It is an exciting time for me. I first got ill when I was almost 12. I am now 47. I was ill with M.E for 35 years and now I'm not. Truly...
THIS
CHANGES
EVERYTHING
A life with M.E is a life a of loss. I can't kid myself: Many of these losses are permanent and unfixable. Over three and half decades I lost people I care about, I lost my career in medicine and I lost the time and experiences that life and youth can bring. It is perhaps the latter I mourn the most:
M.E surgically removed the prime of my life.
But you know; the thing about health and function is that the more you gain, the more you are then able to gain. I now walk a minimum of 5 miles a day and this activity increases the chances that I will be able to soon move up to six. I have no doubt I will soon be fit and strong enough to reach my goal of walking the London Marathon:
Amazing! Remarkable! Phenomenal.
Now, sadly, while I was stuck at home, disabled, for so many years I smoked. I smoked a lot. To be candid; I never thought I was going to ever get rid of M.E. What's the point of having fantastic lungs when you will never have a chance to use them? It's that phrase again, isn't it? "What's the point?" - It's an alarm bell to me now: the path towards a negative and unrealistic bias in my thinking. Anyway, my smoking has led on to COPD. I urge all M.E patients to quit smoking and to find other ways to distract themselves from the pain and the disability of M.E.
A wonderful doctor I met in London listened to my story and all that I had done to my body with cigarette smoke and, in a brilliant bit of medicine, he leant over and simply said "We can't turn back the clock, what matters is what we're doing now". And, in that instant, I was released from my guilt and regret and set to look forward: Exercise has a massive effect on my lung function. It can take me from being quite unable to breathe to mountain tops, and thankfully, M.E can't now stop me from taking this benefit.
Last week I saw a thing: An older man powering down the high street on a bicycle. Nothing remarkable, but he had a strange sort of rucksack on. It was kinda cylindrical and it looked heavy. OMG! It was an oxygen canister. He had COPD. What an inspiration!
M.E is like a straitjacket that that dynamically adjusts to resist movement. M.E assigns to each of its victims a jailer who monitors and punishes any attempt at activity. We have said before that M.E creates a stigma around patients where they are made to look like they are not even trying.
I met a man all clothed in black.
When I push him he pushes back:
Inertia.
Outside of this terrible prison, free from the ball and chain of M.E, things are very different. It has been so long I had begun to wonder whether I was a fighter, but to my relief I find that I am. I don't care that it hurts my legs to climb up mountains. I don't care that I am restarting my life from way, way, back at square one. I don't care that my body is old and broken. I see the snowdrift in front of me and I plough on forward.
But like with smoking, M.E has left me with an unwelcome legacy of additional issues that need to be dealt with.
I remain over-weight. At worst, I have been almost 20 Kg over what I would want to be. As a person with M.E I complained about the effort of lugging my leaden body around the house - but you know, the extra weight really adds to this. Consider a 2L bottle of water or soda. That's 2 Kg. Get ten of those together and that's the amount of extra, unnecessary, mass I was carrying around with me. Everywhere I went: Two shopping bags with 5 big bottles inside. It's insane. Having moved house I already know that I wouldn't want to lift above 20Kg, yet I was doing it every second of the day!
We are aware of the physical burdens we carry around, but there are also mental, or spiritual lead weights upon us. M.E attracts bullying. Throughout my adult life people have tried to use my illness in order to hurt me and to make me feel bad long-term:
I am lazy. I am a liar. I am a loser.
Abuse is a millstone around your neck, a cangue afixed to M.E patients to further increase their humiliation and absolute dependency. It is mistreatment. It is perverse. But it is what it is. From my perspective this is a fact of life, there is no changing those who bully, most especially those who bully the sick and disabled. What's important then, is one's response to such mistreatment. All M.E patients need to extricate themselves from abusive situations. They must not allow the strength and courage they show in dealing with their awful illness to be cruelly and unfairly flipped into the pretence of weakness and cowardice. This is a recipe for the destruction of mental health.
It is my job therefore to unburden myself: to remove from my life anyone who seeks to pour the concrete of personal abuse back into my veins and arteries.
Do you see a common thread developing? M.E destroyed much of my life, but it's my responsibility to make good use of what's left. Yeah, people bullied, but it is my responsibility to challenge the abuse, and if it continues to walk myself away from it. Smoking and weight... these are obviously my responsibilities to fix. Judgementally or non-judgementally, it doesn't matter, they just need to be sorted. The former I addressed in 2014 by becoming smoke-free and the latter I am addressing right now: I've got the exercise bit, I just need to address the diet bit.
A life with M.E changes you and your body, and not often for the better. The condition itself works against change and opposes our efforts to improve ourselves and our situation. But you gotta keep fighting, even when your fight is absolutely impossible for others to see. Even when fighting means choosing to rest or choosing to carry further symptoms in order to exercise.
Even if M.E reduces you to a heartbeat in the darkness, you keep on going because, well, there may be a different version of you: some future fortunate who, unshackled from M.E, will be very glad and very grateful that you did.
