What About M.E.?

12 May

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
  • 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.’

*

*

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65 Responses to “What About M.E.?”

  1. Tinman May 12, 2012 at 10:05 #

    I remember this post from last year. It touched me then and it touches me now because it’s brilliantly written and full of protective love for the Hub.
    My thoughts are with him today, and with you.

    Tin x

    (PS I’m not ticking ‘Like’ today, it isn’t seem right.)

    • Tilly Bud May 12, 2012 at 10:27 #

      Thanks Tin.

      One thing I’ve learned in my almost-fifty years is that we all suffer with something, not necessarily ill health. For me, the coping recipe is a dash of laughter, a dollop of pragmatism amd an abundance of love.

  2. Tinman May 12, 2012 at 10:06 #

    Ok, ok, last sentence doesn’t written right….

    • Tilly Bud May 12, 2012 at 10:28 #

      :)

      Could have been worse: you could have written ‘I’m not licking ‘Tike’ ‘ :)

  3. Elaine May 12, 2012 at 10:19 #

    Great post. I was one of the people who didn’t understand the condition but, when a friend’s young daughter was finally diagnosed with it after years of accusations that her parents were somehow making her ill deliberately, my eyes were opened. There are still too many people who don’t understand/take it seriously.

    • Tilly Bud May 12, 2012 at 10:25 #

      I didn’t take it seriously either, until the Hub got it. Raising awareness is important, which is why I occasionally post on it.

      Thanks for your comment :)

  4. Genie May 12, 2012 at 10:35 #

    Thanks for the info. Best wishes to you and your husband.

    • Tilly Bud May 12, 2012 at 10:36 #

      Thanks Genie.

    • Tilly Bud May 12, 2012 at 11:04 #

      I wanted to comment on your blog but it wouldn’t let me.

      That second picture is quite startling.

  5. judithatwood May 12, 2012 at 10:56 #

    I had almost no info on M.E. until I read this post. Thanks so much!

  6. Jim May 12, 2012 at 11:05 #

    Just count the M.E. as a run-together two word entry and you’re at six T.B. I used a couple of ‘ands’ this morning to make my six.
    I have a blogging friend in Yorkshire with M.E. He was diagnosed at age 27 and became a writer after that.
    Jim’s Six Word Saturday

    • Tilly Bud May 12, 2012 at 11:06 #

      Thanks for the tip, Jim :)

    • Jim May 12, 2012 at 11:17 #

      And T.B, I am sorry but the link I gave you was bad.

      This is the CORRECTED LINK:
      Jim’s Six Word Saturday

      • Tilly Bud May 12, 2012 at 11:52 #

        Not that bad! I got to see your trip to London :)

        • Tilly Bud May 12, 2012 at 11:54 #

          Argh! My browser is playing up. I haven’t been able to visit half my usual blogs and now it won’t let me visit you, despite the fact I was just there.

  7. speccy May 12, 2012 at 11:12 #

    It’s still a very powerful post, Tiily, with a killer punch. Extra hugs for Hubs x

    • Tilly Bud May 12, 2012 at 11:52 #

      Thanks Speccy. I know you know how he feels :(

  8. adinparadise May 12, 2012 at 11:19 #

    I would say to that insensitive perso, “Be careful what you wish for.” ;( I’ve known a couple of people who have suffered from this debilitating condition. I think that many years ago, sufferers were not taken seriiously by their doctors. I’m glad that they’ve become more enlightened, but so sorry for your darling hubby that a cure hasn’t been found yet.

    • Tilly Bud May 12, 2012 at 11:53 #

      Thanks ADIP. You know what might help him? Some belly dancing pictures ;)

  9. vbr May 12, 2012 at 11:54 #

    I do not understand why it is so hard to get this type of illness acknowledged, let alone diagnosed. Must every illness be accompanied by a gaping wound? I am so glad that your husband had been able to get a definitive answer. And, I hope that you too are making sure that taking care of YOU is just as important as taking care of him. Caregivers are angels on earth.
    (I have to ask, – is Lyme’s disease (contracted from deer ticks, usually) a problem in your area? I recnetly read several articles relating to allergies and it was mind boggling to learn how many chronic illness have this as an underlying factor.)

    My best to your husband and to you!

    • Tilly Bud May 12, 2012 at 11:57 #

      Thanks :)

      I’m not aware of Lyme’s in this area. I did look into it because I know there are similarities between the conditions.

      And thank you, I am taking care of me – blogging for several hours each day keeps me sane :)

  10. Ron. May 12, 2012 at 12:58 #

    I, too, remember this post. Since I encountered it, I’ve met two people who suffer with this. Thanks for keeping us in the loop, TB. Hang in there.

  11. Piglet in Portugal May 12, 2012 at 13:35 #

    A friend of ours has Fibromyalgia he told me all his nerve endings are imflammed and he is in consant pain. He was in a wheelchair at one time, but since spending a lot of time in Portugal he can at least walk, albeit with a stick. When ever I have aches and pains I now think get over it. ***** never complains and just gets on with life. I admire him and the way he just gets on with life. I’ve now learned what he needs and when him and his wife come over I quietly make sure he has the right sort of chair, or this or that without fussing. He is such a positive person.

    • Tilly Bud May 15, 2012 at 11:29 #

      Believe me, he’ll be grateful, and will count you as a true friend.

  12. The Wanderlust Gene May 12, 2012 at 13:36 #

    I don’t mind not having a jolly Tilly piece. A dose of what’s what never goes astray. I wish, I wish … lol :)

  13. vivinfrance May 12, 2012 at 13:42 #

    I ticked like because I like the campaigning that you do to get recognition. Love’nhugz, V

  14. Brenda Youngerman May 12, 2012 at 15:04 #

    Great post.. and I personally know several people and kindness is about all you can offer :)

    • Tilly Bud May 15, 2012 at 11:55 #

      Thanks. Understanding is good, too :)

  15. betty May 12, 2012 at 15:19 #

    I am so sorry to hear this; I know of a few who have this; it does affect every one in the famliy indeed. It is good there is a day that recognizes sufferers to educate the majority of people of how awful it is dealing with such an illness.

    betty

    • Tilly Bud May 15, 2012 at 11:56 #

      Yes, it is. Change will happen, but slowly :) :(

  16. gigihawaii May 12, 2012 at 16:27 #

    For the past 5 years or so, my hubby’s energy level has really gotten worse. He is always complaining about feeling exhausted. Thinking Low-T was the culprit, he began injecting testosterone in his thigh once a week, but still is tired. Then he had a sleep apnea test and the neurologist said it was his twitching feet, not apnea, which was waking him up at night. So for that, he has to do special exercises.

    I am now wondering if he has the beginning stage of chronic fatigue syndrome. Does this condition develop slowly (as above) or suddenly?

    • Tilly Bud May 15, 2012 at 11:58 #

      They say it comes on suddenly, but it crept up on the Hub. There are many conditions that cause fatigue so it’s worth getting David checked.

  17. laurieanichols May 12, 2012 at 17:05 #

    Tilly that was a wonderful post, I could feel your love, support and sadness for your Hub with every word. I know about the disease, I know someone who has it and it breaks your heart. You are an inspiration Tilly as a caregiver. You’re great.

    • Tilly Bud May 15, 2012 at 11:59 #

      He makes me great. He puts up with so much :(

      But thanks :)

  18. SchmidleysScribbling May 12, 2012 at 17:41 #

    Goodness. I wondered what had happened to your husband. FM is also considered a type of arthritis these days along with Lupus. Also, Lupus is included with the Leukemia family. I think most of the time, the scientists don’t have all the answers. What seems clear is that humans are complicated and little things can go awry and turn into big things. The Hub is lucky to have you. Just make sure you take care of yourself. Caretaking is tough. Dianne

    • Tilly Bud May 15, 2012 at 12:02 #

      Lupus is one of the things they checked. I was relieved that one came back negative!

