Wednesday, December 31, 2008

This year, 2009 and ME

In June of this year, while making a cup of coffee, I dropped a cup out of my hand.

Big deal, right? The cup didn't break and I was obviously not paying enough attention. I was no doubt thinking about some email I had to answer, a text I had to reply to or a blog post to be written. My mind wasn't on it, I wasn't focussed on what I was doing. Clumsy me. Don't do it again.

But I did it again. Over the next while I found myself dropping things more and more at infrequent intervals. My mobile phone. A book. The shopping I was holding. A glass of water. There was no connecting factors, no particular time of day or night and no activity bar mental planning I was doing when it happened, it just did. I kept on putting it down to me not focussing, not paying attention.

At around the same time I was doing a lot of things and enjoying them. Meeting new people, attending and volunteering at events, doing bits and pieces for charity as well as managing a full time job. I was tired though. Not just my usual tired, but exhausted. As in I began to have days when I couldn't get out of bed and I'd sleep for hours, exhausted. Couple that with regular insomnia and the need to do things and all in all it became a cycle of activity, tiredness, activity, exhaustion, less activity, more exhaustion etc.

I'll admit, before it's pointed out to me, that I was probably doing too much and not taking care of myself. I ate only when I remembered to, I spent far too much time online and I pushed myself to fit as many new experiences in as I could. I was doing what I wanted to when I wanted to. I'd had some sort of flu a few weeks before, but that seemed to go for the most part. I was fine. I was having fun.

Therefore I regarded the exhaustion as much more a hindrance than a warning. It was horrendously disconcerting - my motivation dissipated with my enthusiasm and productivity. I lost passion, excitement and mojo. So I cut down on a lot of things. Gave the mind and body a break, I thought. Cut my full time job to part time. Didn't go out as much, didn't exert myself, tried to focus. Couldn't. Energy returned in waves, but not to what it was. It was frustrating and (literally) depressing.

The pain started in my shoulders in July. I'm typing too much, I thought. I'd take breaks, exercise and massage them both but wow, would they hurt. And then stop hurting. And then the pain spread down my left arm. Like me dropping things, there seemed no set agenda, it would come and go - not a stabbing pang or a dull ache but a sharp cramp that would last anything from a couple of minutes to a few hours. It moved to my right arm. It was sore.

What's wrong with me, I thought. Probably nothing. I ignored it, went on trying to do what I was doing. Failing miserably. I lost more and more power in each hand, my brain telling my hands to grip things, the message being confused and lost on the way. I had no focus left, my mood was dark, my memory shot to blazes.

Climbing a small flight of steps one day my right knee gave way under me. It wasn't anything dramatic and I hadn't hit it off anything, it just wouldn't take my weight and I stumbled. Foolish me, I thought, I'm not paying attention again. Then that started happening regularly, with pain appearing in both my legs, causing agony when I walked.

I was sore. I had no energy. I felt awful. Sleep, though often, provided no rest. I laughed it off thinking "I'm getting old". I succumbed to the fear not that there was something wrong with me, but that there wasn't anything. That it was all in my head. That it was just stress. That I was imagining it.

Finally Niamh, as tired of my complaints as concerned for my health persuaded me to go see a doctor. I expected to be placated with a few vitamins and a warning to take it easy. Not so. After tests the doctor suspected a neurological virus, referred me to a consultant neurologist to find out what was wrong and suggested it may be the early signs of MS, which has pain, depression, fatigue, joint stiffness, loss of muscular power and more as symptoms. Further tests at a different doctor thankfully ruled that diagnosis out, but that's where M.E. was first suggested to me.


MYALGIA = Muscle pain
ENCEPHALOMYELITIS = Inflammation of the brain & spinal cord

M.E./C.F.S. is an complex and debilitating physiological illness involving neurological and endocrinal dysfunction and immune system dysregulation which is not improved by bed rest and can worsen with physical or mental exertion. Those affected also complain of many other related symptoms such as fever, sore throats, painful glands, muscle weakness, headaches, joint pains, sleep disturbance, confusion, irritability, poor concentration, and others.

I would have to get something awkward.

M.E. or Chronic Fatigue Syndrome is a condition and illness I've been reading a lot about since August. Wikipedia cites it as the most common name given to a poorly understood, variably debilitating disorder or disorders of uncertain causation. The illness is also known as chronic fatigue immune dysfunction syndrome (CFIDS), and outside of the USA is usually known as myalgic encephalomyelitis (ME).

