Many years ago I suffered over a year of a mysterious, extremely debilitating disease which, despite every test my doctor could think of, evaded diagnosis and was eventually given the label Myalgic Encephalomyelitis (though the ME Association prefer Myalgic Encephalopathy nowadays.) After listening patiently to my long, sorry story, one doctor concluded that, in his opinion, I had been through an extended period of extreme stress, running on adrenaline for far too long, and this adrenaline had crashed through my immune system like a ball in a pinball machine, causing my unmitigated exhaustion. This all encompassing fatigue was accompanied by a myriad of other small, annoying symptoms which all conspired to bring me down to the lowest point in my life, which had already seemed bleak enough before the onset of this malaise.
Sixteen or so years on from that bad patch in my life I have all but forgotten about it. Miraculously, I got better with a combination of time, homeopathy, probiotics and all the techniques I could find in my desperation to get better. Taking each day moment by moment and step by step (as superbly illustrated in the spoon theory below) was the key player in rebuilding my life. Before my illness, like many others, I was wholly dismissive of ME/Chronic Fatigue as a psychosomatic illness, or laziness on the sufferer’s part; until you have felt such complete, constant, continual exhaustion it is almost impossible to understand how someone can go from being fully fit, active, functioning and healthy to being so debilitated. It is frustrating in the extreme for the sufferer – and those around them.
I was luck, my system eventually righted itself after just over a year, but I know other people can suffer for much, much longer. Amazingly, not only did I recover fully but I have gone on since to have a much richer, happier, fuller life than I ever had before – I have climbed mountains, thought nothing of cycling 50 miles, and walk at least 3 miles every day… I hope that is a small ray of light to any reading this who may currently be suffering from CFS. Turning on my radio this morning I was reminded of this illness in my past, which, as I have said, in my current healthy state I had all but forgotten I even suffered from. There was a ‘Prayer for the Day’ about it being Chronic Fatigue Awareness Day, and something the lady said I felt summed it up better than I had heard the condition described before, the speaker was praying for all those who have ‘lost their strength and confidence…’ and I thought, what a perfect way to put it – for that was exactly what I had done at that point in my life, I had lost all my strength and confidence, and my body needed time to heal and recharge. It had been through an extremely tough time emotionally and it needed peace, and sleep and rest. It is almost impossible to see that clearly when you are in the middle of it, when the act of simply getting up and showered leaves you having to go back to bed and sleep for 4 hours, but the only way to heal, I found, was by being gentle with yourself and slowly rebuilding your strength and energy step by step.
I am pleased to see that there is far more awareness now about the condition, especially by doctors, the majority of whom I came across were highly skeptical about the disease’s real existence at the time. The doctor who used the pinball analogy was the only one who was really empathetic and helpful, but even he could offer little by way of advice, as it was a condition little understood then, and which even today remains unexplained in many ways. All I can say is it does exist, it is a desperately awful thing to experience because not only do you have to deal with the disease, you have to also deal with all the people who think you are ‘just being lazy’ – but most importantly I want to say — YOU CAN FULLY RECOVER — If you are a sufferer reading this right now you might be thinking ‘oh yeah, but she probably didn’t have it as badly as I do…’ let me just say that the having to go back to bed for hours after having a shower was a reality for me for months, and I could never even begin to describe the pain of putting my feet on the floor every morning to get out of bed, I would have to sit there for ages until I could face putting my weight on my feet. The desperation I felt at the time pushed me to the absolute limit of my endurance and even made me seriously consider ending it all… I am so very glad I did not! In the years since I have achieved far more than I could ever have dreamed possible and have physically far exceeded my fitness levels before. I was in my late 30’s when I “lost my strength and confidence” I am now 51 and thriving. I literally took my recovery one painful step at a time. I would rest/sleep for 55 mins, having set an alarm, and then make myself do something for 5 mins (like, unload half the dishwasher)… as I gradually coped with this I extended it to resting for 50 mins and doing something for 10 mins… etc – combined with eating an extremely healthy diet and trying a range of anything else I could find that might help, I got better. If you are still breathing, there is hope, I promise you – I am living proof that you can get better, but it takes time and an awful lot of going easy on yourself. For anyone reading this who is a sufferer at the moment I wish you well, from the bottom of my heart x