  19. Aspergers Girls May 12, 2012 at 17:48 #

    I have all these conditions. So thank you, much for sharing. :) Hugs, Sam

    • Tilly Bud May 15, 2012 at 12:03 #

      I’m sorry you have to suffer, Sam :(

  20. ashantithompsonart May 13, 2012 at 00:02 #

    I’m positive I had CFS about 5 years ago but It was never diagnosed. Western medicine doesn’t address these problems because lets face it, western medicine is always looking for that miracle pill thats gonna make them that almighty dollar and there is not enough people that suffer from this to make a profitable margin. That’s just speculation but I was highly active until my Junior year in college and it just came outta nowhere. I went to doctors for years with no helpful outcome. I decided to researxh the problem myself and I ran across this book called “The Science of Breath”. It’s a book that holds it’s bases in Eastern medicine. It definately wasn’t an over night process but it has helped me a lot. To the point where I’m highly active again. You come in to this world by inhaling a breath of air and you leave this world by exhaling your last breath. It’s something worth looking into.

    • ashantithompsonart May 13, 2012 at 00:08 #

      …and one more thing. Think of all the illnesses where shortness of breath is a symptom. Is that the effect or the cause or maybe a snowball effect where they feed off of each other? Good luck to the both of you.

      • Tilly Bud May 15, 2012 at 12:04 #

        An interesting question…

        Thanks for your input; you’ve given me something to think about.

  21. bluebee May 13, 2012 at 00:24 #

    A GP explained fibromyalgia to me as a molecular meltdown in the brain, which often occurs post-virally. I’ve read the results of some of the scientific studies for CFS as well and, although few seem to be able to pinpoint the causes, it seems that biological factors that adversely affect the brain are almost certainly involved. Very debilitating for people afflicted with it and, as you say, so hard for their families too :(

    • Tilly Bud May 15, 2012 at 12:07 #

      It seems to be multiple factors that trigger CFS/ME, never just one. And every patient has a different combination of symptoms, making it difficult to treat.

      Typical Hub, to get an awkward illness :)

  22. grannymar May 13, 2012 at 01:05 #

    This condition so often hits very active busy people.

  23. callmecate May 13, 2012 at 16:05 #

    It sounds miserable indeed. I hope moments of joy sneak their way in there from time to time.

  24. Katherine Gordy Levine May 14, 2012 at 22:36 #

    Used this as the basis of o my days blog post. Linked to your post.

    • Tilly Bud May 15, 2012 at 12:11 #

      Thank you again, Katherine. The more we talk about it, the faster things will change.

  25. Perfecting Motherhood May 15, 2012 at 05:57 #

    I know I told you about this a few months ago but did your husband ever try holy basil? I really think it’d be worth a try, especially when you have tried so many things already.

    • Tilly Bud May 15, 2012 at 12:13 #

      I don’t remember that! Must look it up. Thanks!

      • Perfecting Motherhood May 15, 2012 at 17:10 #

        Go for the super extraction type, it’s more potent. It lowers the inflammation everywhere in your body, and possibly improves your mood. Without it, I couldn’t barely move because of my excruciating back pain. Today, I’m 95% pain free.

  26. autumn May 16, 2012 at 19:52 #

    Thanks for your post. I meant to write one up as well, but could not get the energy together at the same time my mind was thinking straight. I’m always happy to meet a fellow survivor.

    • Tilly Bud May 17, 2012 at 11:33 #

      I try to raise awareness when I can. :)

  27. eof737 May 21, 2012 at 05:35 #

    Touching… and we all have our stuff.

    • Tilly Bud May 21, 2012 at 11:30 #

      That’s true :)

      • Harry Nicholson June 2, 2012 at 09:51 #

        A fine and informative piece, Tilly. It leaves me wondering what the medical ‘first cause’ of the ailment might be, and what keeps it going.
        I hope your loved one soon climbs back to his former vigour.

Trackbacks/Pingbacks

  1. THINK IT IS ALL IN YOUR HEAD? THINK AGAIN. « Emotfit's Blog - May 14, 2012

    [...] What About M.E.? « The Laughing Housewife. [...]

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