine now unaffected (coming to a blog post near you soon maybe?….Help! I lost my spine!)


Why me?


Such a truly horrible question and I one that ordinarily I hate. Generally in life something is either going to happen to you, or it’s not. Arthritis happened to me. I should embrace it and get over it. But in these low moments, where my body is changing beyond recognition and having an impact on everything, it’s hard not to think ‘why me’ and I hate myself for it. Having no control over your body, no control over you future, no control over your present even, is terrifying. To go from being up and running around the streets of London like I would have done before I became sick, to being bed bound, wincing even just trying to drink from a bottle of water is devastating. I don’t deserve this. You don’t deserve this. Nobody deserves this. But trying to come to terms with the fact that I am dealing with this, and will be every day for the rest of my life is one of the biggest battles.


Maybe I need to ask myself why me, and look for the positives. Why me? Because I have the strength and the honesty to admit that life can be utter rubbish. To be brave enough to put myself out there. Because every time I post a personal photo or blog post I am overwhelmed with people getting in touch with me to say that they can relate to me and that they feel that little bit less lost knowing they are not alone. Maybe I should use this terrible opportunity to my advantage? How, I don’t quite know, but I’m sure I’ll work it out eventually.
I am now on tramadol. I am unsure what I think about it so far because I actually feel in more pain than I did before I started taking it.


Some positive news was that 3 weeks ago I saw my horrible rheumatologist, who was so horrified by how bad my joints and my pesky psoriasis had become I was given the go ahead for Cosentyx, a stage earlier than most people get it. Some negative news is that I haven’t even heard from the nurse yet about getting my first dosage so I imagine I’m going to be waiting another 3 weeks before I even get that phone call.


Where to go from here? I’m off work today and tomorrow, taking the time at home to become used to the tramadol and to have a bloody good rest. I’m still emotional. I’m still overly dramatic. But I always have been, why change now!


So what I’m going to do is a run a hot bath full of Epsom salts, I’m going to have a nice long soak and I’m going to ask myself why me, and answer with all of the positive reasons why. I’ll let you know what I come up with.

Send Help. And Cookies.

Since my last blog post, a lot has happened. So much, I’m not even sure I know where to begin.

I came off methotrexate. Within 2 days I went in to the worst flare I have ever had. I was back to being practically bed bound. Swelling, stiffness, more swelling, more stiffness. The pain was intolerable and sadly, the arthritis undeniably both felt, and looked, like it was spreading to new joints, including a thumb and a wrist.

So I started sulfasalazine. Full of hope. Maybe this medication would be the one! Only it wasn’t. Despite having very few side effects after my first couple of dosages (mild headache and nausea) I broke out in such a severe reaction head to toe rash that I was taken off it immediately only after 6 days.

Only it wasn’t a rash.

It was psoriasis. And I am now covered, there is hardly an area of skin not affected by plaques. Hands. Feet. Both legs. Both arms. Boobies. Bum. Torso. Tummy. Face. EVERYWHERE.

I am now medication free. Covered in psoriasis. Unable to use my left thumb, which is swollen beyond recognition. Unable to apply much strength with my right hand because my wrist is too weak. Worried sick that my ability to write will soon be gone. My right foot, untouched by arthritis, now rapidly affected in each and every toe. A failed trip to podiatry in which the woman called me a liar and made it clear that she would go out of her way to prevent me having the surgery I both need and want. A comical trip to the doctors for a steroid shot which ended up with me going on a tour of the Aberdeen pharmacies, nobody knowing which pharmacy I was supposed to go to. A call to NHS 24 late one Friday night asking them to administer a direct to joint steroid shot to my ankle as it was so swollen it had absolutely no movement, only to be denied because shots are only available on a Wednesday (Lol wut?!) More time off of work. More time asking people for help. More time spent crying and feeling sorry for myself and feeling utterly fed up. More time spent locked away in the flat, not able to face the world. More time asking JP for constant reassurance that I’m ok. That I’ll be ok.

But coming off of methotrexate was the correct decision. Right? I have to keep telling myself it is. It was.

Who knows. I certainly don’t know. I can’t make sense of any of it. I don’t know if I’m coming or going most days. I’m barely getting by. I have still 4 weeks until I go back to rheumatology (to see Dr Evil Liar, but that’s a whole nuther story) and I can only hope that better medication is offered to me. Physically, and mentally, I cannot continue like this.

It is not all doom and gloom though. My Mum (also a cripple) and I enjoyed the most fantastic holiday in Slovakia and Austria and if you’ve never been to Vienna you really should. We were overwhelmed with help and support from people across the entire city. My bedroom was finally decorated. A fantastic day was had by all at the Braemer Gathering. Sure the payback for all of this has been immense, and trying to balance out what energy I can expend v what I should conserve is still a constant battle, but again, I’ll get there.

If anybody has had similar experiences after methotrexate, sulfasalazine, rapid guttate psoriasis break outs then pleaseeeeeeeeeeee get in touch with me and give me your advice!!

In the meantime, send your healing thoughts. And send cookies. Cookies make everything ok.