Why I hate ME
M.E., or Myalgic Encephalomyelitis is not a pleasant complaint.
One of it’s most insidious problems is that it is invisible to others. There are no streaming noses, or rashes. You don’t look any different and others are therefore unaware of its existence.
To the sufferer though, it is a debilitating affliction.
Its symptoms are many and varied and seem to bear no apparent relation to each other. The most obvious one is the fatigue. Any form of physical exertion leads to an aftermath of pain and exhaustion. And by physical exertion, I don’t mean running a mini-marathon – it can be anything from going shopping to mowing the lawn.
Once the fatigue sets in, then all bets are off. The sufferer can do nothing but rest and wait for the aches to pass. Again, one of the symptoms is that the fatigue doesn’t set in at the time of the exertion, but rather a day or two later. That person, dancing their heart away at the party may look absolutely fine to others, and in fact the dancer feels fine, but a day or so later is a different story. That party could result in an aftermath of days of suffering.
There is no current cure for M.E. Occasionally sufferers go into remission, but this is uncommon. It is apparently a lifelong condition. There is no medication as the illness itself is not really understood by the medical profession. Medication is purely a matter of relieving the symptoms by taking pain relief.
The best way to cope with M.E. is to take the philosophical approach. There is no point in complaining, or waiting for a miracle cure, so acceptance is the only answer. The critical lesson that sufferers soon learn is the approach of pacing oneself. If there is a function in the offing, then rest for a few days beforehand, and build up the energy. Be prepared for a period after when the fatigue sets in. Never plan on doing two exerting things within days of each other.
M.E. is predominantly a woman’s ailment. 60% to 85% of sufferers are women so the male with M.E. is uncommon. Recently I read an excellent article by Darragh who has discovered that he is a victim. It was a brave post, as the majority of men will not admit to such things as physical weakness and tiredness. It is seen as ‘unmanly’.
Take heart, Darragh.
You are not alone.
Filed under: Health on January 17th, 2009
Me too, pun intended.
Six years down the line and I now manage to live 3 consecutive days of what others call a ‘normal’ day! After that I can lose up to 10 days. I have often compared the loss of energy to a plug being pulled in a bath and the energy draining like the bathwater, only faster. My colour drains with it.
Short term memory, concentration, appetite, taste and energy can all go.
I have been told to avoid:
Stress
Pollution
Tobacco smoke (sorry)
And to ease back on the mental activity on the bad days
Although having a heart complaint as well, is no bonus for me.
But I could be worse, an awful lot worse!
Hi Grannymar.
I have had it for quite a while though it’s only in the last couple of years that it has developed to its current level.
In my case, apart from the fatigue, I have the memory loss and lack of concentration. There are loads of minor irritations, but probably the worst is the restless legs which drive me MAD. I’ll probably write more anon….
The only really effective way to combat ME is to develop a sense of humour!
Pipe tobacco is good for it though!
Too right!
The only way through this illness is to be philisophical. It’s like a dress rehersal for every ailment in the medical text books (and then some!). The pain I can cope with. It’s the neuro stuff. It can really do your head in. If you let it.
The most important thing is to keep (and improve) the sense of humour. An absolute must for preserving the old sanity. One of my top tips. A pity they don’t give out tickets to comedy gigs (more useful and therapeutic), insted of the pills they try to shove down your gob. Which are as much use as a chocolate teapot. Believe me!
On the subject of men and ME. Gents do get it just as much as the ladies. It’s just that the moronic medics refuse to admit that blokes can get this illness. Boys, call it denial on the part on the moronic medics. They refuse to see that ME is an equal oppertunities illness and strikes anyone -regardless of gender – with ruthless efficiency. The moronic medics really should stop divvying up illneses into male and female lists. Illnesses don’t operate that way. Poor simple minded creatures. Then again, it’s wicked to mock the afflicted. But, with a highly educated but totally stupid and unintelligent target such as these, it’s so much fun!
Hi Sal and welcome!
Another of the proncipal symptoms of ME seems to be a distrust of the medical profession, all right. In fairness to them [I try to be fair?] it is not an easy affliction to diagnose.
Also, I think that there is a tendency for men to deny that they have it in the first place. Of course that is the worst thing to do, as percevering with the suffering as that will only make things worse.
There are benefits to ME of course. One of the main ones is the ability to watch a film or read a book many times, as one forgets that one has read or seen it in the first place. There are some films that I have seen three or more times, only realising half way through that I might have seen them before! In these days of crap television, that is a bonus.
Seeing as I have opened this little can of worms here, I would doubtless return to the topic a few times [and probably repeat everything again?]. As you say, there are so many joyful little ‘side ailments’ that there is enough material for a dedicated blog…..
One of my friends got this condition a few years back – and he was so poorly it looked like he would never work again.
There is a private clinic that I have used for pain management in Torquay and I recommended this to my friend – after four weekends treatment there he was back at work and has never looked back. When it started he couldn’t get out of bed – they work miracles in that place – I know first hand!
Glad I found your post here. I stopped by and wished him well. I can empathize with him in my own way but he does seem to already have the right kind of attitude to handle things as they come. I’ll be stopping in at his place now and then to see how he’s getting on though.
Thanks for letting us know about this.
Kate: All I can say is that I am very glad that this struck after I left work. There is no way I could cope with the daily grind and life would be sheer hell. Maybe the next time in Torquay?
Kirk M – He is a pro;ific blogger yet this is the first time he has touched on the subject. I hope he does a bit more on the subject.
Definitely – its alternative treatment with an amazing success rate – you have my email address if you need the phone number – people go there from all over the world to get treated for a variety of ailments….