Basically, after effort or stress, people with M.E. suffer pain and fatigue, rendering them almost useless. It fits a lot of my symptoms - these days I can't spend too long at the laptop for fear of headaches, I haven't gone running in months and, most lamentably for me, my ability to remember names and words has rapidly diminished. When introduced to someone, I struggle now to remember what their name is, only a few minutes after being told. When writing, I find my ability to type descriptive adjectives other than "good", "bad" and "nice" difficult. I can't remember the words for things, the names of TV shows, the useless trivia I'd filled my head up with. I never considered myself a writer, but these days I find it hard to put a sentence together.

Chronic Fatigue Syndrome itself is extremely difficult to diagnose. In fact, there's no test for it, it's an illness that requires the doctor to rule out many others that could cause similar effects. Such was the difficulty in analysis that for years it was seen as yuppie flu, a case of hypochondriasis, of malingering. In fact it wasn't until 2003 that a clinical diagnostic criteria was developed and published.
According to the CDC, CFS involves:
  • Fautigue, unexplained, persisting, "not due to ongoing exertion" and not substantially reduced by rest. The person myst have experienced a significant reduction in activity levels.
Four or more of the following symptoms:
  • Impaired memory or concentration
  • Post-exertional malaise
  • Unrefreshing sleep
  • Muscle pain (myalgia)
  • Pain in multiple joints (arthralgia)
  • Headaches of a new kind or greater severity
  • Sore throat, frequent or recurring
  • Tender lymph nodes (cervical or axillary)
Here's the most difficult part though - "when symptoms can be due to other conditions, the diagnosis of CFS is excluded" AND the symptoms (particularly the fatigue) should persist for at least six months. I'm now in month five or so with no sign of it clearing.

You know what though? It could be worse. (Hiya, Bernard!)

First and foremost, at least I know I'm not imagining it. Secondly, I have to eat chocolate to help alleviate the symptoms. Most of all though, I'm not in hospital, I'm thankfully not in the position of Kiva Humphries who needs a new heart and I've got amazing friends and family who have been supporting me. I haven't been able to work since August, so January sees me knocking on Prosperity Recruitment's door, CV in hand, ready to face the working world again.

I'm not sick. As a friend of mine would say, it's only a detail. It just means a change in how I do things, a regard for when I do them and the odd sit down. That's not too much to handle at all.

I've also been thinking a lot about this blog and all the people I've met and interacted with through it. You'll have noticed quality and frequency of posts dropped. Replies to comments dropped off. I did pretty much everything you shouldn't do with a blog, through a combination of lack of concentration and motivation. It became a task more than a pleasure so I've let it slide, only to come back to it renewed. Possibly not to the same extent I once was, but invigorated all the same.

2008 has been an amazing year. There's been events like the Shine Unconference, Cinemagic, St Patrick's Festival, The Blog Awards, Darklight, Kings of Concrete, The Cats Laugh, Creative Camp, The Dublin Writers Festival, The 4 day movie project, Spencer Tunick, Hello Sheila, The Street Performance World Championships, 2gether08 in London, The Festival of World Cultures, the KCLR interview, the Newstalk 106 slots, Fáilte Towers, Podcamp Ireland, The Irish Web Awards, Chain Reaction, and, well you get the idea.

I've also made good friends. This time last year I didn't know Grannymar, Elly, George, Annie, Rick, Raptureponies, Anthony, Maxi, Sinéad, Jen, David and Debs, Sinéad, the Internet's Ben Kenealy, Little Miss, Suzy, Redmum, Grandad, Derek Marie, Peter, Green Ink, Green of Eye, Andrew or indeed my younger sisters, who my father was or anything. I hadn't met people on Twitter, didn't know many Irish bloggers and didn't have the same opportunities. It's been quite a personally fulfilling year in more ways than one.

Next year? More of the same, or better. Hopefully. ;o)


  1. So that is the effect meeting me had on you! ;-)

    The ME road is frustrating and it is one club I don't want people to join me in. LISTEN to your body, don't tell Elly I said that or she will nag me :(

    May the year ahead open new doors. Doors of acceptance, opportunity and deep friendships.

  2. I once went on French exchange and my exchangee couldn't get her head (or tongue) around my name and called me Sinbad for a week. After that, I feel I could answer to most anything. You're officially excused if ever you forget my name as long as you keep calling Mr Doyle. It's a pleasure to know you.

