ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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ME/CFS: a member's perspective
Friday 17 June 2011
Society member Roger offers his perspective of having ME/CFS:
I have had CFS for many years and one of the difficulties I have faced is trying to explain to family and friends what it is like living with CFS. If I only say I have CFS they think I am just tired like at the end of a hard day at work, but if I tell them all the symptoms they think I am a hypochondriac with a fetish for doctor’s waiting rooms. Recently, however, I thought of a comparison which people may relate to. Almost everyone has had the flu and by that, I don’t mean a bad cold, but a full blown bout of influenza. Putting aside the more obvious symptoms like a red running nose and a cough, there are many others such as an incessant blinding headache, muscle and joint pain to the point that your bones ache, constipation followed by diarrhoea, difficulty in thinking clearly, dehydration, and fatigue.
You can, of course, “soldier on” with the flu dragging one leaden foot after the other up to the point you realise if you don’t lie down you will fall down. At this stage all you want to do is crawl into a nice warm bed and sleep, hoping that by the time you wake up you will be cured. It’s never quite that easy but usually within a couple of days you feel well enough to get up. You might feel a bit wobbly on your legs but you can watch a bit of TV, even do a few things around the house although you will need to rest after doing even small amounts of activity. You may feel like something to eat as long as it is bland and easily digestible.
On the other hand any strong smells like cigarette smoke, household chemical smells, even perfume are off putting to say the least. You can, if you are obligated and motivated, go back to work or out with friends and you might even get caught up in the moment and forget you have the flu but there is every chance the next day the symptoms will be back in force and you will find yourself bedridden for a couple more days. The good thing about the flu is that the cycle is relatively short. My mother used to say, a week to get it, a week to have it, and a week to get over it.
The difference with CFS is that you experience “the very worst day of the flu” over and over for weeks, months and often years. Eventually, just like with the flu, you do get to a point where you feel you can get up, even do a few things as long but you need to rest the moment you feel tired. However, unlike the flu, this is usually as good as it gets and the slightest over exertion will have you reliving the “worst day” again for who knows how long.
Just like the flu there are some medications that will ease some of the symptoms of CFS but there is nothing yet to “cure” either illness. The best thing to do is to manage your energy levels and diet to give your immune system all the help you can to fight the disease.
From a medical standpoint there is nothing surprising about these symptoms. They are common across a range of diseases simply because they are not caused by the disease but by the immune responses and although scientists haven’t been able to find what causes CFS I would have thought these immune responses were proof it is caused by a pathogen.
It’s true that there are many other symptoms associated with CFS than those listed above and that CFS is far worse than the flu but trying to get anyone who hasn’t experienced it to comprehend that may be a step too far.
Thanks, Roger, for sharing your thoughts.
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