Today is M.E. Awareness Day
(That’s only five words, but I was too tired to go on)
I wrote this for last year’s M.E. Awareness Day. Nothing has changed, so I decided to re-post it as I wrote it.
Today is International CFS/ME and Fibromyalgia 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
- joint pain and inflammation
- swollen glands
- sore throat
- hot sweats
- cold sweats
- noise sensitivity
- light sensitivity
- too much sleep with no benefit
- short-lived paralysis
- twitching muscles
- feeling spaced out
- mood swings, particularly bad moods
- lack of temperature control
- 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.
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.’
- Why Can’t Medical Science Figure Out Chronic Fatigue Syndrome? (psychologytoday.com)
- Thoughts on An Alarm System Gone Awry: Pain in Fibromyalgia & Chronic Fatigue Syndrome (blogsbyrobin.wordpress.com)
- Why Fibromyalgia could be misdiagnosed… (nashuafibrosupport.wordpress.com)
- Please – International Awareness day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivities (MCS) and Fibromyalgia (FM) (fibromodem.wordpress.com)
- Fibromyalgia FAQ: Frequently Asked Questions About Fibromyalgia by Margo Watson (drbradshook.com)