What About M.E.?

Today is International CFS/ME and FM Awareness Day.

That’s a mouthful so, in layman’s terms: millions of people across the world suffer unexplained fatigue, excruciating pain, the stigma of being called ‘lazy bones’, and are generally considered too idle to work.

Please consider me sticking two fingers up at those who say my husband who, before he became ill, ran his own business, travelled all over sub-Saharan Africa, trained under-14s at football, was a qualified referee who covered as many as five games every Saturday, set up and ran the official MCFC Supporters Club of South Africa and occasionally came home to remind himself of what his family looked like, is lazy and too idle to work.  I don’t buy it.

I don’t know how much you know about ME but here’s a bit of info to get you started:

It has many names, including:

• Yuppie Flu
• Myalgic Encephalomyelitis
• Chronic Fatigue Syndrome
• Post-Viral Fatigue Syndrome

Fibromyalgia is similar but not exactly the same, though I can’t really tell you the difference; and I don’t think it matters to those who suffer from these dreadful and debilitating conditions.

It robs you of a meaningful life.

You will spend your time in a haze of pain, exhaustion and prejudice – because ‘you don’t look sick’.  Someone once said to the Hub, ‘I wish I had it; I could do with six months off work.’  Now that person does have it, and it’s been a lot longer than six months.  I don’t gloat over that because I wish nobody had it.

Symptoms vary from person to person.

That’s one of the reasons it’s so difficult to diagnose and treat.  It doesn’t help that many in the medical profession don’t believe it exists.  It took two years before the Hub was taken seriously by a doctor.  He would be in bed for weeks.  When he could drag himself to the doctor’s he would invariably be told to ‘take two paracetamol and go to bed.’  One doctor said he needed a psychiatrist.

When a doctor finally did take him seriously, it took another six months or more to be officially diagnosed: the only way to do it was to rule out anything else.  He has had every kind of scan, blood test, whatever, available on the NHS.  They were thorough, but what a waste of money.

Then, once diagnosed, you are left to get on with it because there is no cure.

A few of the symptoms:

• severe, debilitating and disabling fatigue
• poor concentration
• brain fog
• poor memory
• useless sleep i.e. you never feel refreshed
• muscle pain
• headaches
• migraines
• joint pain and inflammation
• swollen glands
• sore throat
• hot sweats
• cold sweats
• noise sensitivity
• light sensitivity
• anxiety
• insomnia
• too much sleep with no benefit
• short-lived paralysis
• numbness
• twitching muscles
• tinnitus
• blackouts
• depression
• feeling spaced out
• mood swings, particularly bad moods
• nausea
• IBS
• lack of temperature control
• allergies
• chest pain

This is not a complete list.

Not pleasant, is it?

So, if you know someone with CFS/ME or Fibromyalgia, please don’t take it personally when they cancel a long-standing date or seem fidgety and uncomfortable when you visit.  They simply don’t have the required energy.  If they live alone, offer to help with their shopping or anything else they might need.

Be nice.  Don’t judge until you’ve walked a mile in their shoes – you’ll have to do it, because they can’t walk a mile in any shoes.

And be careful, slow down, don’t feel the need to do everything.  Believe me, it can happen to anyone.

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An apology: I had intended to write a good-humoured piece that would send you on your way with a smile and hopefully leave you thinking a little about this illness. 

I couldn’t do it.  The sufferer has all the suffering, but their loved ones have to stand by, helpless, watching as their lives go on hold.  I hate it.

The saddest thing he ever said to me was, ‘I never got to play football with my own children.’

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http://www.afme.org.uk/allaboutme.asp?table=contenttypetwo&id=4

http://chronicfatigue.about.com/od/whatisfibromyalgia/a/understandfibro.htm

http://chronicfatigue.about.com/od/whatischronicfatigue/a/understandCFS.htm

http://chronicfatigue.about.com/od/forfriendsfamily/a/lifeafterfmscfs.htm

http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrofactsheet.htm

http://chronicfatigue.about.com/od/whatischronicfatigue/a/cfsfactsheet.htm

A Girl Can Change Her Mind If She Wants To

Image via Wikipedia

Write about a mistake you can learn from.

I hope I learn from every mistake.  I’d be pretty stupid not to.  Einstein put it best:

The definition of insanity: doing the same thing over and over and expecting a different result.

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Who annoys you more, Justin Bieber or Lady Gaga?

No third option?  The WordPress prompter with inane questions?  What if I hadn’t heard of either of these two Glee-featured singers?  Gleatured?  I love neologisms.  That (neologism) was a fairly new definition to me, by the way, and is a posh term for homemade word.

Sorry, what was the question?

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Pick a blog or blog post you enjoy and write a post about it.

I will just say in frigid and haughty tones that I don’t need a prompt to do that, thank you very much.  When I read something or someone I like, I share it and always link back.

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Write about something you want to do, but know you shouldn’t.

Poke fun at the prompts.  I know I shouldn’t because I’ll never be Freshly Pressed and might even be silenced one day.  I must remember to save all my posts for posterity.  Let’s see…an average three posts a day over a couple of years…equals…an awful lot of work…

Dear readers, don’t you think the WordPress prompts are awesome?

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Joke 49

Two philosophers were in a restaurant, discussing whether there was a difference between misfortune and disaster.

“There is most certainly a difference,” said one. “If the cook suddenly died and we couldn’t have our dinner, that would be a misfortune – but certainly not a disaster. On the other hand, if a cruise ship carrying the Government was to sink in the middle of the ocean, that would be a disaster – but by no stretch of the imagination would it be a misfortune.”