Perhaps it’s Polymyositis? – Patient K
My story is not unique, however, as many of you know by now, each ‘myositis’ case is just a little different than the one before, making our condition a challenging one for most of the medical profession.
I started falling down in 2009. Later, I found out that I was actually tripping over my left foot as it was dragging. Some other symptoms were with me for years earlier – only in hindsight does that make sense. I was starting to lose strength in my left hand too – progressively unable to carry much weight…my grip was becoming weaker. Swallowing was becoming more problematic and stairs posed the greatest personal embarrassment of them all. Suddenly I couldn’t even step on to public transport,
The baffling factors for many of the doctors and specialists I saw was my gender (female) and my age (around 40)… So the medical journey began.
I met fellow members of the Myositis Association Australia in 2011 – and the icebreaker was – ‘What’s your dose of pred?’ Immediately I knew I was talking to people who were also living with a condition that tends to permeate everything: your cognition, emotion and behaviour… so I felt understood…and welcomed. In amongst all the pathology requests, invasive testing and so many visits to hospitals, I was told it was likely I had Chronic Lymphocytic Leukemia (CLL for short). More in depth blood tests (32 in total), this time as an inpatient, proved this was incorrect though – but as many of you would understand, the after effects of this type of diagnosis lasted a while after that verdict was refuted. I had two biopsies, the first inconclusive, as was the second, but, given the responsiveness to some of the drugs I had been given, it was decided to call it ‘polymyositis’ – although some of the results initially indicated that it was perhaps Inclusion Body Myositis.
Time does seem to blur a little, but I clearly remember thinking, what type of role model do I want to be to my young daughter?. I also distinctly recall that I did not want to identify myself with the condition, not wishing to become a ‘sufferer’ of it. Whilst my friends know that I’ve struggled living with it, and having to ask for help, I have chosen to see it as something that is with me at this time… part of my life at this time. Importantly, what happened to me early in 2013, after trying the usual medical protocols of prednisolone and regular IVIG infusions, was a shift from strictly neurology to rheumatology. I started seeing a rheumatologist who, after looking at all my results over a 2 year period said, “I will have you walking again”. By this time, I was falling often, having broken toes and some lower vertebrae. My confidence had plummeted. I was scared. Leaving my house was a logistical odyssey. Crossing the narrowest of streets was a hazard, I felt so helpless. His words made me cry…there were no guarantees of course but I felt committed to the new treatment because I wanted to keep walking…I aimed to continue to walk with my daughter, even if short distances, holding hands. Initially it involved another stay in hospital, having liquid pred poured into my veins over 4 days rather intensively… this was not for the feint hearted… but it worked!
At the same time I was informed I also had Interstitial Lung Disease – a secondary condition affecting some of us – affecting the lungs in and around the lungs. Shortness of breath is the most obvious symptom, and some well targeted physio exercises does wonders. Now I also have a wonderful lung specialist. Most recently due to some of the medication, my blood pressure has risen too high for comfort – so I’m now on blood pressure medication…Between us girls though, the facial hair growth, the bloating and the skin blemishes are a very big nuisance! There are supplements one can take to make these symptoms more bearable though…just ask your doctor for ideas…you’re not alone. I’m now mid-40’s, still walking with my daughter (albeit short distances), a few kilos heavier for sure but in a new relationship with a supportive partner, yes, he knows the importance of monitoring CK levels and the names of most of my prescribed medication, studying a Masters and working full time in a new job – after being declared surplus to requirements in July.
The journey is not easy, and it is as individual as you are. Just know that you are not alone. The Myositis Association-Australia and the support it provides is invaluable for many of us. Thank you.
The Myositis Association-Australia Incorporated
My Journey With Polymyositis – Patient S
Hanging out my washing one afternoon ; answering the phone during work; typing and writing; getting up public transport steps and stairs; getting off seats and chairs; walking far distances; trying to take photos with my camera; trying to get dressed, bottoning and unbottoning my clothes; tying up my long hair and opening jars and cans; difficulty swallowing……these were just some of the first signs of weakness and tiredness along with breathing difficulties that I experienced first hand, with Polymyositis, back in early 2008.
