10 Things I Know About Me

I use this blog as a way of talking to you all about life with inflammatory arthritis and life with chronic illness in general, but I was thinking after my latest blog entry about having an identity crisis, that I have never really introduced myself. I don’t want to do some kind of boring “I am 5’6” and have size 6 feet” or “I’m the eldest child in my family” kind of thing. That’s boring.

So. Here’s a slightly alternative 10 things about me entry.

1. Who am I? I am the girl who loves my island, the girl who loves the sea, it calls meeeeee. Oh wait, that’s Moana, not me. But that leads me nicely to point number 1, I LOVE everything about Disney. My favourite has to be The Jungle Book, and I have an unhealthy obsession with Baloo. I have heaps of Baloo toys and memorabilia, including, but not limited to pjs’ clothes and bedding. I went to Disneyworld Florida dressed as Baloo and when I met him, I pretty much cried. It is still the happiest moment of my life. I’m 29 years old by the way. This happened less than 2 years ago.
2. I am a Cancerian born under a Gemini Moon. This explains why I articulate with wild hands, why I love to write and most importantly, why I love to talk.
3. I am of part Chinese heritage and I am incredibly proud of this (FYI, I’m a dragon).
4. I am scared of balloons, Christmas crackers and party poppers. I.E anything that has a potential to go BANG.
5. I am an avid reader. In fact, I would say that reading is my favourite thing to do. I think I own more books than the average library.
6. I have moved house at least 16 times. It may be more, but it’s hard to keep up.
7. I can play both the piano and the violin, but sadly, not at the same time.
8. I love to drink tea. 90% of my body is made up of tea. I drink probably 12-15 cups a day. And that’s on top of the 3 litres of water I drink every day. What can I say? Hydration is key.
9. I cannot eat pineapple, oranges or prawns. The string-y texture makes me wanna cry.
10. I am Slytherin. There is nothing more to add to that.

 

So, there you have it. 10 slightly random facts about me, which, when I read them back make me question how mentally stable I actually am. If there’s anything else anyone wants to know then drop me a message, and as always, any future topics you want me to cover then send them my way and I’ll do my best!

What are some wonderful facts about you??

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.

2. 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.

3. 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!

4. 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.

5. 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.

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.

Rheumatology. Expectations vs Reality

Rheumatology Expectations vs Reality

2 days ago, I had my 4^th rheumatology appointment.

It was a disaster.

Before I elaborate, let me give you a brief background.

On my initial appointment seeing Dr Evil in August 2016, I explained that my swollen toe was the first symptom I ever had of Psoriatic Arthritis. I said that initially I wasn’t too concerned, because I possibly stubbed it or maybe I had hurt it when I was running. In short, it wasn’t an alarming injury. He leapt on this and kept accusing me of admitting that I caused the injury to myself whilst running, which was not the case. His accusatory tone really annoyed me and my Mum, who I took to the appointment for support, had to calm me down and stop me from really shouting at him. Eventually, he conceded that it wasn’t a running injury and was PsA after all (WELL DUH). He threw me a leaflet for methotrexate, sat me on a bench in the corridor, and that was it.

Appointment number 2, December 2016. This time I take Boyfriend with me as moral support, and to see what he thinks of Dr Evil. What would happen is Dr Evil going out of his way to tell me that I have nothing wrong with my feet. The pain I feel is probably because I ‘walk funny’ (he went through how many years of medical school for that diagnosis?!) Only for me to read the letter he sent to my doctors surgery sometime later saying “severe tissue damage and inflammation in feet”. Which doesn’t tie in to when he fobbed me off. I was told to stop taking anti-inflammatories my doctor had prescribed me as they were giving a false reading.

Appointment number 3. April 2017. This time, I opt to go it alone. He was rude and dismissive in front of both my Mum and Boyfriend, maybe he’ll be different if I’m by myself? He was. Just. In what was the worlds quickest appointment, he asked to take a look at my psoriasis and my feet. Admitted that the methotrexate wasn’t working and that if my psoriasis hadn’t cleared up by my next appointment and my toes were still swollen, my medication would be changed. I was, however, told off for the fact that I had stopped taking anti-inflammatories even though this was exactly what I was told to do at my last appointment *sigh*.

Which leads me to appointment number 4, 2 days ago.

I decided to be big and brave and go it alone. I wrote up bullet points about everything that I was feeling and going on in my body since I saw him last. I knew I was going in to this appointment with the knowledge that my Doctor was concerned about my arthritis and more critically, my crippling fatigue, and my Nurse was increasingly horrified by my high levels of bruising, my inability to fight even simple infections and my constant dermatitis. My psoriasis not only didn’t improve over time, it actually became worse. I felt sick for 3-4 days after my increased methotrexate dose and the fatigue was impacting me worse than before. The swelling in my toes and right ankle still wasn’t controlled with either the mtx or the anti-inflammatories. I had a long list of new symptoms ranging from numbness in my hands that spread the length of my arm, to stiffness in my neck and shoulder so severe it would be hard not to vomit. Add to that, my psoriasis was now present in my fingernails as well as my toenails. In a nutshell, I wasn’t good.

The Expectation

I would sit in the chair, calmly, precisely and succinctly tell Dr Evil of my symptoms and how I have been feeling. He would take each one on board, remember what he said the last time about changing my meds, take a quick look at my psoriasis, go over the new medication options, and bid me a kind farewell.

