Living With Myositis – Roly Clulow

I was diagnosed with Inclusion Body Myositis in 2000.

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Firstly, due to the disease being rather rare and therefore not in every doctor’s portfolio of well known diseases, let me try to explain as succinctly as possible.

Inclusion body myositis (IBM) is an inflammatory muscle disease, characterized by slowly progressive weakness and wasting of both distal and proximal muscles, most apparent in the muscles of the arms and legs. Weakness comes on slowly (over months or years) and progresses steadily and usually leads to severe weakness and wasting of arm and leg muscles. It is slightly more common in men than women.

Patients may become unable to perform daily living activities and most require assistive devices within 5 to 10 years of symptom onset. IBM is not considered a fatal disorder – barring complications, all things being equal, IBM will not kill you (but the risk of serious injury due to falls is increased). One common and potentially fatal complication is dysphagia (swallowing difficulty). There is no effective treatment for the disease.

There is no standard course of treatment to slow or stop the progression of the disease. IBM patients do not reliably respond to the anti-inflammatory, immunosuppressant, or immunomodulatory drugs that have been tried. Management is symptomatic. Prevention of falls is an important consideration. Specialized exercise therapy may supplement treatment to enhance quality of life.

I have been getting progressively weaker and have adapted my lifestyle to suit these changes. Never in my wildest dreams did I ever think that my strong healthy body would suddenly start deteriorating at such a rapid rate. Eleven years down the line and it has now come down to partial use of my right arm only. My left arm and legs are “just there for the show” to prove that I was once healthy.

Please don’t get me wrong I am not complaining or looking for sympathy, but merely making a statement as a preamble to my explanation of how I stay sane and out of the depths of depression. The deterioration has been steadily progressive from sudden unexplained falling, to using a walking stick (still falling), to walker (still falling), to manual wheelchair (no more falling), to power wheelchair and hoist to bed, toilet etc. Now it has progressed to a point where I can do very little without assistance. I cannot stand, so I have to be hoisted from my wheelchair to the toilet or the bed and can barely get my one slightly operative limb to my mouth to feed myself. I must be bathed and cannot even turn over in bed unaided. At least I don’t fall anymore!

I lived for years trying to stay mobile even though I was petrified of falling over or tripping over the most insignificant things or even sometimes just falling for no apparent reason. I would not or could not use stairs of any height unaided and even then I really struggled. My heart would beat so fast out of sheer fear of falling that it sounded like a jackhammer in my ears. I actually often wondered if others could hear it too.

Then came instant relief to my plight in the form of my manual wheelchair. The first time I sat in it the sense of relief was almost overwhelming. I knew then that I should never fall again. Why I persevered for so long, while cracking ribs, toes, fingers, etc I will never know. All I had to do was put my pride in my pocket and accept that I had a serious problem.

I could no longer drive and could also no longer work. I ran my own tiling contractor business and now couldn’t get on sites, where the chance of falling over building material, or into foundation channels, was very real. This business was in the building phase and would have been my source of income until I died, but after I got sick I poured all of my savings into the business in order to save it, but I eventually had no option but to shut up shop. I tried to work from home on various projects like telesales, call centre operator and others but as the disease progressed it became more and more difficult to use everyday items, like phones and keyboards, that up to now I took for granted.

Then I discovered that I could manage to type, with some difficulty yes, but nevertheless still type. I started corresponding with people all over the world who have the same disease – until my arms, after a few years, got too weak to type. My son then showed me a program on windows that provided access to the disabled. I found an onscreen keyboard where I could point to a letter and click. This was quite a slow process but I was back on line.

Last year I upgraded my computer and loaded a version of Windows 7. This program also has an onscreen keyboard but with the extra advantage of predictive text. This helped for a while but I am painfully slow.

I keep myself occupied and sane by blogging and encouraging others around the world with similar problems, but I am finding that my joints ache and my hand loses strength, after a while it becomes an effort to get my index finger to click the mouse.

I am going to try voice activation technology, which is also available on my Windows package, so I can keep helping and encouraging others and now that I have a wheelchair that allows me to rest and sit more comfortably I will be able to do it for much longer

My wife is such an uncomplaining star and works hard to provide for us but she only earns sufficient to keep us going from month to month. I would dearly love to earn a living but with all my assistance requirements it would be impossible to work in a normal office situation.