Something was wrong…..really wrong…..especially when I was unable to use my arms and hands to feed myself and experiencing excruciating pain on my neck, shoulders and left arm all the time and not knowing why. Voltaren Gel and other antiinflammatories did not help. My weight was a mere 45kg, despite what I ate and my chest ,shoulder and back bones protruded.
The GP I was seeing put it down to stress at work and being on the computer for long periods of time. Blood tests, x-rays, scans and ultrasounds were done, but nothing sinister showed up, except that my Vitamin B12 was very low. I sought a second opinion and as soon as the next GP saw me, he said that he could see that I was not walking right and that something was terribly wrong. Special autoimmune related blood tests confirmed an autoimmune condition and I was promptly referred to a neurologist. After a week’s stay in hospital and undergoing extensive tests, and a muscle biopsy a couple of months later, it was confirmed that I have Polymyositis in December 2009. By which time, a lot of my muscle fibres and tissue were dead. I had to stop work as I was too weak and my neurologist didn’t want the risk of anymore flares and deterioration. I started treatment as well, with 50 mg of Prednisolone and immunosupressive drugs such as Imuran. I had six months of immunoglobulin infusions which gave me a ‘boost ‘overall. I was a hospital rehab inpatient for a month and a half as well. I had to virtually ‘learn’ to walk properly and upright again, as I was shuffling and somewhat bent. Intensive physio and hydrotherapy in there helped me heaps and I found it somewhat tiring but enjoyable. Hair loss, weight gain and sleeplessness, lack of concentration and focusing were but just some of the nasty side effects of all the medication I was on. There was so much to cope with, not just physically but emotionally as well…my workplace organisation was not very supportive with staff with disabilities; some so called ‘normal’ friends of mine didn’t want to know me anymore or were distant; image issues with the weight gain; being self-conscious using a walking aid….just to name a few.
I continued being an outpatient at RMH and joined a few support groups, including the Muscular Dystrophy Association (MDA) and Wesley Mission Do-Care. I was also a participant with LifeMoves (known as Peers Inspiring Peers) back in May 2010, recommended by my occupational therapist. LifeMoves is a peer support program for people impacted by ABI’s and other neurological conditions. It is an opportunity for group members to discuss challenges faced and strategies to overcome them. I enjoyed the 8-week program so much, that I decided to become a volunteer. I started off as a peer and am a facilitator now, running various groups with others. LifeMoves also merged with BrainLink last year. (website: brainlink.org.au) Being a volunteer there has been wonderful and has opened up a whole new realm for me, in terms of meeting other people with different forms of disabilities, making new friends etc. In hindsight, this was the best advice ever, that my neurologist had given me after diagnosis, to join support groups. Through MDA, I came to know about the Myositis Association Australia and it was simply fantastic to be part of this group!! The members made me feel so welcomed and it was here that I didn’t feel alone with the disease. I have also learned so much from the others and have been enjoying our social functions etc. Through this group too, my family have actively given me support in participating in the various social functions when they can, increasing their awareness of myositis.
Living with chronic illness and disability is not easy and challenging in all aspects. Not only is there the physical challenge to cope with, but also the emotional side of things; changes in relationships; finance structure changes; coping with visible and invisible symptoms; acceptance of the disease and changes in way of life, and uncertainty of the future.
Since diagnosis, I have come to the conclusion that I might as well make the most of what I have got left, to enjoy life to the fullest, be happy as much as I can be and help others as much as I can. I want to give back to the community what they have given me and are still giving me, to my best ability. I am so grateful for the fact that I can still walk a bit and be fairly independent, with the help of my family, friends, medical practitioners and other support groups.
The Myositis Association-Australia
I cannot change the direction of the wind…..
But I can adjust my sails to reach my destination……