Living with M.E/Chronic Fatigue.
I was 19 when I developed a really bad case of Mononucleosis (Glandular Fever) and from there on in my health went ‘downhill’ rapidly! I had always been very athletic and played a lot of sport, so I was a fairly fit and energetic 19 year old, but I ended up at my worst bed-ridden for 7 months, racked in constant pain throughout my body, unable to bear any light at all even daylight, unable to watch television or listen to music as the pictures and noise caused excruciating pain in my head. At times I was too weak to speak or feed myself and to reach the bathroom I had to be carried or crawl on my bottom to the downstairs loo. And I’d sleep upto 20 hours a day! I hadn’t even an ounce of dignity and I had hit ‘rock-bottom’!
My doctor told my parents that they did not know if I would recover and that if I did whether I would be able to lead a normal life. I had a promising sales career in the Bank, but because of my long-term illness I watched that slip through my fingers too. Sympathy from the outside world was far and few between as to have looked at me, apart from the fact that I was very thin and very pale you would not have seen much difference on the outside. To be honest my world was completely ripped apart!
Life and the world were all passing me by and I had lost a precious time of my life to chronic-fatigue that I could never retrieve.
I made a decision in my head that I was going to get better and that I wasn’t going to lose anything else!
Yes there were days that I wanted to go to sleep and not be bothered if I woke up, but I plodded through those dark days. I think what got me through my worst times, was that everyday I pushed myself a fraction, even if I knew I’d pay for it the next day. When I say a fraction I do mean a fraction, I am talking crawling out of my bed and getting myself downstairs to sit with the rest of my family. As the months went by, about 7, I found that I could spend a little less time asleep and get out of my bed with the help of painkillers a little more frequently. I will never forget the day, about 7months into my bed-ridden phase, when I found the energy to drag myself down the stairs and sit on the front doorstep in the sun! That was a momentus moment during my ordeal with chronic-fatigue! Yes, I did pay for it the next day and was again in terrible pain but more importantly the way I had felt sitting in that sun had given me a tremendous boost. The next major milestone I remember was making it to that doorstep and after a brief rest I walked ten yards from my house to my most beloved first car and sat in it. Simple, very small events, but to me, 20 years down the road, still life-turning moments!
18 months from the onset of my chronic-fatigue I was tentatively living a fairly normal life. I still hadn’t returned to work but I was begining to feel that that was my next major step to normality. I eventually found myself a job, all be it a very different one to my previous Bank career. It was hard, very hard to cope with at first, but gradually my body got used to it and I held on in there for grim death. I was very proud of myself and it was a gigantic step. I seemed to be defying my prognosis. And, indeed, I continued to defy that prognosis when I met my husband and married and had 2 children.
I won’t try and pretend that my M.E has disappeared, I still suffer frequent painful relapses and suffer badly if I do anything slightly strenuous. Even a normal head cold can bring me to my knees. My life has been changed because of chronic-fatigue and can never be the same again! I have never been able to return to any form of sport and to this day I survive on a cocktail of drugs to lessen any debilitating or painful symptoms that everyday life may inflict upon me. But, if I was asked by a new chronic-fatigue sufferer how to survive this devastating illness, the key thing has to be to believe that you can get through the terrible times and that you can re-gain the majority of your life. Yes, it may not be the life that you had before, but there is no reason that with some very deep soul searching you cannot eventually accept the life you now have and live that life to the full. There is a positive side to most bad events in life, and one of the positive sides to chronic-fatigue is that you become very empathetic and develop a deep sense of what is really important in life. That is a quality that we should all strive for if we wish to live a fairly un-troubled happy life.