My open letter: I know I don't "look" unwell!

One bad day back in the summer a friend called round and found me sitting in the garden with my feet up trying to get some relief from the pain and she just stood there and told me how well I looked and she couldn't see what the problem was. I was quite upset. I've found it hard enough having the doctors and nurses questioning me all the time ..... but my best friend too?

This experience led me a while later in early September to write an open letter for my friends and family, inspired by reading something a lupus sufferer had written, to tell them my story and explain what PsA is like for me. It was a cathartic experience and it has helped me come to terms with some of my own feelings.

When I wrote this I was in the middle of my Humira trial. The update - it didn't work for me so I'm now in the process of closing down my business because I can't manage to do all the physical work involved any more.

I try to maintain a sense of humour no matter how ridiculous some of the situations that PsA leads me into. I hope you laugh with me.

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I have Psoriatric Arthritis (PsA) which is a progressive autoimmune disease that is worse some times than others. It causes painful inflammation which can affect any of the joints in my body at any time.

It started over two years ago with a pain in my left foot that felt like tendonitis but as the weeks passed the discomfort focused at the base of my second toe which screamed with pain on every step and even hurt at night under the weight of just a cotton sheet.

Initially an orthopaedic surgeon thought it was a slightly overlong metatarsal bone causing wear and inflammation in the joint of the second toe. Remedy: a steroid injection in the joint and three days with my feet up! Looking forward to finally getting this sorted I planned seven days holiday for treatment a few weeks hence.

In the meantime, I had two episodes of excruciating pain. The first in my hips, I woke in the middle of the night in unbelievable pain, unable to turn myself over or get out of bed. The second in my lower back, sitting, standing, lying, walking or indeed getting between any two of these positions, it all hurt. Still with lower back pain I was grateful to arrive at the hospital, with crutches, ready for the steroid injection. At least my foot would now be fixed.

Watching the consultant radiologist as he ultra-sound scanned my foot for the injection procedure I could see from his facial expression that something was amiss. Four of the five toes showed considerable inflammation. He began to ask me about other aches or pains and whether any blood tests had been done and was I stiff when I got out of bed in the mornings? Stiff? I suddenly realised that for a long time I’d been like a little old lady until I got going.

This led to a referral to rheumatology. Initial x-rays and blood tests were inconclusive. A long question and answer session with the consultant rheumatologist eventually led to the subject of skin conditions. “No” I said when asked whether anyone in my family had psoriasis “but I’ve had lifelong skin problems with allergies, eczema and dermatitis”. The consultant asked if I had any at the moment. For some time I’d had two scaly patches on both knees which I’d attributed to being up and down off my knees dozens of times a day, they didn’t bother me and other than looking unsightly (but who ever saw my knees anyway!) I never gave them a moments thought.

Immediately the consultant saw my knees, ignoring my unshaved legs, he said “I know exactly what’s the matter with you! This isn’t eczema it’s plaque psoriasis and you’ve got psoriatic arthritis”. Reassured that whilst the condition wasn’t curable it could be successfully managed with medication, I left armed with plenty of reference material from Arthritis Research UK, details of reputable websites where I could read up on my condition and a very large intra-muscular steroid injection in my bum!

And that was eighteen months ago. Since then I have cycled through various joint flare ups and been escalated through one medical treatment after the other, none of which have achieved ‘management’ of my PsA and some of which, like methotrexate, a low dose chemotherapy drug, have made me very sick. The disease has continued to progress and wreak havoc on my joints and my life. I am currently on a trial with the holy grail of PsA treatments. It’s not working …… yet.

PsA is, I’ve discovered, a whole lot more than inflammation and pain in my joints. It is a thief. It steals my energy, it steals my strength, it steals my speed, mobility, freedom and a whole lot of the everyday things I used to take for granted that I could do. And, I suppose, it robs me of some of my future dreams and plans too as I have to come to terms with not being as physically able as I once was. I probably won’t get to hike in the Andes but maybe walking the Malvern Ridge should still stay on my bucket list, at least for the time being.

Instead of being a human dynamo who could work non-stop all day, I now wake each morning knowing that I can’t do everything anymore, that I have a finite amount of energy. How much this energy is varies from day to day, it partly depends on how well I have slept or if the painsomnia has kept me awake half the night, how active the inflammation is in my joints or whether I overdid it the day before and it’s now payback time. Sometimes I can top up my energy a little with a nap during the day but other times I want to go back to bed as soon as I’ve got up and had breakfast!

I have to think about everything I do. Whether I can physically manage it and then how much it is going to cost me in energy terms and whether I can afford it today. I can no longer ‘just do x y and z’. So far I’ve been able to keep my business going, just. But it is at the expense of everything else in my life. I want to fight back but some days I just don’t have the energy left.

