Today Is M.E. Awareness Day

12 May

The Hub has M.E. and I had intended to write about it and him but – somewhat ironically – after the day I’ve had, I’m too tired to blog.

Instead, I will re-post last year’s article (which is actually a re-post from the year before, but nothing has changed so I don’t feel guilty), and ask you to spare a thought for people like the Hub, facing prejudice and disdain from those who believe he is too lazy to work, on his best days; and too lazy to get up, on his worst.

 

Today is International CFS/ME 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’, 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 many more months for him 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
  • sinusitis 

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, take them to appointments, 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 yourself: slow down; don’t feel the need to do everything.  Believe me, M.E. 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.’

*

Two Useful Links:

If you need help claiming benefits: AfME Fact Sheet

From a convert to the cause: Daily Mail Article

 

About these ads

19 Responses to “Today Is M.E. Awareness Day”

  1. McGuffy Ann May 12, 2013 at 19:10 #

    I understand very well. It is painful & embarrassing, at least to me. Hugs.

  2. Janet Williams May 12, 2013 at 19:38 #

    Well done for increasing my awareness in this. Don’t we all need a bit of understanding, and just keep quiet if we don’t know what to say? Sometimes people say things that they think they mean kind, or casual — as they think they need to say anything at all, but what they say can be hurtful. Take care, both of you.

  3. viv blake May 12, 2013 at 19:42 #

    Shared on FB again – the more the message is repeated, the more awareness is raised.

  4. benzeknees May 12, 2013 at 19:46 #

    Thank you for sharing this with us. I’ve been following you for quite a while & knew your hubs was sick, but just not what with. Happy Mother’s Day Linda!

  5. CarolCarol May 12, 2013 at 20:33 #

    “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.”
    You just said it all. My very best to you, your husband and your family.

  6. idiosyncratic eye May 12, 2013 at 21:28 #

    Hugs to both you and your hubs. :)

  7. sharechair May 12, 2013 at 22:43 #

    Please pass my good wishes on to your hub. Lucky man, him, to have you fighting the awareness fight. Hugs to you both.

  8. rumpydog May 12, 2013 at 22:50 #

    It is sad. Of course now days they think that if you don’t have one of those “acceptable” conditions such as heart disease or cancer (well, here in the US, anyway, because doctors treating those conditions make lots of money) you just need to take an antidepressant and all will be well. Doctors make me feel sick, so I stay away from them.

  9. colonialist May 12, 2013 at 23:48 #

    That is a nightmare!
    It reminds me of seasickness, in a way. Those who don’t get it simply cannot have sympathy for those who do. They somehow don’t believe it is ‘real’. And these are folk who would be filled with concern if one had an ulcer or something.

  10. Katharine Trauger May 13, 2013 at 00:17 #

    Thank you so very much. I have a new friend who had fribro, as she calls it, and you have helped me imagine what it is like without grilling her for the info, and also you have helped me imagine what on earth I can do to be a “good” friend. I value this post lots! For once, it beats any humor you could have dished out! :)

  11. laurieanichols May 13, 2013 at 00:51 #

    I know that the Hub has a horrible illness and I think that both you and he are such strong wonderful people, always ready to do the nicest thing for the people that you love, ready with the smile and the witty word. I am definitely a big fan. Big hugs for the both of you!

  12. vastlycurious.com May 13, 2013 at 03:14 #

    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.!!!!!!

    I have always lived by this creed!

  13. David J. Bauman May 13, 2013 at 03:59 #

    Thank you for this. My sister-in-law suffers from Fibromyalgia, so I understand a bit of this. Your man has a good lady by his side.

  14. Three Well Beings May 13, 2013 at 05:59 #

    This is a very important “share” today. I have friends with Fibromyalgia and Chronic Fatigue Syndrome. It has changed their lives in innumerable ways. I’m very sorry for the way your husband has been so dramatically affected, and I don’t even know what to say to people who criticize and judge. One of the things I say most often is that none of us ever knows what a day will bring in our own lives. I thank God every day for our good health, and recognize at the same time that it isn’t a certainty. Bless you and the Hub!

  15. fairywonderdust June 9, 2013 at 19:36 #

    I just found your blog after a google search about me/cfs. Great posts on the condition, good to read. I have ME too so know only too well what your husband is going through. I have just written about mine on my blog in case youre interested: http://fairyaboutme.wordpress.com/ you blog is very funny otherwise cant wait to read more from you!

Trackbacks/Pingbacks

  1. Laughter and love | Janet's Notebook - June 1, 2013

    […] Paul has been “a bit poorly“ and their lifestyle has changed dramatically, but,  bu, their love is ever so […]

All comments are welcome, though compliments may result in you having your Malteser privileges revoked

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

The Cvillean

The adventures of little read writing Hood

Guernsey Evacuees Oral History

An Overlooked British Evacuation

Janie's Place

Welcome to the Great White North....

Follow

Get every new post delivered to your Inbox.

Join 1,110 other followers

%d bloggers like this: