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 4th 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.

Why I’m Running the London Marathon

I have always wanted to run a marathon. But not just any old marathon (though I wouldn’t mind being fit and quick enough to qualify for Chicago, but I love Chicago pizzas too much for that to ever happen) but London. My favourite city in the whole world. The city so close to where I grew up. The city that holds so many happy memories for me.

It helps that I love running. I’m not fast, but I can run and run and run and run and never get tired out. Running was something that I lived for. Coming in after work, changing in to my running gear and getting a quick and easy 5k out of the way before dinner. It helped me to get rid of any stresses I had, and just gave me time to relax. Getting fit was a nice bonus!

I started by only running 1 minute, and worked my way up to running 10 miles without stopping.

I always wanted to run a marathon before I turned 30. Time is now ticking.

When I first applied to run the marathon I wanted to get in on a ballot place, but was unsuccessful. This is a mighty shame, as this was pre my diagnosis and I could have easily completed the 26.2 miles.

But then of course, disaster struck. Arthritis came to me and I had to stop running overnight. I was so devastated I don’t know how I managed to drive past runners without opening my car window and throwing something at them. I’ve managed the odd run, and really hope that I get back to it.

So what better way to get back to it, than to actually do it.

Easier said than done, we know. My body isn’t playing ball. Methotrexate hasn’t had the dream results I was hoping for, and I’m always bloody tired. But I still believe I can do it.

I’m going to start ‘small’, running the inaugural Great Aberdeen Run 10k in August. No longer aiming for a sub 55 minutes, I’ll just be grateful to get round in one piece.  A few weeks after this I have a place for The Great North Run, which I hope to do a little quicker than last years disaster (but again, will be pleased to get round and survive.)

Which leads to The Ultimate. London.

Why do I want to run it? A few reasons.

  1. Because it’s a dream
  2. Because I want to prove to others I can do it
  3. Because I want to prove to myself I can do it
  4. Because I don’t want my arthritis to beat me

But also

5. Because I want to raise much needed money for Arthritis Research UK

And that’s my main motivation. I want to give back to this charity that have helped me immensely. When I was first diagnosed, their website and the leaflets available at the hospital were a lifeline for me. Even now I still access the website to provide me with my information on everything from fatigue to exercise. When I see my rheumatologist next week, I know that when I am offered new medication the first thing I will do is access ARUK website for the reliable information on it.

6. I want to run it for all of those who can’t. I want to run it for other runners who have had to give up running or up on their dreams because of the devastating effects of arthritis.

I won’t be fast. It won’t be pain free. But every single step will be worth it.

If you feel obliged then please take the time to visit my fundraising page and help me to support a charity that mean so much to me:

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=RebeccaNorth2

 

 

I’m not sorry for not saying sorry.

Before I go any further I should state that I will still be apologising for when I have done something wrong, like for all the cups of tea I have knocked over and blamed on the cat (sorry Fluffy) or when I have a poor attitude and moan to my boyfriend about being too good to do the dishes. Sorry for my terrible attitude towards domesticity Jack. I may even apologise for saying that I’ll be somewhere at 10am and rocking up at 3pm. It takes a lot time to look as bad as this and I am sorry for my poor timekeeping, I really am.

But I’m no longer sorry for anything to do with my arthritis.

I’m not sorry for being in pain.

I’m not sorry for being a bit slow and limpy.

I’m not sorry for feeling unwell because of medication.

I’m not sorry for taking time off of work to attend medical appointments.

I’m not sorry for staying home instead of going out.

And I’m not sorry for being tired.

Well. That’s not true. I am sorry for being tired. Always apologising for it. Sorry for yawning at work. I’m sorry for saying I’m tired in front of the man with the young baby who looks at me like I Have no reason to be tired. Sorry for being a bit later to work than I anticipated. Sorry I can’t stay up and watch the movie. Sorry I don’t want to drive today.

I’m tired.

I feel like I have to justify my tiredness every day.

Sure, I got enough sleep last night. Lots of sleep in fact. But it’s never a restful sleep. I never wake up feeling refreshed. I go to sleep tired and in pain and I wake up tired and in pain. So the cycle continues.

Over the last one year I’ve been getting a lot better at not apologising for being in pain. I try to medicate accordingly to keep the aches and pains at bay but sometimes it’s just not enough. It’s not my fault that I hurt, so I’m not sorry. But being tired? I’m really sorry. I’m sorry I’m sorry I’m sorry.

I apologise almost every day for being tired. I can’t seem to accept the fact that not only am I allowed to be tired, I am expected to be tired. Fatigue is one of the main side effects of both inflammatory arthritis and methotrexate.