The Reality

I was ignored, dismissed, argued with and humiliated.

I had hoped that the fact a student was in the room with him on this occasion would work to my favour, how wrong I was.

He started by asking how I was. I replied that instead of feeling better on 25 mg I didn’t, and I actually felt worse.

I have severe fatigue I explained. I no longer make it to my office on a Monday morning because I am a zombie. It is destroying me. My Doctor is increasingly concerned with how little energy I have, we’re hoping to get me off the mtx so I can go back to normal.

“Fatigue is nothing to do with your arthritis or the mtx. That doesn’t concern me”

(If you go on to Arthritis Research UK website aka the holy Bible on arthritis, you’ll see that fatigue is one of the more challenging symptoms and side effects I’ll have to deal with. Dr Evil is also Dr Liar).

He asked me to tell him where I hurt. I HATE this question. Where do I hurt? Sometimes I hurt in my toes, sometimes my knee hurts, other days my neck hurts. Sometimes I don’t hurt at all. What does the pain feel like? I HATE THIS QUESTION EVEN MORE. I don’t know. Having never been on fire I don’t know if it burns, tingles or whatever. It just hurts.

Put on the spot, I replied my left foot, but with a new, very prominent pain in my big toe on my right foot. So, it was straight on to the bed for me to have the ultrasound on my toes. No inflammation. Chronic dactylitis. Osteoarthritis in the big toe. Methotrexate is clearly working. Off you go.

Clearly working. Clearly working. Clearly working.

This was what pushed me over the edge. Clearly working. Stay on mtx.

At this point, I started to cry, pleading with him to take me off of mtx. I’ll refuse to take it I screamed. My tears fell harder, he threw a tissue at me and told me I couldn’t change meds because I only have arthritis in 3 toes and nowhere else (hahahahahahahahahaha best joke I’ve ever heard). What about my side effects? The pain? The stiffness and the swelling I am feeling? It isn’t real. It’s in your mind he replied. Maybe you only feel pain because you are depressed.  Depression is causing you to feel pain. Not arthritis. The pain isn’t real. Depression explains your problems. It you weren’t depressed, you would feel none of these ‘pains’. You only feel tired because of it.

For the record. I’m not depressed. I’m just fed up of hurting and a body getting worse, not better.

I won’t take it, I won’t I continue to scream. He left the room and returned with a leaflet. Sulfasalazine. Stop mtx and take this. You’ll take it daily. Wait in the corridor for the nurse to take your blood.

And that was it. Exactly the same outcome as my first appointment almost a year ago.

I sat on the bench and my tears turned to wails and my wails turned to uncontrollable emotion just pouring out of me. People passed me in the corridor and didn’t even stop. A slew of nurses walked by and ignored me. Dr Evil himself walked past me without a care in the world to get his next patient. I opened up my phone to use the selfie camera to see how bad my make up ran. I see now that I accidentally took a photo of myself. My face is etched with pain. I’ve just been dismissed, again. Accused of making problems up. My credibility is in tatters. Again.

The nurse came for me, sat me down, and asked me what was wrong. My tears fell harder. I managed to splutter that Dr Evil Liar didn’t believe me, he thinks I’m a fantasist, he says there is nothing wrong with me. She calmly stroked my arm, and told me everything would be ok. Don’t apologise for crying she said, I am just sorry that I cannot help you. She could tell I wasn’t making it up. She took my blood and got me a glass of water. She sat with me, silently, whilst I drank the water, making sure I was ok. And as I came to go, some 30 minutes later, she softly took my arm again, came close to me and said “You will be ok my darling”.

Well, all my hard work to stop crying went out of the window. Enter from stage left more tears!

I managed to drive home, tell my boss I couldn’t come in to work, and reflect on what had happened.

Positives: I did at least manage to get off mtx.

Negatives: Everything else.

For a split second, I began to wonder maybe I am making it up. Then I pulled myself together and realised, I’m not. I’m many things in this world, but I am not a fantasist.

So where to go from here?

I’m going to see my GP and explain to him how this god awful appointment went. I need to research my symptoms and ask for his help (though I hate this, what if it’s MS? Fibro? What if I’m dying? I can’t be trusted to look up symptoms).

I’m going to get a calm head on me again. I’m getting there. I’m no longer planning to make a voodoo doll of him, but I am going to through the procedure to change rheumatologist.

I’m going to embrace sulfasalazine with open arms and hope for the best. But expect the worst.

I’m going to need a few more early nights to sleep off my Kim Kardashian crying face. I’m almost there.

I’m going to eat copious amounts of donuts and not care.

I’m going to enjoy my first weekend without methotrexate.

I’m going to worry about what my body will do to itself in the down time between meds.

I’m going to look back at this appointment and laugh. To make it in to a chapter of my book. To tell stories to other people about how bad my treatment has been but to laugh at it.

I’m no longer going to have expectations about what my appointments will be like, what will happen and what the outcome will be. But I will be quite sure I’ll never have an appointment as bad as this ever again.

But mainly……

I’m going to find Karla, that wonderful nurse who took time out of her busy day to look after me, and apologise for pretty much blowing my nose in her hair mid cry.