According to the first hit when I did my customary Google search of a less familiar term: “Inclusion body myositis (IBM) is a progressive muscle disorder characterized by muscle inflammation, weakness, and atrophy (wasting). It is a type of inflammatory myopathy. IBM develops in adulthood, usually after age 50. The symptoms and rate of progression vary from person to person”, and according to medical experts I have that condition. What I want to do is tell my story thus far as well as to look ahead.
I count myself fortunate that for much of my life I have had relatively good physical health, evidenced by my participation in various sports and manual labour. Later, things began to go downhill, especially when a little over a year ago my GP referred me to a hospital neurologist because of medical concerns that required specialist input when it came to diagnosis and treatment. After a number of tests that included scans, the shocks and pricks treatment and a muscle biopsy, the medics were able to conclude that I had IBM. As for treatment, there is little as I understand it in the way of cure but there were things I could do to exercise the affected muscles to help prevent further deterioration, although this is not, as understand it, a guarantee it will not happen.
As for how it affects me, this is in a number of areas. I have difficulty swallowing and this will affect my choice of food. I have difficulty negotiating inclines and limitations in the use of my legs. When it comes to hand and arm movements that I have long taken for granted, like opening jars, carrying loads and tying my shoelaces, my limitations have been notable. Earlier, I spent three hours in the garden making slow progress. There is also a psychological impact around feeling useless or a burden that must not be ignored. I am grateful for those close to me, like my wife, who help where I need it and encourage me to do the recommended exercises. I appreciate the medical help I have received, all credit to the NHS, and am receiving to come to terms with and overcome my IBM.
As for the future, that is not something I, or anyone come to that, can determine and it is a matter, as always, of living one day at a time and making the most of each day. I am grateful for what I can do and each day I find there are many opportunities where I can make a difference. I am much more aware now of the disability conundrum, which requires support and empathy for those with a disability, of which IBM is a less obvious example, and finding ways to work within one’s own limitations and doing things differently in order to negotiate the obstacles around one’s disability.