Over the last 6 working days, I have phoned in sick to work on 3 of them. Why? Because I am too tired to come in. Not in a ‘I went to bed a bit late last night and I’m now a bit sleepy’ kinda way, but in a ‘I can’t even lift my head off of the pillow let alone be trusted to drive my car to work because I might fall asleep at the wheel’ kinda way. It is an all-consuming fatigue. Brushing my teeth feels like the hardest most tiring job in the world, so on days like these, I don’t even bother. I’d rather spend the day fuzzy mouthed than have to take a nap from the exhaustion brushing my teeth can cause me.  Plus if you drink enough cups of tea you won’t even notice after a while.

The day at home isn’t spent with my feet up watching Phil and Holly on This Morning. It’s spent asleep in bed, curtains drawn all day, texting my Mum to ask her to come and look after me because I may be nearly 29 but I can’t cope with life (Mum, when you read this, thanks for everything. Now, go put the kettle on and make me a cup of tea woman!)

Fatigue has become such an all-encompassing part of my life, yet I still find myself apologising for it. I can’t accept it so I don’t expect other people to. But they do.

Not only have my family accepted my fatigue as a part of who I (temporarily) am, but so have people who I don’t know particularly well.

My work colleagues over this last week have been INCREDIBLE. Sure they like a laugh at my expense (who doesn’t. My life has become a sitcom) but they have rallied together and offered me support that has been so overwhelming it has bought me to tears. Not even just little drops hovering on my eyelashes that threaten to fall but can be dabbed away before anybody notices, but actual tears. Wails. Sobs. A big, loud, nose dripping kind of cry. I don’t need to justify to them my decision to take the day off. To take a half day. To try and work from home only to fall asleep 30 minutes after logging on. They get it. They know. I don’t need to apologise to them and more than that, they get quite angry when I apologise. I’m tired and they know it. They don’t judge me. They constantly tell me to put myself and my health first. Frogmarching me to my car, telling me to listen to my body and go home and rest.

Why, if these men at work can accept that I suffer from fatigue can I not? Why do I feel like I’m letting myself down? If I could see my fatigue would I accept it then? I wonder what it would look like? Probably a big angry bear that punches me in the face with his big bear paws when he wants me to feel fatigued. But I’d accept the angry bear because I could see him. I can accept the pain when I walk because my feet are mangled and my ankles swollen. But foundation covers a whole multitude of sins, tired eyes included.

I may never fully come to terms with how fatigued I am. My luck means that the day I fully embrace it in a big friendly bear hug, my medication will change and fatigue will be a thing of the past.

But from now on, I’m not going to apologise for my big angry fatigue bear, and neither should you.

 

It’s ok to not be ok

Hey everyone, hope you’re all getting on ok. I’m about to have my third piece published on The Mighty! I don’t think it will be on the website for a few more days, but here it is below for you. I’m sure that a lot of you can relate, would love to hear your thoughts on it.

 

It’s ok to not be ok.

How are you today?

Ok? Alright? Fine?

But what if you’re not ok today? Would you feel as comfortable replying to that question with “actually, I’m pretty down today, I had a terrible night’s sleep filled with pain and I’m on the verge of tears?” Probably not.

I’m guilty of simply replying ‘alright’ every time I’m asked how I am. On a day with good mobility, minimal pain and with a high level of energy? I’m alright thanks! On a day where I can’t walk very well because of my psoriatic arthritis and my ankle has become so swollen so quickly I’ve had to cut the bottom off my trouser leg so that it fits? I’m alright thanks!

Those of us with chronic illness often think that we must be strong all the time, that we need to show the world a brave face, to make people believe that everything is ok with us. It’s easier that way. It saves us from having to answer questions about what is wrong with us. It saves us from having to explain for the 100th time what we’ve been diagnosed with. It saves us the blank stares from people who don’t quite understand what’s wrong with us and who think fatigue is the same as being tired from a lack of sleep. Saying that we’re ok is the easy option. But it’s exhausting having to keep up the act. We’re all exhausted enough as it is without having to pretend that everything is ok.

Here’s the thing. It is ok to not be ok all the time.

I shouldn’t feel guilty for hurting and for being in pain. I shouldn’t feel guilty for feeling a little bit low sometimes. I shouldn’t expect to be ok all time. And neither should you.

There is no shame in admitting that things are hard. There is no shame in asking for help. There is no shame in not managing to go somewhere or managing to do something. It’s even ok to sometimes feel that life is falling apart. A chronic illness is life changing. It took me a very long time to come to terms with this, and truthfully, it’s still a battle. For every one good day I might have where I feel super happy and confident about my life and my future, I have two other days where life feels a struggle and I am fearful for where my life and my body might be heading. But it’s ok to feel like that.

