Psoriasis Update

I meant to post this about 5 weeks ago but I clearly didn’t. I don’t really have any kind of excuse why. Apart from I was probably napping and life got in the way I suppose.

I’ve been super poorly with 5 bouts of sinusitis in 5 weeks, which let me tell you is bloody miserable. I would be fine and dandy and then literally out of nowhere, I felt full of ‘cold’ symptoms, but without actually feeling like I had a cold. A few sporadic days off work. And then, as quickly as the symptoms came on, they’d disappear again. Only to return just a few days later. Repeat for 5 weeks in a row. One day life is going to give me a break.

I also went to Iceland for 4 days which was good because holidays are my favourite thing in the whole wide world. Saw some waterfalls. Saw some volcanoes. Suffered from sniffly sinusitis. Saw some more waterfalls. Also saw the Northern Lights though which was pretty super. Another thing to tick off my 30 things before 30 bucket list.

 

Although if anybody reading this has been to Iceland when in an arthritis flare can you please let me know your experiences because my impression of it from a disabled point of view, Reykjavik especially, was not positive and this was reinforced when I was speaking to a woman in a wheelchair who seemingly had had a terrible time of it. So I would be genuinely curious to know what others thought of it.

I also started running again and training for the dreaded marathon. 33 days to go FYI. Link to why I’m running is below:

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?pageId=823987

Anyway, I digress.

I started writing this post when I was scrolling through instagram, and noticed quite a few of the accounts I follow had posted that a lot of photos tagged #getyourskinout had been removed due to them violating the community guidelines.

There is nothing about these photos that breaks the rules. They are often very personal photos, posted with immense courage by people who might otherwise be too embarrassed to share with the world just what their psoriasis looks like.

For the record, I have never once been embarrassed of my psoriasis. Sure, I hated it with a passion (mainly my scalp) but I never hid it away. I went on hot holidays and got my skin out in swimwear. Bare legs. Bare arms. I often wore sleeveless shirts to work without a care in the world. I was often praised for this, which whilst I appreciated (receiving compliments is second only to my love of holidays) I also felt baffled by because there should be nothing to compliment. It’s just arms.

So back on whatever day I first drafted this post, I decided to reshare a photo of my legs, covered in guttate (caused by sulfasalazine, but that’s a whole ‘nuther blog post), alongside a photo of my legs as they are now. My legs (and scalp, and arms, and tummy, and boobs and bum and face and well, ALL OF ME)  have been completely changed by cosentyx. No psoriasis. A wee bit of scarring but who cares. I certainly don’t.

I wish I had taken more photos of my psoriasis in the days and weeks after I started cosentyx, but it really did happen so rapidly it was too overwhelming. I think I have been completely clear for 5 months now. I still sometimes gaze down at my arms to check how bad they are only to be met by clear, soft, skin. I still occasionally scratch my scalp, expecting to feel something, almost wanting to feel, scratch and remove the plaques, and I’m still baffled that there is nothing there. Having my first haircut psoriasis free made me cry. That was how much of a big deal it was. I sat in the hairdressing chair and I was so overwhelmed by what was happening all there was to do was cry and hope that my muffled words of “just a trim please” was not swallowed up by tears. Thankfully I didn’t turn out bald so she must have got my drift.

Enough bumbling on from me. Spring has almost sprung. The days are getting brighter. I am looking forward to a great week ahead, finishing it off with a few days in Edinburgh where I am hopeful I will be able to do something that I love that I haven’t done in almost 2 years……dance.

To be continued.

Hospital Anxiety

I hate hospitals.

I hate going to them even more.

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

I hate everything about them.

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

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

Positives

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

Negatives

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

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

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

But adulting is very hard.

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

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

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

The appointment today?

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

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

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

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

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

But right now?

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

 

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 you know to be true if you have scalp psoriasis.

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

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

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

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

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

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

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

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

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

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

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

  1. You will appreciate a good vacuum cleaner

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

 

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

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

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

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

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

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

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

Why me? Why not me!?

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


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


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


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


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


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


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


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


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


Why me?


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


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


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


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


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

Send Help. And Cookies.

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

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

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

Only it wasn’t a rash.

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

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

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

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

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

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

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