At the moment my feet, knees and hips aren’t too bad. As long as I don’t overdo it I seem to be able to walk and stand ok, except stairs, they are a bit of a problem. If it wasn’t for a wonderful podiatrist telling me about FitFlop shoes walking would be a different story. My shoulders, elbows, wrists and fingers are currently worst affected making some simple everyday things that you take for granted a struggle - washing and drying my hair, shaving my armpits, getting dressed and undressed, cleaning my teeth, putting on a necklace, making or changing the bed, housework, ironing, hanging out the washing, driving a car, getting in and out of a car, lifting and carrying, typing at the computer, writing, holding a book, opening a screw-top bottle, peeling milk bottle tops, lifting the kettle or a saucepan, mashing potatoes, cutting up my food and doing my job. If it involves having to move my arm from the shoulder, it’s a problem.

I can’t kneel any more. I’ve kissed goodbye to being able to do everything in the garden. If I do need to get down to the floor I struggle to get up and can’t push or pull myself up with my arms either. I can’t wear my wedding and engagement rings because my fingers are swelling faster than I have the rings made bigger. I used to enjoy Pilates, bicycle rides, needlework and decorating the house ….. all now in the past.

The bad flare ups are the pits. When my shoulders ‘went’ the pain was the worst I have ever experienced in my life. I couldn’t think straight let alone do anything else. Every flare seems to involve some drama around the toilet, getting stuck and not being able to stand or not being able to wipe when I’ve finished. Not even being able to adequately attend to personal hygiene is, I promise you, the bottom line. Literally! And then there have been falls. Face planting into the carpet on Christmas Day ….. and, no, I hadn’t been at the cooking sherry.

When I’m in pain, angry, frustrated or exhausted I sometimes forget my manners. I forget to say “thank you” to my husband for everything he does for me. And sometimes, yes, that anger, frustration or exhaustion is directed at him in some unkind or thoughtless word. I’m sorry. I hope I am forgiven.

And then there is the affect on my immune system, largely down to the cocktail of immune suppressing medication. It’s flu and pneumonia vaccinations and dire warnings about everything from what I eat - to a cold - to a cut - to the animals and all their bodily excretions that I deal with every day. Not to mention all the possible side effects of the drugs themselves. Thankfully I’ve always been a pretty healthy and robust person and so far I’ve survived unscathed. Long may this continue ….. but please, if you’ve got a cold, stay away.

I don’t look unwell. There really is nothing much for you to see on my outside, a few swollen finger joints or on a truly bad day there may be pain etched on my face. I avoid the things I can’t do and have adapted ways of doing things that are difficult so you probably won’t see me struggling. I hate letting anyone down but I have to be my own best advocate. If I say I can’t do something or go somewhere it’s because I’m feeling too unwell inside. I don’t want sympathy, just understanding.

For an independent perfectionist control freak having to ask for or accept help is beyond difficult. I struggle with having to accept that something I or someone else has done for me, especially in my business, is not perfect but good enough. Perhaps this is one of the lessons that I’m here in this incarnation to learn. Have I ignored the subtle teachings of the universe so far in my life so it is now giving me the ‘Mac truck’ experience?

I’m fifty years old so have a lot of living yet to do. Engaging in ‘why me’ thoughts are a waste of valuable energy. Sometimes sh*t happens, it’s how I deal with it that matters. Yes, some days it is incredibly hard to stay positive and my thoughts do wander towards the question of what triggered my body to start attacking itself. But much greater minds in arthritis research work on this question every day and have yet to find the answer. I hope that one day they will make this breakthrough and that it leads to a cure. In the meantime I will take the best drugs that are currently available and hope for remission, however long or short-lived it may be.

Difficult decisions lie ahead if I don’t have a positive response to the current drug regime. I try not to dwell upon this but my nature requires me to consider the worst possible outcome and have a plan for dealing with it.

But I’m not done yet. Dr Seuss said “I have heard there are troubles of more than one kind. Some come from ahead and some from behind. But I’ve bought a big bat. I’m all ready you see. Now my troubles are going to have troubles with me!”

Different time. Different place. Different “props”. But it’s my story too. Thanks.

Thanks Jules. That expressed this all very well.

What a wonderful letter. Love this post.

This is amazing. I imagine it was incredibly cathartic to write, and to hand to your friends and family. May I borrow this concept and adapt it for my own story?

Very moving Jules, I’ll swing along beside you…we all need a nice big bat sometimes x

tmbrwolf ..... and everyone else, please use any/all of it or just the concept. It really helped me at the time and still does today when I read it.

Thank's Jules this is very touching . I totally understand what this life is like. I can totally relate you said it all.

Yesterday I went for a regular check up at the PsA clinic. Going there is a bit strange. I don’t know about you, but in a doctor’s waiting room I’ll often think “Hmmmm…wonder why they’re here…”, but not at this clinic! If they are in the waiting room, they have PsA just like I do! And you know what? Just like Jules and me and most of the other people on this board, they don’t look unwell!
Reminder: be kind. Everyone else you meet is fighting a battle that you know nothing about.

Thank you, I often feel like writing an open letter. I have a friend who constantly tells me all I need is to walk!! "Go walking, it will help so much!" She doesn't get it, walking is one of the most painful things I can do and one of the most missed things I did daily in my life before this rotten disease. I am constantly explaining myself, I'm tired of it.

superb letter, Jules.

I can totally relate to this. Thank you for posting.