What About M.E.?

12 May

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.

*

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.’

*

*

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

54 Responses to “What About M.E.?”

  1. Debbie May 12, 2011 at 14:35 #

    Excellent post! Thank you for this.

    Like

    • Tilly Bud May 13, 2011 at 10:50 #

      I’d say ‘my pleasure’ but I wish I didn’t have to write it 😦

      Like

  2. mairedubhtx May 12, 2011 at 14:40 #

    Thank you, thank you, thank you for posting this. Doctors try to treat the symptoms but no one tries to address the real problem because they can’t and trying to treat the symptoms doesn’t work. I know. I have it, too, and no one takes it seriously. I think the difference with fibrmyalgia is that the nervous system is involved. I have friends with take. I have doctors trying to treat my symptoms but even family doesn’t believe it. They like to believe you are lazy; that’s easier and less threatening. Thank for posting this, really. And I wish your husband the best.

    Like

  3. Cindy May 12, 2011 at 14:48 #

    Excellent post, Tilly. I have Fibromyalgia and it’s no picnic.

    Like

    • Tilly Bud May 13, 2011 at 10:52 #

      Cindy, I’m sorry to hear that. I know as only an observer can know.

      Sending you hugs.

      Like

  4. vivinfrance May 12, 2011 at 15:00 #

    Tilly, no non-sufferer can truly comprehend the breadth of symptoms, the disruption for patient and family alike. We can but sympathise and help where possible. I’m glad you posted this exhaustive (and exhausting) description, and will pass it on to our mutual friend Liz, who is too tired to read blogs these days.
    Love
    ViV

    Like

    • Tilly Bud May 13, 2011 at 10:53 #

      I feel so bad for Liz because I know how she loves writing.

      Like

  5. earlybird May 12, 2011 at 15:06 #

    Thank you very much indeed for this. Very interesting and informative. My heart goes out to you and the Hub – although I know you wrote this to further understanding and compassion, not in a bid for sympathy. Although you can have that too. In spades. x

    Like

    • Tilly Bud May 13, 2011 at 10:54 #

      Sympathy, ugh! (stores it away for self-pity days, thank you).

      Like

  6. slpmartin May 12, 2011 at 15:34 #

    Excellent information and post.

    Like

  7. beckysefton May 12, 2011 at 15:58 #

    This is something I’ve been given a booklet about, to read alongside post-treatment fatigue. People generally don’t believe me when I say “I’m so tired” but seriously, the tiredness comes in bouts and it really overwhelms me when I have it. What I suffer from is completely different from what your husband suffers from: I just have bouts of tiredness and lapses in concentration. I do find regular exercise and alloting myself rest periods (particularly in a busy week) helps no end. I find that when I have the fatigue it really wipes me out – those close to me understand but some people just say “she’s being lazy”.

    Thanks for blogging this 🙂

    Like

    • Tilly Bud May 13, 2011 at 10:56 #

      It had to be said.

      Make sure you ignore the naysayers and give yourself the absolute rest you need.

      Like

  8. gigihawaii May 12, 2011 at 16:47 #

    That’s too bad your hubby is suffering so much. Mine is always tired and has to take frequent naps. He forces himself to get through the work day without one, but when he gets home, he collapses in bed right after dinner. No pain, but chronic fatigue. I hope it doesn’t progress to such a point that he can no longer work or have fun.

    Like

  9. viewfromtheside May 12, 2011 at 16:58 #

    i am always glad i’ve not had something like this. i have a few friends who have suffered and their lives are hell

    Like

    • Tilly Bud May 13, 2011 at 10:58 #

      It’s good to be grateful sometimes for what we don’t have.

      Like

  10. Pseu May 12, 2011 at 18:41 #

    Good post, Tilly.
    A friend of mine has had a great deal of help from a course she went on… called??? Sorry I can’t remember at the minute. Have you heard of anythign along these lines?