  3. 2009 is going to be your best year yet despite or maybe because of the ME. Just dont let it run your life and you ll be fine. I d include apostrophes above except my damned keyboard is acting up...

  4. You HAVE to eat chocolate? So do I... ;) We should do that more often.

    Love and such for the New Year, here's to a great one!

  5. You have my sympathies. Bummer.

    Herself and I have had it for a long time, and it is something that you learn to live with. The main words of advice I would have are to listen to your body, not to push yourself [not even out of frustration] and to pace yourself and not to take too much on.

    One of the worst aspects is that it is a hidden ailment. Even close family can mark you down as neurotic! It is an invisible ailment that only sufferers can appreciate.

    The only aspect that really bugs me is the limit to social life. The Blog Awards had me flaked for a week, and even the filming meeting to Le Cirk took its toll.

    It's hard to get a happy medium.
    And you are not alone!!!

  6. Wow... thats if a brilliant first blog for me to read ...... amzing what come along to literally knock you off your feet, and how you have no choice but to just cope and get on with it ... after all, what else can you do ???

    and you get to eat chocolate !!!!!

    here's to 2009, and many more visits to your excellent thoughts

  7. Wow, Darragh, good luck: I'll finally de-lurk to say hello and HAPPY NEW YEAR!

    2008 was the year I was diagnosed with fibromyalgia, after months of professionals deciding between it and ME: lots of similarities it seems. The dropping things, confusion, overall pain and bone-weariness---I can relate to all that, and wish you very well and best of luck.

    I hope 2009 brings you wonderful things!

  8. Since you paid me a visit, I've decided to come see you. :)

    I'm sorry you have to face ME but at least you know what it is. And Susan and I, will always be willing to aid you by saying, "Eat chocolate!"

    I plan to visit more often. With a couple of days off, I'll be able to catch up on what I've missed. Here's wishing you the very best for the new year!

  9. Happy New Year - really enjoy reading your blog from here in New Zealand and I am sure 2009 will bring you many more experiences to equal those of 2008.

  10. My main New Year's resolution was to stop only reading & lurking on the fab blogs I've found & to join in . . . delighted you've written such a heartfelt piece - here's to a fab '09 dude

  11. Very well written.

    I wish you strength and forebearance.

  12. Happy 09 Darragh I hope its a good one. Finding your blog this year has been great. Maybe your finding it difficult to write, but it doesn't come across in your posts at all and I've enjoyed reading them.
    Enjoy all the chocolate!

  13. What a beautiful, honest post. Good on ya for sharing this one. It speaks volumes about the blogging world.
    Let's raise a toast to blogging in 2009, bet it'll be even better than 2008!!

  14. It sounds like 2009 is going to be a year of self learning for a lot of us.

  15. Are there any CF/ME blogs in Ireland? If not, then you, Grannymar and The Other Fellow could think of starting one as a focal point for info...

  16. "I would have to get something awkward."

    Darragh, I love the honesty in your approach to M.E.

    I feel sure that with your level of insight, you'll soon find the right balance to make it work 'with' you rather than 'against' you.

    Here's to lots more fun in 2009!

  17. Hey Darragh. So sorry to hear about the ME. I know you'll cope, fate only gives people stuff they can deal with (ooh that was deep, and I've only had one cocktail). Here's to 2009 - opportunities, trials, tribulations et al. May it be filled with happiness x

  18. Hi,
    I landed on your blog through Chris Brogan's post: No Comment.

    I am touched by what you describe, you describe it very well, no confusion at all in it!

    I hope that you'll be fine, sincerely.
    It seems that you are in Ireland? I've been there a couple of years ago and literally fell in love with Ireland (I've been in Donegal!!)

    All the best!

  19. I'd be one of the first people to agree that you push yourself too hard and stretch yourself too thin. You do need to take better care of yourself boy! (Yes I am yer Ma)

    Happy New Year D. Hope 2009 will be as much fun as 2008.

