Julie Lewington

In February 2015 I thought I had flu and as I’d only just started a new full-time job the previous December, I went to the doctors for a course of antibiotics as a precaution, as my colds and flu often turn into chest infections.

The doctor signed me off work for two weeks, after which time my symptoms had worsened. Following blood tests which revealed an under active thyroid and others which confirmed I didn’t have cancer again, I was referred to Rheumatology. I spent all my time from February until my hospitalisation in April, either in bed or laying on the sofa, apart from when my husband took me to medical appointments. Having been off work for over a month with an, unidentified illness, my employers took the decision to cancel my contract and I lost my job.

During this time I got progressively worse, I was in constant pain, even while taking anti-inflammatory pain killers. I was very weak. I had no energy, couldn’t lift my arms above my head, could barely walk, my feet and ankles were extremely swollen, I had to drag myself up the stairs, I couldn’t get up off the sofa, the toilet or a dinning chair without great effort, and was out of breath just talking, let alone moving around, and I had a terrible intermittent cough. In the week leading up to my appointment I had two falls, one while trying to get off the toilet and the second, I was standing up one minute, and was flat on my back the next. As my muscles were so badly compromised I couldn’t tense, so I wasn’t hurt, apart from my pride. I also got stuck in the bath twice, and my husband had to physically drag me out until I could sit on the edge. Also, on the day I was admitted, I was unable to get out of the car by myself, which was something I’d been able to do only two or three days earlier.

At my outpatient appointment on 16th April, I fully expected to be given some tablets and be sent home with a date to return. Instead, I was admitted as a matter of urgency. Several hours later was the first time I ever heard the word MYOSITIS. I got one of the doctors to write it down for me in my diary. What did you say I have?? To say I was in shock would be an understatement, but the song “you ain’t seen nothing yet” couldn’t have been more appropriate.

Within 24 hours I had been pushed (in a wheelchair) from one end of the hospital to the other and had been scanned, x-rayed, had an ultra sound and had a lung function test, not to mention several amounts of blood being taken.

My consultant even asked me if I wanted to be intubated should the need arise, and advised that she wouldn’t put me into a coma unless she was confident she could bring me out of it, luckily this never became necessary.

Had I been more myself, this question would have received a very strong reaction. She also advised that ICU had been informed and were on standby to receive me if necessary. And I had two visits from them. I was also moved to the acute cardiac ward and was given the first of three steroid infusions.

It was a couple of months later that I realised just how close to death I came.

I think it was around this time that I first heard the words POLYMYOSITIS and ANTI-SYNTHETASE SYNDROME. Scary words and impossible to pronounce. What did you say I have??

Within hours of the first steroid treatment, I was pain free and felt SO much better, although I was still very weak. Polymyositis was explained to me, including the fact that it is a rare autoimmune disease that attacks muscles and extremely rarely, as in my case, attacks the heart and lungs too. I made the observation that I was trying to commit suicide from the inside out!

I was given the available literature relating to my condition, which I’m sure you are aware, is not very much. I do understand that every patient is different and so producing accurate and relative information is virtually impossible.

I had a couple of highly emotional days, when all I could do was cry. This was not a pity thing, I think it was more out of frustration and ignorance about what was happening. That and the fact that all the staff were so nice to me, it just made me cry more. My consultant assured me it was completely normal and that frankly, she would have been more concerned if it hadn’t happened, explaining that the steroids can severely affect your emotions.

In order to confirm diagnosis, a muscle biopsy from my left thigh was requested. Can I just ask, based not only on my extremely painful experience, but of many other Myositis sufferers, that when future patients require biopsies, PLEASE where possible can they be offered a general anaesthetic or at least a pain block like those used in childbirth. When you’ve already suffered severe pain, it seems unfair to then be subjected to a local anaesthetic, which was for many of us ineffective and resulted in agony, albeit relatively short lived.

During my hospital stay, I continued to improve and was very well looked after. I was also scanned, x-rayed, examined, tested and gave blood on a daily basis. Whilst I appreciate this was all necessary, I often had no idea that I was going to be whisked off again, let alone where to, or what was being examined next! That being said, my consultant was very good and explained things to me and was always happy to answer any questions I had, assuming it was possible to do so.

Following all the tests, it was confirmed that my diagnosis was ASS, comprising of :
Polymyositis, Jo1positive antibody, Raynauds, Synovitis, Cushings, Cardiac and Lung involvement. Apparently though, this was not enough to win a goldfish!

I stayed in hospital for just under two weeks and on the day I was discharged I had my first round of chemo, Cyclophosphamide and received the following five doses fortnightly. I made the decision before my first infusion that I would not suffer from any of the usual side effects, and I didn’t, apart from issues with my memory, but that could also be due to the steroids.

I tried on several occasions to get a long-term prognosis from my Consultant and felt frustrated when I was repeatedly told it was too early to discuss this. I now know, that it is virtually impossible to make that call due to the unpredictable nature of this disease, or more accurately ‘set of diseases’ and the very individual reactions of each patient.

Following my discharge from hospital, I felt very isolated and was desperate to talk to someone else who knew and understood what was happening to me. One of the nurses mentioned the Myositis charity, which I joined but I found the forum basic and not very user friendly.

I felt confused and didn’t know where to find answers to my questions. To be honest, I wasn’t even sure what my questions were. I looked on the internet, but I’ll only read about medical issues from either the NHS website, which had nothing relating to ASS, or specific charity sites and as there isn’t an ASS charity, I was left floundering.

I asked my consultant if she would pass on my details to any other patients if they wanted to talk or meet up. She said she would enquire, but feared they may not be interested, and warned me that we were all at different stages of the disease, so it might not have such a positive outcome.

During my last chemo I was advised of a closed Facebook page for ASS patients, carers and family members. This page has been an absolute revelation for me. I am in touch with over 500 people worldwide dealing with ASS. The knowledge and information is vast, varied and invaluable. We are a family united by a cruel uncaring set of illnesses and conditions but we support each other through setbacks and disappointments and celebrate each other’s triumphs and achievements.

Medical intervention is of course the single most important thing needed to fight these problems, but take it from me, understanding and sympathy from someone who knows, is a very close second.

Slowly I’m learning exactly what having an autoimmune disease really means, not least that it’s degenerative and may well cut my life short. But as I always say, I might get hit by a bus tomorrow, so no point worrying about it.

I believe that a positive mental attitude is essential when living with a condition like this. I understand that not everyone is able to deal with it like that, in fact I know people who suffer with depression as a result of trying to deal with this illness. Personally, I feel very fortunate that I didn’t sustain any serious permanent damage to my heart and lungs and that I’ve recovered a lot of my pre-sickness abilities. I do suffer with fatigue sometimes, which can last for several days, if I overdo things.

All in all, although I have an, as yet incurable disease, I feel lucky that I wasn’t more severely compromised. I know people who have suffered severe damage and their long-term prognosis is not good.

Another thing is……………………… memory. Sometimes I start a conversation and find I have no idea why I’m talking. I also sometimes have trouble remembering names, places, events and details. Shopping has become such fun! I tried making a list but forgot to take it with me! The other thing is the hot flushes, which are not to be confused with the menopausal type. These are so much worse, believe me I know.

Every day is now a surprise, will I be able to get out of bed today? Will I have the energy to do a bit of housework? Is today the day that my symptoms return? Will they EVER return? I don’t know the answers to these questions and with the greatest of respect, neither do any of you in this room.
What did you say I have ???

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