Guess who’s back….back again

Hello much neglected blog,

I feel like I start every post with a ‘why I haven’t written anything in months’ introduction. As always, I have little excuse other than sheer laziness.

To summarise.

I turned 31. Although if anybody asks, I’m 29.

I took a much needed break to Liverpool and loved it so much I’m house hunting and job searching online as we speak. I took my Mum away to celebrate her (early) 60th birthday. Neither of us had ever been before and it was amazing. We started by going to Crewe to watch Crewe Alexandra v Plymouth Argyle (our team) in the opening game of the season and the lovely Alex gave Maw a wonderful halftime birthday shout out. And we won 3-0. Great day all round. Shame about Crewe but no day can be entirely perfect. Then on to Liverpool where we did everything Beatles related. I actually cried stood next to the Penny Lane road sign. And I don’t know why. I don’t even like the song. It was a week of tears because I went on to sob, violently, at the Museum of Liverpool at the John and Yoko exhibit and again, I don’t know why. John’s my 4th favourite Beatle. I wasn’t even hormonal. I was just an emotional wreck. As a lover of architecture, seeing the Royal Liver Building had me welling up. Trekked over to Port Sunlight to see a collection of Rembrandt (my favourite artist) sketches on loan from The Ashmolean and I was so moved by the sketch of him and his wife Saskia, a sketch I have read and studied so much about, that seeing it in front of my eyes, yep, you guessed it. I cried. My Mum is an incredibly patient woman. Also helps that she has a constant supply of pocket tissues in her bag. We ended the trip by going to Morecambe (again, 10/10 do not recommend) to see the statue of Eric Morecambe. My favourite. I will never get tired or bored of watching Morecambe and Wise. I almost cried. But unfortunately, we wanted to get out of Morecambe as quick as we could. So instead I sang Bring me Sunshine at the top of my lungs and got straight back in the car and on my way to civilisation.

I wanted to hate Liverpool, what with being terribly Southern, but I couldn’t. Between us we couldn’t fault a single thing. It was great, it was beautiful and the people went out of their way to help us (Mother has very visible mobility issues. Apple doesn’t fall far from the tree). Woman had a great time away which is all I could ask for. It wasn’t quite the 60th birthday in St Petersburg she had suggested (she was very easily influenced watching the World Cup in Russia), but there’s always next year for that.

House hunting has gone up a notch anyway as I prepare to say goodbye to the flat. 11 years is too long in Aberdeen. I’ve had enough. I’d had enough after a week. I’ve done well to last this long. Until recently it’s always been Edinburgh that the search has focused on, but I don’t think the budget will stretch to buying what I want….Liverpool however….watch this space.

I received the date for my second foot operation (30th August) which can’t come soon enough. This does mean that I have now stopped injecting cosentyx and my knees are already screaming out in pain. No inflammation so far, so I’ll keep my good fingers crossed that it remains that way. I’m in two minds about starting again due to the crazy weight gain that is continuing to occur. I started my cosentyx journey almost 3 stone lighter than I am now. And it shows. And I feel it. And it’s 100% down to the injections. Will discuss with my rheumatologist at my annual review in a few weeks time. Otherwise all is ok. ‘New toes’ feel quite achy but generally feel ok. Did I ever write about the fact I broke one of them? I forget. Good times. It’s more general aches and pains that I feel of late. I guess this is what comes with old age, what with being *29* and all.

Having said that, my fingernails are riddled with psoriasis again, and have been for a while, and I always find my nails to be an indicator of my arthritis in general. Bad nails = bad arthritis. I’m out of ideas with what to do with them. I keep them super short, I gently buffer away the ridges, but still they get worse. Even when the nails are super short it doesn’t stop the psoriasis from destroying what little is left. Any ideas? My GP won’t refer me to have them permanently removed (believe me, I have BEGGED) unless it comes to that last resort. But I’m fed up of them. HELP ME.

