Warning: This column contains thoughts of suicide. Do you need support? Please contact 113 Suicide Prevention Foundation via 0900 0113 (available 24/7) and 113.nl. For Belgium: tel. 1813 and mail@zelfmoordlijn.be.

Living with a severe disability or chronic illness, such as ME, can be a challenge. Yet I find my life in balance: the happy moments sufficiently outweigh the more difficult moments. In short, for me my life is definitely worth it!

Not fair

The 'makeable world' of recent decades makes us responsible for the success of our lives. The dark side of this worldview is that failure would also be your own fault. We might like to believe that we have this much influence over our lives, but it's still misleading.

We all know that life is not all about roses and moonshine. Sometimes life is tough. This has nothing to do with 'deployment' or 'fault'. Bad luck can happen to anyone, because life isn't fair.

Setbacks

Several times in my life I have walked on the bottom of life, including before I got ME in 2015. Fortunately, my ME turned out to be fairly stable - until I deteriorated severely in 2018 due to incorrect treatment. In 2020, due to the combination of moving house, the lockdowns and the major failure of the Social Support Act, I again seriously deteriorated. I ended up lying in bed 22 hours a day.

There have been times my situation was so hopeless I seriously considered giving up. I made that promise to myself when I was 21: if the assignment becomes too big, I am not obliged to sit out the ride. I realise that for many people this may be overwhelming. To me it provides the space to keep going, because I know I can get out if it gets too much.

Get up and carry on

So my life has not always run smoothly. Yet I have found the strength to keep going over and over again, thanks to a combination of several factors.

A few times I have sought the  help of a psychologist. Some problems are too big to face alone. A psychologist can help you learn to accept what you cannot change. In addition, a professional can sometimes make other forms of support possible that you cannot manage yourself. (Services often take a professional more seriously than a client, as many of us will have experienced.)

There were also times when I struggled on alone with the courage of desperation. As I wrote in an earlier column, sometimes it really was “to swim or to drown”. With a lot of tricks I managed to keep myself above water in those times. What I have learned from these times: if you take a small step every day, you will have covered a surprisingly long distance after weeks.

Self-care

My lows are deep, but against it are also highs. I do my best - within my possibilities - to do fun things. Sometimes something simple like video calling with a good friend. Or treat myself to a nice jigsaw puzzle and put it together at my leisure. At better times I like to take a summer walk (with or without a wheelchair) or go on holiday to my beloved drum camp (with PEM when I return home). In short, I consciously bring balance to my life.

Invaluable: peer contact! I've been organising online ME Living Room Groups for six years and that mutual support is worth gold. I cannot express in words how good it is to talk to people on a regular basis who understand exactly what you are going through. (ME Central had a theme month last year about the value of peer contact, to which I also contributed.)

Finally, I am lucky to have understanding family and friends. They accept my situation, even if they cannot always do something concrete for me. Thanks to that acceptance I can guard my limits in their presence, which prevents a lot of trouble.

All in all I feel like a happy and fortunate person.

This column was publisehd on March 28, 2023 on ME Central.