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.

Short and Sweet

So little muffins, it’s been a while since I posted anything meaningful and this post shall be no different. Meaningless.

But short by my standards though so that’s good.

All those promised blog posts are yet to materialise due to being busy catching up with my Open Uni studies (why did I think this was a good idea again?!), numerous holidays, being back to full time at work and general life getting in the way. And by general life, I mean alternating between sleeping and watching RuPauls Drag Race.

I am now 12 weeks post pin pull. The swelling around the ‘new toots’ has subsided a fair bit but is still rather puffy and a little purple. With each passing week the pain has become less, although when I have stubbed them or caught them the pain has bought me to tears. Thank god for waterproof mascara. The best worst being when I went to step into my bath, didn’t bring my foot up high enough and smashed the toes on the side of the bath. The pain taking me by surprise so much I then proceeded to fall forwards towards the bath and fell in. Double whammy of pain and water getting splashed around the bathroom like an orca doing belly flops.

I am still slowly but surely trying to increase the amount that I walk and know that I need to focus on stairs a bit more (the rolling forward of the foot with toes touching the stair, still hurts). Set myself the daily target of 7,500 steps which is easier said than done when you’re office based. I’m not confident enough to start running again on them just yet because I think they’re going to smack in to the floor with such impact they’ll break. I could be being dramatic, but I suspect I’m not. Otherwise, the toes feel generally ok. They don’t feel like they’ve been flattened, the scarring has almost totally faded and I’m used to how they look. I am still wary to try on a normal pair of shoes though because I’m not emotionally ready enough to do this. Maybe I’ll wait until I’ve had the right foot done too I can wear a pair. During the immediate weeks after the op, and a few after the pin pull, I had doubts and regrets that it wasn’t worth it. I have to believe that it has been worth it, but only time will tell. Still only wearing trainers and my doc martens though. Looking forward to wearing something different (Please, Dr Roberts, if you read this, schedule my second op in soon. I promise I’ll behave this time.)

Being full time at work is exhausting. Lots of decisions to start making with regards to staying full time, going part time or leaving work altogether. It’s only money, right? I’m having to get up from my desk and have a little walk around roughly every 20 mins to stop my body seizing up. There’s only so many times you can get a cup of coffee or go to the toilet before people start thinking you’re a caffeine addict who can’t stop weeing. There’s only so much self-delusion I can try and kid myself with before I have to admit that both of the aforementioned statements are true. Despite being caffeine intolerant. That’s why I drink it so much. It makes me nuts. Shaky and nuts.

Also think I might have carpal tunnel which is high on the list of things I could do without and also on the list of things I thought only old grannies got. Yet another example of being 30 years old with the body of a 90-year-old. Although carpal tunnel could mean an operation and operation means time off work. So I’m cool with it. Does mean I have to continue my Ali G booyakasha impression to relieve the pain though which try as I might, I can’t make it look ironic.

I’m now three cosentyx injections to the good this year and they’re finally starting to kick in. No psoriasis, no inflammation, just the occasional odd sore and stiff creaky joint which could be more to do with old age (trolol) than arthritis. Now to hit the fatigue on its head and I’ll be back to being unstoppable.

In other news:

  • It’s coming up for one whole year since I ran the marathon. Still blows my mind that I completed the course and didn’t die
  • Went to Sunderland for a lads weekend of football. And survived
  • Enjoyed Blue Planet Live in Glasgow with friends and had the latest night I’ve had in years which was swiftly followed 4 hours later by the earliest morning I’ve had in years for….
  • A flight. I went to Berlin for a week and am still undecided if I liked it or not. Food great. History great (if you like that sort of thing. Unfortunately, I am allergic to WWII and spent most of the trip queasy and sat down trying not to get too sad). Art galleries SUPER GREAT. Going during International Break and Germany playing The Netherlands in Amsterdam and Holland losing 3-2….really not great. Returning my Virgil Van Dyck shirt as we speak
  • I finally came up with the premise of my novel. Now to find the motivation to write it
  • General mood is alternating wildly being one of generally antipathy to life and ‘meh-ness’, a restlessness making me question if this is all my life will ever be, to one so manic I need an elephant strength tranquiliser dart to bring me back down. Unfortunately, the mania seems to come out at work which is probably the place I need to be at my most ‘meh’, much to the irritation of my new colleagues who don’t quite know what to do with me yet
  • I got weighed at the doctors and am now officially overweight. Celebrated this achievement by ordering the world’s largest Chinese takeaway
  • I completed my 2019 reading challenge of 15 books by the first week of April. I really need to find some friends that are people, and not books
  • I’ve been shadowbanned on Instagram which is the absolute epitome of a first world problem but until this is rectified (which it bloody well better be) there is little point in publishing big new blog posts as I can’t publicise them. Which makes me wonder if I should keep the blog going. As my arthritis and general problems get better, I have less to moan write about. Do I keep it going? Do I start posting everything which I’ve been meaning to do and never have? What to do what to do?

So that’s all folks.

It’s Friday. I have a full fun packed weekend of studying ahead of me (don’t be jealous) and if I’m feeling fancy may change from one set of pjs to another.

