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.

Update 24/10/21: It is now almost two years since I made this post and if anything my IBM has got worse. When people out of politeness or concern ask how I am, I try to be truthful without elaborating and remain positive. After all, there is much to be thankful for and while some things I cannot do or do only with lots of effort, there is much that I can do that could bless others. There is a good reason why the good Lord has left me on earth when many of my contemporaries, better than I, have been taken, and my job is to take life as it comes (one day at a time, as I wrote earlier), continuing to make a difference in those areas I am able, and to be thankful for many blessings and to live a life honoring to the Lord.

Update 22/03/25: Three years on and my IBM related conditioned has definitely worsened. These days, walking has become more laboured and while I can manage short distances on the straight unaided, that is my limit. Climbing steps at least without something to hold onto is problematic as is getting up from a seat, especially if low to normal, and I dread falling over as I wouldn’t be able to get up unaided. This does have a psychological impact and tempting to feel useless and frustrated by not doing what was once in the past normal, regular activities. One change is to recently move house to somewhere more accessible. I don’t write to make others feel sorry for me, but rather to point out four things:

1. I have been amazed and heartened by the many acts of kindness shown to me because of my condition, sometimes from unexpected quarters. I am especially grateful to family and friends, especially my wife, who has taken on more of a carer role.
2. As a result of “getting IBM” I see more clearly a case to be made for services etc. being made more disabled friendly, including toward those with my condition or similar. Sadly, I have visited many establishments that are not disabled friendly (at least concerning my condition when even climbing a not a steep step or getting up from a chair is an issue). Rather than cause a rumpus, I walk away not making a fuss. Yet there is much help “out there”.
3. This experience of progressive muscle degeneration has drawn me closer to God. It has made me more thankful. It has caused me to be more empathetic to the weak and vulnerable. It has helped me to be more humble and dependent on Him and, notwithstanding limitations, to make the most of the days that remain.
4. While many avenues of activity are now closed to me, especially if I don’t have assistance, I am finding many ways to be useful, to make a positive contribution to society and to serve others. I like to think that as a result of living with these severe restrictions, this helps me to empathize with and encourage others.