Skip to content

Patient perspective series: My experience of chronic fatigue syndrome – Hope

Jonathan Davis

THIS subject is a big deal for me just now. Now, I am all for having a positive mental outlook, “cheerfulness in the face of adversity” and making the best of what I can in my new found circumstances but I am really struggling to manage or understand what I hope for.

The importance of hope for the future is difficult to understate, it gives me purpose, drive and something to aim for and a sense of achievement if I meet my goals.

But it can also bring me crashing down to earth, into the depths of despair.

So often I hope for something that is no longer realistic. For instance; I love the mountains and I have spent all my life wanting to spend as much time as I can in them. However, I have almost completely failed to do this because of work and family commitments. And yet now, faced with the likelihood of impaired mobility for months, years or for the rest of my life, I am desperate to get into the mountains and I find myself planning how I can do it when in reality I’d be lucky to make it out of the car park.

I think a lot of what I am experiencing is down to fear; fear of losing something I had always wanted which I held back on doing rationalising that I could enjoy it more at a more convenient time. Now a flight of stairs is my mountain. But I don’t want to readjust, I want my old life back and I want to do what I meant to do all those years ago and what now I bitterly regret delaying.

I have spent, and wasted, a lot of energy beating myself up for being so stupid and not grasping the opportunities I had in the past.  This leaves me angry, bitter and exhausted. No matter how hard I want to I can’t change the past or the present in a lot of ways.  Even my scope of influencing what I can do in the future is now limited. But despite the debilitating effects of this illness and all the limitations it imposes, there is one thing that isn’t limited by it. My view. My view of myself, of what I can do and what I view as an achievement.

I’ll give you an example. A few days ago I was feeling terrible, just so sore and exhausted. All I could do was lie on the sofa, normally I would have hated myself for doing this – for giving in to my illness. But I thought about it logically and given how I was feeling that is exactly what I should have done. So instead of beating myself up on achieving nothing that day, I congratulated myself on being sensible, looking after myself and resisting the temptation to do things out of a misplaced sense of guilt.

As M.E. sufferers (I’m still not sure I like that term) I believe we have to shift to a different worldview. A view where sometimes doing nothing is more of an achievement than doing something, where listening to me and my body is more important than listening to others and what I think of myself is not in any way going to be influenced by someone who has never been in my position.

At the time of writing, there is no cure for this illness. Nothing has demonstrably been shown to consistently and effectively relieve our symptoms. How then can I hope to do something that would rely entirely on my illness being cured or effectively treated when neither I nor anyone else has control over this? Where does this leave me? In the position where I change my outlook.

I can’t hope to be cured because I have no influence on this, but I can hope to understand my symptoms and how I react to them. I can’t hope to climb mountains again, but I can climb a personal mountain every day even if that involves nothing physical or mental whatsoever.

So what do I hope for in the future?

Well, I hope to change how I hope.

Jonathan Davis is a Police Officer living in rural Aberdeenshire.  He was brought up in the Outer Hebrides before leaving home to study psychology at The University of St. Andrews.  In 2004 he joined what was Grampian Police, now Police Scotland, where he has enjoyed a varied career in a number of operational, community and partnership based roles including a 2-year sabbatical working in residential child care.  Prior to developing ME/CFS, he was a keen cyclist, climber and skier.  More recently he has devoted himself to highlighting the experiences of those with ME/CFS in their communities and raising the profile of this all too often hidden condition.

Read more on Jonathan’s blog HERE.

Leave a Reply

Your email address will not be published. Required fields are marked *