A couple of weeks ago I had a cold/flu virus and I was really suffering. My body ached, I couldn’t tolerate the feeling of anything touching my skin and I hardly ate or drank for days. In short it was just a horrible experience undoubtedly made worse by having ME/CFS and I was miserable. But in the days after getting over the virus I had a spell of 3 days of feeling really quite good. It was as if my immune system had reset itself and I felt like I had energy again. My pain and muscle stiffness eased and I felt free for the first time in ages, like a weight had been lifted off me. So much so that my wife and I spent a short time snorkelling in a local bay.
I love to snorkel. We discovered it on our honeymoon, it feels like I am flying – gliding over the seabed. It requires not a huge amount of effort to get a lot out of it, I will happily just float in the water and watch the sunlight make patterns on the sand or the seaweed gently wave back and forth. I find it so peaceful and relaxing. Unfortunately I am back to my “normal” state of being sore, tired, dizzy and nauseous but small spell when I felt ok was so precious, such a boost and perhaps something that may happen again.
In the days before I had felt so ill, I never anticipated that I would have been able to be in the sea and I began to wonder what other surprises ME/CFS has in store or what good has come from being ill.
To rest is one of my new found skills. I would say I am now a connoisseur of rest! I have my favourite spot on the sofa in front of the wood stove, I arrange cushions behind my back and head and one under my knees, I wrap myself in a blanket, I turn the lights off and listen to some very gentle relaxation tracks through my noise-cancelling headphones. If I can I drift away to somewhere there is no pain and invariably I fall asleep. Prior to getting ill I had never properly rested before and it is great. Best of all I have to do it, I won’t get better if I don’t so I can legitimately rest – how many people can say they can do this or would allow themselves time to rest? When (if) I am better I will make sure I incorporate some proper rest into my daily life.
Perhaps above all ME/CFS has taught me to be patient with myself, something I have always struggled with. I am very much an all or nothing person – things tend to be brilliant or terrible with not a huge amount in between. So, as you can imagine, when I became ill I wrote myself off entirely; I was never going to ski or cycle again, I’d never achieved any of my goals, no one would want to know me etc. But this is not true, of course, I can’t manage anything like as much as I could in the past but I can do what I can and that is enough. While I was a tutor in the Police I only had one rule for the probationers that I worked with and that was no matter what they were doing they must always try their best. That is all you can ask of anyone and just because my best now isn’t the same as it was doesn’t mean it is of any less value.
I remember a long time ago I spent some time with a gentleman who had been in the Special Forces and worked with a number of Government agencies both in the UK and abroad. He told me of a time when he had injured his leg and had been sent to a hospice for rehabilitation. Whilst there he spent his time doing physio and running up and down sand dunes to rebuild his muscle strength. By his own admission, he didn’t find it hard because he was so unbelievably fit at the time. But he was struck one day when he walked into a ward and saw a number of stroke patients trying to pick up cutlery and other everyday items. He stood and watched them as sweat poured from their brows, their muscles quivered and shook from the exertion and if they succeeded in bringing a spoon to their mouth the relief and joy they expressed was so overwhelming to the point it moved the gentleman (a Special Forces soldier remember) to tears.
At that point he realised that it isn’t what you achieve in life that is important, it is the effort you put into your achievements that brings fulfilment.
I have tried to live by these words since the day he told me this and I would say now they are more salient than ever. We will not receive recognition for showering and getting dressed, there will be no ceremony for making that important stressful phone call and we will not receive any medals for braving the Doctors’ surgery or a supermarket. But we know the effort it takes, we know the determination required to fight through the pain and fatigue and we will take satisfaction in that we have achieved.
Social Media allows us to see into other peoples’ lives, I know the efforts others with chronic illness have to go to just to function every day and I want to say that I am deeply impressed. We are all doing superbly well given our circumstances. We deserve a collective pat on the back and to hold our heads high. Others may not understand our situation but that is due to their ignorance rather than any omission on our part. ME/CFS is a malevolent, insidious condition that tries to destroy every fabric our lives. It seeks to bring us into the depths of despair, pain and suffering where we lose all hope and look to cast ourselves upon the scrapheap. But this is nothing more than a symptom of the disease and it is a falsehood, do not allow yourself to be deceived. And whilst some of us may never be free of it just by not giving up on ourselves means we have already won.