I have also developed what I like to called chronic illness anxiety. It’s a condition that I have totally made up but one that I’m sure lots of us can relate to. It’s the anxiety caused when thinking about how your chronic illness will impact upon a certain activity or social situation. Before my diagnosis I wasn’t a particularly anxious person. Sure, I had the odd worry like everyone else, but I enjoyed a generally anxiety free life. Now? I suffer from chronic illness anxiety, caused by my crippling arthritis most days, especially on bad days or during a flare. It’s often the first thing I think of in the morning and the last thing I think of at night. From trying to work out how many hours I can manage at work based on how good a sleep I managed the night before, to trying to establish if I should go out with friends on medication day or if I’m better off staying at home to rest up and sleep it off. Everything seems to worry me. But it’s also ok to feel overwhelmed by it all. I have two diaries. One for general day to day activities and one purely to keep on top of my medical appointments. I don’t know if I’m coming or going most days. Blood tests. Consultant appointments. Physiotherapy. Podiatry. Doctors appointment. More blood tests. Not to mention trying to keep on top of taking all my numerous medications at the correct dosages. But it’s ok if it takes a while to get your head around everything that is going on. It’s ok if things seem overwhelming. It’s ok to have the odd worry here and there.

On my down days, I often wonder why I occasionally feel as low as I do. I feel guilty for not feeling ok and for feeling a little bit sorry for myself. I forget that I am ok to feel like this sometimes. My body has drastically changed and with it, my entire life. I like to think of these low moments as ‘situational sadness’. I feel this way because of what is happening to my body and what it is putting my mind through. I feel this way because one year since I developed arthritis, I’m still trying to come to terms with my new body and my new life. I am sad and a little bit low sometimes because of the situation that I find myself in right now. I don’t know for how long I’ll feel like this, but what I do know, is I’m ok to feel this way. It won’t last forever. I will be ok.

So, the next time I’m asked how I am, I’m still going to reply ‘I’m alright’, because I am. I’m alright.

 

Open Letter to my Boyfriend

Hi all, so today I’m going to posting the first piece of writing that I had published on The Mighty, and the first time that I went public on my facebook with how I’ve been doing and what a terrible struggle the last year has been. Sure some of you can relate….

An open letter to my boyfriend on how he can help me face my ongoing battle with psoriatic arthritis….

When we met, I was the life and soul of the party. A young woman in her dream career. I loved you from the moment I met you. Over the next 4 years we had some amazing times. We travelled, we had adventures, we grew together. You supported me and my addiction to running and you drove me across the country to take part in races. We had our whole lives ahead of us. Until that one morning when I woke up and I had a pain in my toe so severe I couldn’t walk. Over the next few weeks the pain got worse. All of my joints below my hips rapidly began to swell. I was signed off work. I couldn’t stop crying.

Psoriatic arthritis they said.

I want to thank you for all that you have done, and continue to do for me, but also to tell you the areas that I need a little more help and understanding.

You have remained loyally by my side, throughout the bad moments, the terrible moments, and the occasional not so bad moments. You are patient with me. But sometimes I need you to be a little bit more patient. I can’t walk as fast as I used to, and I feel a little left behind when you forget this and walk ahead, innocently forgetting that I can no longer keep up. You understand that sometimes I don’t have the strength to get out of bed. So you cover the bed in blankets and cuddly toys, and we stay in bed watching movies. But I need you to understand that sometimes I don’t even have the emotional strength to tell you how I’m feeling. That even talking feels too much. As much as I love you, and value your support more than you can imagine, I need you to stop asking me what you can do to help when I’m in my lowest moments. Not because you can’t help, but because sometimes the best help you can offer me is just to let me cry it out. I don’t always have the words to explain how I feel. Thank you for still making sure that I enjoy life. But please understand that the chronic fatigue I feel afterwards can leave me out of action for the next few days, even weeks.

Most importantly, I need you to keep talking about my condition and our joint relationship with it, because I believe it gives hope to others who may find themselves in a similar situation. That love can survive arthritis. That love can thrive with arthritis. That our relationship has become unbreakable because of arthritis. To tell other people that there are men and women out there who see past the creaking joints and the painful nights. Who will love and support you regardless. Who will even love you enough to help you clip your psoriatic toenails!!

My arthritis has become your burden to bear as much as mine. Let’s continue to walk on our journey together (slowly!) and see where it takes us….