Disability: Adapt or die trying

I was quite surprised by a friend that went into tilt when he was diagnosed to have treatable diabetes. For him it was the end of the world as he knew it. He blew it out of all proportion and it took ages for me to get through to him, to help him to cope. The scourge of the “healthy” looking person who is very sick is misdiagnosis by healthy people that mean well but say some incredibly stupid things.

After the shock of being diagnosed with a rare and largely unknown disease or indeed any debilitating disease, it is of great concern to me that there is such a variety of initial reactions to the bad news.

Some are shocked into silence, others into outbursts of questions, tears are more or less the norm, anger, blame, disappointment and a whole spectrum of emotions come flooding to the fore. At this point let me hasten to add that I am not a psychologist or a medical practitioner of any kind. I am trying to expose my feelings at the time of my diagnosis and my route forward. I am not saying that my way is the correct and only way, because we all deal with trauma in our own way. But, if I can help just one person I will have accomplished what I set out to do.

I was diagnosed with Inclusion Body Myositis in 2000 after what seemed like millions of needles, pills, potions, prodding, pulling and pain. This is a very rare disease loosely translated into layman’s terms as inflammation of the muscles. Over time the muscles degenerate and eventually virtually cease to function. The disease is incurable but in most cases not life threatening. But enough about my disease.

It took me approximately three years to come to terms with my diagnosis and during that time I was totally absorbed in trying to find out more about the disease and explored all possible avenues of information and possible cures. I spent many fruitless hours searching the net and reading books only to find out that out of all the thousands of sites visited the information was extremely limited. The sites had limited information which was repeated on site after site and book after book. I accumulated copious amounts of similar information from different sites and books. I correlated all of this information, deleted the duplication and realised that very little is known about this disease. I had literally condensed hundreds of hours of investigation into one page which I could have found on the first web site visited. In a nutshell there is no cure, so learn to live with it.

At this stage I had a “light bulb moment” and I changed my focus. Now if there is only one word of advice I can give, it is this. Don’t obsess with trying to find miracle cures, drugs, potions or pills. Explore and probe for information yes, but don’t make it your priority. Leave this in your Doctor’s capable hands. Remember that they have studied for many years to do this for you. Try instead to concentrate your efforts on finding ways and means of coping and working around the disability. In other words let the Doctors handle the disease while you concentrate on life.

From here on you need to take your pride and place it deep within the deepest pocket you can find. It will only get in the way, when it comes to decision time on help aids and equipment. Crutches, walking sticks, wheelchairs, eating utensils, toileting procedures, bathing and sleeping arrangements all need to be adapted to suit your particular problem. You need to become innovative in your approach towards these help aids. What works for me will not necessarily work for you. You should also involve your family and friends in the thinking and designing aspects. In this way they become informed of your various difficulties and quite often come up with lots of clever ideas to assist your day to day living. If you struggle to feed yourself adapt your utensils to suit. Thicker handles or curved forks or spoons, raised toilet seats, raised beds and chairs make it easier to get in and out. Electronic gadgets, like can openers, blue tooth for cell phones, speaker phones for landlines, on screen keyboards, speech recognition for computers sticks with rubber tips, reaching sticks with jaws to pick up things, and the list goes on.

My point being that you concentrate your energies on making yourself comfortable rather than doing other more knowledgeable people’s work for them. There are laboratories, Doctors and scientists doing great work to cure all these obscure diseases so leave it in their capable hands.

We also need to learn strategies and coping mechanisms to be able to avoid the trips down pity party lane. Going down this lane is inevitable but the amount of time spent there should be limited by concentrating on other interests. The longer we spend there the more difficult it is to get out of it. We all have God given gifts of sight, hearing and movement. If any of these senses are impaired we have to teach ourselves to sharpen the others and use them. Get an interest like reading, writing, scrap booking, painting, photography, TV, sport, computer games, internet etc etc etc.

The operative word being, “interest”.

When you feel down, immerse yourself in an interest that can hold your attention for long enough to avoid the pity party. We do not have sufficient strength to cope with daily living let alone wasting this precious resource on feeling sorry for ourselves.

One last point I’d like to make is that we do the things that we can do, and ask others for help with the things we can’t manage. DO NOT let yourself slip into the “I am incapable of doing anything” mode. Don’t expect others to do everything for you especially when they know, and you know, that you can do it yourself. This will build resentment rather than compassion and help.

Don’t ever give up the fight for a better quality of life but try to embrace your circumstances and concentrate your efforts on improving them.

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