I got a new phone which I still have little idea how to use so for every message I’ve potential deleted without replying, or which didn’t transfer over, my sincerest apologies.

Molly cat had to have 4 teeth removed and was a very brave girl. But apparently so sassy she ripped out her IV drip within 10 mins of coming round. That’s my girl.

Been absolutely stressed to the max with a lot of life happening at once. I can’t wait for 2019 to be over so I can start 2020 afresh. And just when I thought I couldn’t get any more stressed or flustered, I’ve been called for jury duty. Exactly 6 weeks after my op. Pin pull and sheriff court. What a time to be alive.

Work is still mind numbingly dull and unfulfilling but I’m yet to work out what I want to do (or can do) instead. Although it’s debateable just how well I can do my current job anyway. I feel like my brain is wasting away in this office. In this job. In this industry. If you have a job for me, send it my way. I make a very good cup of tea.

I’ve read 40 books already this year. Another sign I should get some friends.

I passed my second year of Open University. Just. Heavy, heavvvvy emphasis on the just part with relation to the exam. Not my finest moment. However, I passed politics as a whole strongly and am now onwards to philosophy. Much excite.

After 13 years since I turned my back on it (long story, it involved me passing my driving test and buying £20 of pick n mix from Woolies to celebrate, very retro) I’m making the transition back to being vegetarian. I hate waste, so I don’t want to chuck the meaty food I already have, hence it’s a transition, but it means what I’m buying going forward is veggie.

I’ve stopped wearing make up because my skin has been in terrible condition and I *finally* feel a little bit more like myself in general. I’ve started to wear clothes that feel a bit more me. Dodgy outfits as documented on my Instagram. And if you don’t follow me, why not? I’m very funny. Today I look rarther fetching at work in a pair of black polka dot joggers and a grey nasa hoody. I haven’t showered or brushed my hair. It’s a strong lewk. I dyed my hair purple but because I am the worst at anything to do with hair care it became ginger due to the bleach pretty quickly. But. I discovered toner. And it’s now a purple auburn. And I aint mad at it. I look less pale if noting else. It’s a slow process, and I’m still trying to get my head around being 2 dress sizes bigger than I’m used to, but I feel…better. A lot of the dress size expansion should be attributed to the fact that for the first time in my entre adult life I have boobs. And not just boobs but massive ones. I’m not a fan. I miss living life like every day was pancake day.

If there is one thing I’m not very good at, and I hate myself for it, is that I’m not very good at maintaining friendships. I am by nature a pretty solitary person, I like being alone and I like my own company, and I tend to want to be by myself than be with other people. Even my favourite people. It’s not personal, it never has been, I just can’t explain it. A born introvert (hard to believe, but true) I was probably the only teenager growing up who’s mother WISHED they would go out all night. Just go out Becks. Get out the house. Go out all night. JUST GO OUT. But I have tried very hard (well, maybe not very hard) to try and spend time with my friends. This year I’ve had my two best pals from Uni come to stay and I hope they’ll be back soon. Friends round for cuppas. I’ve even made friends at work. This is a big deal. I am reminded of the expression that best friends are like stars, you don’t always see them but you know they’re always there. And it reminds me that I have out there, in this big wide world, a select group of people, one in particular and she knows who she is <3,who I love more than life. I don’t see her often. We don’t speak often. But we don’t need to. Because it goes deeper than friendship. So I’m going to keep working on myself and working on keeping these priceless friendships going.

Man, that got slushy quite fast.

And other than that, things are much the same as they ever were.

Still always debating whether or not to continue with the blog. Given how life is less arthritis-y and medication-y it seems a bit….futile? I don’t know.

I disabled my facebook page for a while, which was great, only it meant I disabled the blog facebook page as well. Does anyone know if I can keep the blog part and not the personal part? It’s such a life zapping pointless app to me now. Says she, who loves Instagram. Nobody is perfect ok.

And that, ladies and gentlemen is a wrap. I make zero promises about another blog post any time soon but I will try and document my foot surgery a bit better than I did last time. 2 weeks today.

Bye.

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.

 

 

 

 

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

 

 

 

 

 

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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Who am I? What’s my name?

It’s been quite a while since I last updated my blog.

In my last entry I wrote about my ongoing struggle to overcome bouts of severe depression caused by the sudden onset of my arthritis.

Since then a lot has changed.

I started self-injecting 150mg of cosentyx. I had intentions of blogging weekly, providing updates of how I was getting on. But I just couldn’t bring myself to do it. Why? I was scared.

Allow me to explain.

My first cosentyx injection was a success. I successfully self-administered which is a big deal for someone who previously had such a phobia of needles and injections that even just thinking about a needle would cause me to feel dizzy and sick. I was, as expected, quite lethargic for the first few days afterwards, but I felt pretty ok.

It was just 3 days later that I first noticed a difference. The psoriasis on my forehead had pretty much completely disappeared. I thought I was imagining it, maybe I was seeing a clear forehead because I wanted to. A couple days passed and I realised my scalp psoriasis, which was chronic for 14 years, had cleared by about half. But still, I was too scared to say anything. What if it didn’t last? What if it was a temporary effect? What if this was a false sense of security, and it was going to flare up even worse? I didn’t want to tempt fate.

But then my Mum commented on how clear my face was. My boyfriend whispered in hush tones that my scalp was clear, also scared to jinx it. A clear arm followed. A leg. The other arm. The other leg. Within about 2 weeks I was completely psoriasis free.

Just let that sink in.

COMPLETELY.

PSORIASIS.

FREE.

But still, I was too scared to share this. For the first time in my entire adult life I could wash my hair like a normal person. I was no longer scratching an arm until it bled. No longer leaving a trail of flakes behind me.

It was quite frankly, overwhelming.

My body started to improve too. I wasn’t stiff. I could walk with ease. Heck, I could even jog if I wanted to. My right hand started to return to normal and I was able to shake work colleague’s hands in the run up to Christmas because for the first time in a long time, the pain of a hand shake didn’t bring me to tears. I could hold a pen and write in handwriting that almost looked like my own again. Sure, I was still pretty tired and perpetually full of cold, but you pick your battles.

I knew I’d been pretty quiet about my experience when my boyfriend asked me why I hadn’t blogged about it.

And now for the next conundrum.

I, for the second time in two years, no longer knew who I was.

I was going through an identity crisis. Again.

I knew who I was before I developed arthritis. I was a runner. I was an avid life lover. I loved to dance. I loved to travel, to do ‘stuff’. I struggled, for a very long time, to work out who I was with arthritis. I was no longer bubbly, cheery, no longer able to wear the same clothes or shoes, no longer able to run, to go out, to do anything I wanted. I withdrew, I no longer made an effort with my appearance, I gave up. I learnt about the spoonie community and wholeheartedly threw myself in to it on Instagram. I started to establish who this new Rebecca was. She was still there, just slower.

And just when I started to work out who I was, I changed again.

I have deleted pretty much all of the photos I shared on Instagram to do with my health. I started to dress a little more like my old self. I’m taking better care of myself. I had a haircut. I’m back at the gym. I’m training for the marathon. Yes, you did read that correctly. Training for a marathon. I distanced myself from the spoonie community. Thinking this would help me to feel ‘normal’. But even updating my blog doesn’t feel like the right thing to do and I don’t know why. I still have my arthritis, it’s just hidden right now.

It’s something doctors never tell you, is it? Identity crisis caused by a chronic illness. I knew I was feeling grief for my old life, but I never realised just how much I as a person had changed. How little I knew myself.

I sound really ungrateful for the cosentyx, and I’m not, not at all. It’s giving me a second shot at life. It’s just overwhelming. I’d almost finally come to terms with life in the slow lane, and suddenly, everything changes again. No wonder I’m exhausted.

So where do I go from here? I don’t know. I just don’t know.

Answers on a postcard please.

 

 

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 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.