Hope you all have a lovely pain free weekend and let me know your thoughts on if I should continue with this or not.

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!

Happy Anniversary to me!

2 days ago was my one year cosentyx anniversary.

I have successfully administered 15 cosentyx injections.

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

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

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

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

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

The scarring on my legs eventually faded.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s not been easy.

But it’s been ok.

 

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.

A day off sick is not a day off.

Why having a day off work sick is not the same as having an extra day off

If you couldn’t tell by the title of this latest post, I am off work sick.

Since I came off methotrexate two and a half weeks ago I have gone in to the worst flare I have ever experienced. All of the toes on my left foot have swollen so much they resemble a pan full of frying exploding sausages. My right ankle has ballooned. There is very little movement in it. My left shoulder and my neck are excruciating. All of my muscles ache. Getting in to bed is a struggle. Getting out of bed even worse. When I walk I resemble a strange hunched over version of John Wayne. Every step I take hurts my toes. Sends shooting pains up my legs. I can’t lift my feet off the floor. Going for a wee is fraught with difficulties, if I do manage to shuffle to the bathroom, my muscles are so weak I can’t get off the toilet again. In a nutshell, I am in agony. Pure pure agony. What scares me is that this could be my ‘normal’ body. This could be the pain that I feel every day for the rest of my life. This could be me. Until a medication kicks in, this could be it.

I started sulfasalazine last week and I’ve been told that until it kicks in, I’m just to take pain killers regularly to mask the pain. Which doesn’t help the swelling. Or the stiffness. Or the frustration that it causes me. Oh and it’s also caused me to break out head to toe in a severe rash. The joys.

Last week I worked a sporadic mix of half days in the office followed by a few hours logged on at home followed by a few hours lying down in bed trying not to cry from pain. As much as being laid up is good for me, so is moving. So trying to continue with life and work as normal as I can is ideal. But there comes a point when fighting against a flare becomes futile. Trying to live normally is doing me more harm than good.

So Friday after work, I got straight in to my comfiest pyjamas and I didn’t leave the house again until Tuesday morning. 3 hot Epsom salt baths a day. A heat patch on my shoulder. Trying to keep off my feet for as long as I can. It was a weekend where I didn’t feel bad about being a slob. Quite the opposite, I was really enjoying taking it easy.

When I arrived at work on Tuesday it was quite clear I shouldn’t have gone in. The pain in my feet and ankle is so sore that driving becomes difficult to the point where I think I shouldn’t be driving. I couldn’t take the stairs at work. I get to my desk and the thought of being sat there for hours filled me with dread. So the first thing I did was to say to my boss and the head of HR that I was going to be self-certifying myself off sick for the remainder of the week. Not working from home. Not giving myself the pressure of having to sit up and log on to my computer. But to just be at home resting and recuperating. With the full support of my colleagues, I returned home.

I don’t like being off sick. I worry what people think of me. “Oh Rebecca’s off again.” “But she was fine just a few weeks ago”. “She has had so much time off”.

But I’m not enjoying a nice extra day off. I’m not sat at home watching bad re-runs of Jeremy Kyle, before popping in to town for some shopping and a spot of lunch. I’m currently sat in my pyjamas, propped up on some pillows in bed, planning to run my first hot bath of the day in a few minutes time before I go to my doctors for an appointment to hopefully get a stronger painkiller. I am tired, I am sore, and I am fed up.

When I get in to bed, I have to try and carefully place my body down on it. I can’t climb in. I can’t lie on my left side because my shoulder and neck are in agony. If I do try and lie on my left side then it sends numbness down my arm. I can’t easily roll on to my right side because of the pain in my back and the muscular pains. I can’t sit up to adjust my pillow. I can’t reach across to get my water. Every movement causes me pain. I wince. I make strange noises. I want to cry. Sometimes I do cry. When I wake in the night I have to try and take more painkillers. When I do manage to fall asleep it’s only for a short while before I wake again.

When I do wake up I can’t move. It can take me 20 minutes just to lift myself off of the bed enough to sit up. I take more painkillers and try to find the strength to get up. I am exhausted before I have even started my day.

My day off work is spent either snuggled in bed reading, or snuggled on the sofa watching tv. All the while in pain. There is no housework done, no leaving the house, no seeing friends or having a good time. There is pain, wallowing in self pity and feeling sorry for myself.

I medicate as best I can, but they only work to such a point. I try to take as few painkillers as I can because I want to try and learn to cope with the new issues that my body is presenting me with. But it’s hard.

I can try and live my life and fight this flare with what little strength I have left. I could try and work full time. And go out. And do chores. But the pay back could be too severe.

So I’m not longer going to fight this flare. I’m going to put my body first, even if it means doing nothing. Absolutely nothing.

There’s nothing to be guilty about. No shame in not going to work. In the long run I am doing myself a favour by taking a step back.

I am lucky enough that my team, both at home and at work, support me in everything I do. No expectations to do anything whilst I’m in this state but to take the necessary measures to recover.

So whilst I’m not at work, I’m not having a day off. I’m working hard at getting better.