    Like

    • Tilly Bud May 13, 2011 at 10:59 #

      The Hub went on once and it was helpful, particularly in learning not to overdo things.

      Like

      • Pseu May 13, 2011 at 17:42 #

        I think it was called a Lightening Course.

        Like

  11. Patti May 12, 2011 at 18:57 #

    I can hardly imagine how frustrating it must be to try to understand and deal with such an illness. Thanks for the first-hand information.

    Like

    • Tilly Bud May 13, 2011 at 11:00 #

      You are welcome, but I wish you’d got it from someone else 🙂

      Like

  12. liz May 12, 2011 at 20:17 #

    Brilliant post, Linda. Thank you for being the spokesperson for those who can’t raise the energy to make their point. Every year I think that I will write something and submit it somewhere, just to try to raise awareness, and then, blow me down, it’s May again, and I’m still here with nothing to show! Thanks to Viv, who sent me your link. My very best wishes to you and your Hub.

    Like

  13. nrhatch May 12, 2011 at 20:31 #

    You and your husband might be interested in this:

    http://nrhatch.wordpress.com/2010/11/05/using-visualization-to-ease-chronic-pain/

    It’s about guided imagery for self-healing.

    Like

  14. kateshrewsday May 12, 2011 at 21:15 #

    I have just had a hurt eye and a migraine and it blanked out two weeks. I grumbled and moaned, but reading this brings home how tough it must be to have this never-ending condition. Tilly, my heart goes out to the two of you who clearly have such a strong relationship, and your Hub who was such a high flyer. I shall remember this post whenever I meet anyone with the same condition – promise.

    Like

    • nrhatch May 12, 2011 at 21:29 #

      And ditto what Kate said!

      Like

    • Tilly Bud May 13, 2011 at 11:03 #

      I appreciate that.

      But it’s okay to feel your own pain without guilt. Who am I to say that one person’s suffering is worse than another’s? I don’t.

      Hope you are feeling better.

      Like

  15. Blossom Dreams May 12, 2011 at 22:53 #

    This is a really interesting and eye-opening post. Thanks for sharing this information.

    Chloe xx

    Like

  16. Rebekah May 13, 2011 at 15:43 #

    I read this post last night, and today I came across this:
    http://onlinelibrary.wiley.com/doi/10.1002/nbm.1692/abstract

    new discoveries…

    Like

  17. speccy May 13, 2011 at 19:26 #

    Tilly, this is great. my eyes did fill up, especially at your last line. My husband is really sporty too and coaches soccer and gaelic football- had he got ME, that would be such a dreadful loss for him!!

    Like

  18. Perfecting Motherhood May 14, 2011 at 00:16 #

    Medecine has a hard time dealing with “chronic” diseases. An acute illness is easy to address in comparison and there’s way more research put into it. They also don’t want to “overprescribe” meds but often end up underprescribing, leaving people in pain. I suffer from chronic back pain, with no surgical solution. I’ve been told I’ll have pain all my life and need to manage it. Nice! And when I ask for pain medication, I get the suspicious look that I may be an addict… Chronic pain is fun for noone and medecine still has a lot of progress to do.

    Like

    • Tilly Bud May 17, 2011 at 10:56 #

      Sadly, it does. I’m sorry to hear you are suffering.

      Like

  19. Tinman May 15, 2011 at 22:52 #

    Oh Till, I’m only reading this now, I’m so sorry for you and for The Hub, because he sounds like a lovely guy in your blog.
    I have a friend who has it too and it’s only people like us who’ve known him for years who know how much it has really changed him.

    This is a brilliant post, angry and passionate and full of love.
    All the best to both of you.

    Tin x

    Like

    • Tilly Bud May 17, 2011 at 10:57 #

      Thank you Tinman 🙂

      I try not to blog about it too often because this is supposed to be fun blog, but sometimes it slips out 🙂

      Like

  20. sarsm May 16, 2011 at 11:27 #

    Hi Tilly,

    I think there is often a lot of talk about M.E. but a lot of people don’t really know what it actually is.
    I commend you on your well-written and heartfelt post, explaining the illness and how it really is.

    Take care of you Tilly, I hope that somewhere soon, that someone will find something that really helps your husband.

    Like

    • Tilly Bud May 17, 2011 at 10:58 #

      Thanks you, Sarah. Rightbackatchya 🙂

      Like

      • Eamonn Driscoll May 18, 2011 at 10:16 #

        Hi Tilly,

        I had a similar experience to your husband, I have always been an athlete and non stop person, after completing engineering at Uni I spent 5 years as a British Army Captain and then a 12 year career in the City so being housebound with ME/CFS for 2 years was not me at all!

        I followed CBT and GET religiously without much progress and finally in desperation did The Lightning Process. I was so ill that it sounded like the scam many bloggers claim it to be, the testimonials really are incredulous. Well, I hate to say it but 2 weeks later I packed my Army rucksack and did 5 Munros in Scotland. That was in 2009 and I haven’t stopped living since

        I have pasted a URl to a similar story that popped up recently as well:

        http://www.thisisnottingham.co.uk/news/Pain-free-time-years/article-3549070-detail/article.html

        Hope this helps, any questions please ask.

        Eamonn

        Like

        • Tilly Bud May 18, 2011 at 11:41 #

          Hi Eamonn. Thanks for your comment and the link.

          I have heard of it though I’m not convinced by it; I’m glad that it worked for you. The Hub has had his CFS for 15 years and he has tried CBT, which didn’t help. He tried to exercise by walking but it fatigues him.

          My biggest problem with it is the cost: we simply can’t afford it.

          Thanks for visiting.

          Like

  21. Melanie Lewicka June 2, 2011 at 12:35 #

    Hi Linda,

    thanks so much for posting this and saying what I haven’t had the energy to say. I am learning to take things easy and am fearful for the future workwise etc, but feel I can get back to being able to care for my family properly if I rest, rest and rest some more just now. The last few weeks have been a reminder of the way I felt 10 years ago, and I have realised now that I have been managing my ME all along. I stopped managing it last year when I took a new job on top of my studies and gradually the fatigue took over again. I hope The Hub improves, and please wish him well from me. Thanks for speaking up for us and promoting a bit of understanding.

    Like

    • Tilly Bud June 2, 2011 at 13:06 #

      I’m glad to do it. Make sure you pace yourself.

      Like

  22. tattooedmultiple May 1, 2012 at 00:38 #

    Reblogged this on Tattooedmultiple's waffle and commented:
    An honest description of life with ME

    Like

    • Tilly Bud May 1, 2012 at 23:19 #

      Thanks for the reblog; the more we disseminate the information, the better.

      Like

  23. ns May 28, 2012 at 12:28 #

    Thanks for educating us about this terrible disease.

    Like

    • Tilly Bud May 29, 2012 at 08:53 #

      Just wish I didn’t have to 🙂

      Like

      • ns May 29, 2012 at 09:53 #

        Hang in there. You sound like an incredibly supportive and caring woman. And with a great sense of humor!

        Like

  24. tattooedcarer June 22, 2012 at 16:53 #

    Reblogged this on tattooedcarer and commented:
    Brilliant ME blog, makes me lol when I want to cry

    Like

Trackbacks/Pingbacks

  1. Today is National Fibromyalgia Awareness Day « Graceful Agony - May 12, 2011

    […] What About M.E.? (thelaughinghousewife.wordpress.com) […]

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  2. Graceful Agony…JKL (copied with permission) All of these are true for Lyme also… « Entire Family with Lyme Disease - May 12, 2011

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  3. What About M.E.? (via The Laughing Housewife) « braindribbles - May 15, 2011

    […] 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 footba … Read More […]

    Like

I welcome your comments but be warned: I'm menopausal and as likely to snarl as smile. Wine or Maltesers are an acceptable bribe; or a compliment about my youthful looks and cheery disposition will do in a pinch.

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