This is the name I use to “explain” the many diverse symptoms of the disabling and debilitating illness M.E./C.F.S. to people who stare at me blankly looking for a “sign” somewhere on my person that indicates to them I really am ill, and to try to give this complex and very misunderstood disorder, the recognition it so deserves.
It is easy to explain away a broken leg, (plaster cast on limb) or a very bad head cold (streaming nose and eyes) but I have found that with this illness, it is quite hard to explain something that is almost “invisible” to the naked eye and yet has the most devastating of effect on a sufferers life….I am one such person….This is my story….
It all began in January 2002, when my sleeping patterns changed almost overnight, going from a person who could sleep “wherever I lay my hat” I was now lucky if I barely managed a couple of hours a night. I blamed everything….my partner’s snoring….the birds outside whistling….a car pulling into our cul-de-sac …. I lived in “ignorant bliss” that something was wrong.
I moved into the small front bedroom to “solve the problem” bought lavender essential oil by the gallon, and all manner of “get to sleep quickly” lotions, potions and gadgets. However, about this same time, I started to experience painful, heavy “lead-like” legs, difficulty climbing the stairs at work, and also dizzy bouts, that would randomly come and go and a feeling that my concentration levels where not as sharp as they once were. “Noise” bothered me more than usual, and my eyes didn’t like “glare”.
With a “lifetime” of many and varied viruses behind me, and glandular fever in my early teens, I did not think twice then, about the three viral infections that I suffered in quick succession of one another late 2001/early 2002, except to say that the last one I feel was the “final straw”….when I fell ill on an aeroplane journey to Colorado, in April last year and subsequently having to have a bed made up for me at the back of the aircraft!
How was I to know then what lay ahead of me? M.E./C.F.S. had certainly not come into the equation. So after seeing an American doctor and departing with many dollars, my trip to visit a friend turned into one spent in my hotel room watching a zillion T.V. channels on my own, feeling really ill, and many miles away from home.
On my return I blamed “jet-lag” onto the most chronic of fatigue that I was now to experience on a daily basis, which added to my ongoing list of “other” symptoms. Therefore it was not until I was on the point of collapse at work, that I went to see my G.P. who signed me off from my part-time job on September 5th. 2002, and to which I have not returned since.
As I have been Hypothyroid for the past thirty years, controlled by medication, the first step was a series of many blood tests, to rule out other illnesses. I have had so many of these tests over this past year, I began to think at one point I was a blood donor and didn’t know it! Until remembering that my blood wasn‘t “wanted” anyway due to my thyroid condition.
All blood tests came back clear, except for the Epstein Barr, which relates back to my glandular fever illness, and my ESR (Erythrocytes Sedimentation Rate) reading which has been abnormally high for two years. I’ve had a CT scan….Heart scan at Papworth, and been admitted to hospital just before Christmas last year, for still yet more tests, and to which nothing conclusive was found, except a minor chronic chest disease, which I can only think was a result of my having had pleurisy in the early seventies! So….why then was I so ill?
While in hospital it was “suggested” that I had C.F.S. which in February this year another hospital doctor agreed “was likely” So from being a once active, working, travelling, outgoing “girlie” I became housebound and dependant on others, needing a walking stick on the rare occasions that I could go out beyond my home, before “graduating” to using a wheelchair. I spent most of this summer “bedridden” and the effect all this hugely “altered lifestyle” has had on my own, and my family’s lives have been colossal to say the least.
However, there are positive things, which I have drawn from all this. Firstly I have huge support from my partner….small family circle….friends near and far….the Company I worked for….and our family G.P.
I have “self taught” myself computer skills, through necessity more than anything else. No more fearing that a “three course meal” would come hurtling out of the monitor, if I dared touch an “unknown” key. I soon found out rapidly the importance of computers in my life, as it is now. “Needs Must” and I needed to keep connected with the outside world, and this more than anything else was a powerful tool in which to do so.
To this day I still have a piece of paper over the “delete” key which I constantly used to touch in my “early learning” days, so sending many pieces of work off into “cyber-space”! I am quite impressed with all that I have taught myself, and I never would have become “computer literate” had I not had this illness.
I have also returned (when well enough) to some of the “crafts” that I used to do many years ago, and to which I find much fulfilment. My life-long love of writing still continues, but I tire more easily, and words do not come as readily as they once did, but I still maintain to keep my writing going somehow! And because my “well times” are not in plentiful supply right now, I more than ever appreciate the “importance of life” and the little things that “really matter” so much more.
So where am I now with this illness?…. Well recently I was put on a closely monitored “trial” of steroids in an attempt to “blast”….I think would be the right word….me back to health again….to try to kick start my “engine”! The effects of these powerful drugs have been not without their problems, and I now carry this knowledge of them as a cautionary note!
My G.P. has also managed to get me “funded” by the NHS, for an appointment at the M.E. Centre in Romford, and I would like to point out here, that if anyone gets the chance for an consultation there….“GO“….Although I had to stay in a “Travelodge” the evening before, and the after effects of such a journey totally “wiped me out” for over a week afterwards, it was well worth it, for I saw a Specialist in M.E. who “informed” “listened” and “cared”.
I was told I had six out of eight core M.E. symptoms, and was assessed on the ability scale between 10%/20% for the moment. But although my health is not good, I feel I shall “rise up from the ashes” that is this illness, and once more have my life back again. For like Dido’s song “White Flag” I do not intend to raise any such flag over my door!