  20. I also have to second Lottie in what she said about you pushing yourself to hard and to thin, I seem to remember telling you this in possibly January of last year and did you listen to me?? Did you heck!!!
    All you can do is do your best and as much as you can, don't feel as if you're letting people down or you have to do things and make yourself worse then already, only do what you can.
    Here's to 2009 and hopefully a better, more fun and laughs then 2008 and less hurt and hearbreak. Love ya ya evil little man. xxxx

  21. happy new year darragh !

    i hope you have a better year healthwise and your honest in your blog again is very powerful

    talk soon,

  22. Hey Darragh,

    Really well written and informative post, have to say I've never heard of ME before and its really opened my eyes. I've had depression for years, and generally though i was medicated for a time and soon decided to steer clear of it, i'm fine with it, if anything just the awareness of it is enough for me to see through it. I liked what you were saying about listening to your body and looking after yourself, good advice, something thats hard to realize and all too easy to forget. Thanks for posting that. All the best. s

  23. Love and Light to you Darragh!! You're a 'lil ray of sunshine and my life is richer for having met you!

    Hope 09 is a stellar one for you!

  24. Blimey Darragh, that's a tough one. But it sounds like you've got a sensible and balanced approach to the situation. Best of luck with the journey and a happy 2009!

  25. i had selfishly wondered if you were tired of conversing with me, then became concerned for your mental health when you seemed to disappear from blogging and even twitter. its comforting for me at least, to know what's up and that you arent dying or suicidal (yes thats what i thought at the time). not so comforting to you to find all this out though especially as there is no cure for it.

    i know you can face it with optimism though - you seem to have that quality in you. keeping you in my prayers.

  26. this is such a beautiful and touching post. it's inspiring for us, your readers, to have you share so much with us. and to me in particular it's amazing to see how you face ME with positivity. it's a lesson.
    best wishes for 2009!

  27. Another ME affected lurker comes out...
    There's a lot of it out there- loads of exhausted folk who can't string two words together, remember anything at all, or hold down a job. Chocolate, however, is always good. Keep well, do half as much as you think you can, and do whatever it takes to keep you feeling like yourself!

  28. Well, I for one am glad you've been diagnosed...

    I know how tough it's been for you this year, not knowing why you were feeling the way you were. Now that you know, you have something you can grapple with, I have no doubt your life will improve. And you have a great support team around you whenever you need it. Ok?

  29. Wow all, thank you so much for your comments! The level of encouragement and support I've received from you has been extraordinary. Thank you.

    Grannymar: Gerrouadat you! Your help and advice through this has been extremely appreciated, and yes, I'm listening. Thanks for the wishes for the new year. The same and more back to you.

    Sinbad: You know that will stick now, don't you? Thanks, but the pleasure is all mine.

    Damien: Thanks. I'm fully intent on keeping it only as a detail, not a reason. I'm hoping you're right about the year, apostrophes or no ;-)

    David: Yep, I have to. Green & Black's dark preferably.

    Richard: I'm surprised that so many people I know are affected! The not being alone part of your comment is important, thank you. Elly in her comment suggested a blog about ME. Mightn't be a bad idea.

    Moon: Exactly - what can you do? But you can see the help and support I have so it's not so bad. Thanks for visiting.

    Susan: Thanks for de-lurking. Happy New Year to you too. Fibromyalgia is - excuse my language - a bitch. I may have co-morbid fibromyalgia, they're waiting to find out, so I can empathise. Best of luck back to you.

    Hope Exactly - at least I know what it is. As for what you've missed - not a lot ;)

    cupidstunt - Cheers and thank you.

    Nuala - Welcome and well done on joining in. Will we be seeing a Nuala blog this year?

    Ken - thanks.

    Jennifer - thank you! Will do my best :)

    Charmed - Toast raised :)

    Matt - Indeed.

    Elly - always with the good ideas, you. I'll have to contact the other two.

    Steph - Cheers my dear

    English Mum - No need to be sorry for me, but thank you. I do appreciate the concern.

    Claudia Hello there and welcome. Thanks for the visit. Yes, I'm in southern Ireland. Will you be back to us?

    Lottie yes mammy. (Good god, another one, I'm up to at least 8 at this stage!)

    Mary Oh I listened. I could have been doing more! Love you too x

    Conor - cheers dude. Look forward to connecting with you this year.

    Allthelightsarebroken - thank you. Glad I could inform you about the ME - your point about awareness is very valid. Thanks for the comment.

    Green of Eye - Right back at you. Hope things are going well. You are missed here!

    Jen - Congrats on the new blog! Thanks for the good wishes.

    Donnam13 - Ah no Donna, never tired of talking, me! And no, not dying, not suicidal, just MIA :) Thanks for the prayers, my dear.

    Tatty - I'm no teacher but if a lesson can be shared, I'm glad.

    Speccy - welcome. Chocolate is always good. Cheers for the advice. I'm following it!

    Darren - Ok :)

  30. Darragh, you're truly an inspiration. Seriously, I wish I had as much passion and verve for life as you do.

    You're going to have a brilliant '09 m'dear :)

  31. Annie - it's all photoshop :) I do hope my 2009 is as good as you think it'll be!

  32. Hi Darragh, another fantastic post. Hope 2009 is a very happy and healthy year for you and yours.


  33. Darragh

    Happy New Year.

    Halfway through this piece you include the sentence "I never considered myself a writer, but these days I find it hard to put a sentence together." ... The evidence of this rest of your eloquent post belies this comment.

    It was to very good to meet you and work with you at Chain Reaction 2008. All the very best for your continuing adventures in 2009!

  34. Sorry to read your story, Darragh.

    There are two M.E. national groups in Ireland: the Irish ME Trust (who you linked to) and the Irish ME/CFS Association - for Information, Support & Research (Irish ME/CFS Association for short).

    They/we recently changed our name from the Irish ME/CFS Support Group which is the more common name you'll find if you do an internet search. Our website is very very basic currently: . We're in a period of transition and felt doing things on the ground for Irish people was the most important thing as the Irish ME Trust have a good website and people can benefit from websites in other countries. When you're an all-volunteer group run by people with ME and their loved ones, you can't do everything.

    Anyway if you or anyone contact us you'll get a 22-page free information pack which amongst other things has over 100 first names and numbers of people around the country who are willing to talk to others.

    Information from ME groups is likely to be more patient-friendly than a lot of information on the web which can be written by people selling stuff or people who have little knowledge of the illness compiling articles. ME is a controversial area and there's a lot of rubbish written. Be careful about any recommendations to try to exercise yourself better.

    Best wishes to you and any other PWMEs* reading this for 2009

    *Persons with ME - works better as a singular (i.e. PWME=Person with ME or ME/CFS))

  35. good friends are always good
    thanks mate appreciate that very much :)

  36. Not sure how many people reading this will be interested but the E-mail address for the Irish ME/CFS Association is out of action and has been out of action for over a month. Often the messages aren't bouncing back either. In the meantime, people can write to the old address the group used before it went fancy: . Bit of a bummer as the Irish Independent had a big piece on ME during the week which included the E-mail address:

  37. Hey Darragh,

    Found out about your plight from Grandad's other persona (The Other Fellow) and I stopped over to wish you all the best. As a sufferer of a different type of but just as obscure affliction and it's after affects, I just wanted to let you know I empathize with your situation.

    You'll handle it alright, I'm sure of that. It's a bother for sure but life has a habit of testing those it finds worthy and all that.

    In the meantime, when you're out there running your rear end off make sure you take time out for the proper meals and rest breaks (it only takes 10 to 20 minutes per...). Don't wait until you're my age to start being smart about these type of things (trust me when I say this). ;)

    Take care now.

  38. I was diagnosed with CFS 7 yrs ago, after experiencing much of the same stuff you're talking about. The more I tried to fight it, the worse it got till I was bedridden. I'm better now - try to listen to my body, try to limit myself to stuff I can do without exhausting myself.

    I don't think you ever rly learn to live with CFS though - at least I've never come acros anyone who has. After 7 yrs, I still find it difficult to take a break before I collapse, to accept that I can't do stuff that other people my age can or even stuff that I could do not too long ago. Of course, it could be that I'm exceptionally slow :)

    Just yesterday, I decided to start a blog - abt myself, abt CFS, and abt random stuff that one thinks abt when is forced to spend the entire day in bed cause of fatigue.

    I'm a first time blogger and would rly love any comments/suggestions on it:

  39. Hi -

    I came across your blog in the usual way - following links from one blog to another to another. I also have ME (I'm in the US where we're stuck with the horrible name CFS). It sounds as if you and I have similar attitudes about living with CFS - that is, an emphasis on the LIVING part. I'll be back.


  40. Best of luck with the continuing adventures in 2009! Thanks so much for sharing.

  41. Darragh and anyone else interested in ME (or CFS) subscribed to this thread:

    I thought you might be interested to know that a US ME Expert, Dr Derek Enlander, is giving a talk at the Mount Herbert Hotel, Herbert Road, off Lansdowne Road, Dublin 4 on Thursday, June 18 at 7.45pm.

    He specialises in ME, CFS and Fibromyalgia.

    Further details are at: