Disability:   Adapt or die trying


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.