This year, 2010 and ME

Last year I wrote about how I'd been living with Chronic Fatigue Syndrome or Myalgia Encepthalomyelitis, which I think is a lovely sounding name to describe a right bastid of an illness. While it had affected me badly in 2008, I thought it worthwhile to think about what I'd done in 2009 and how I am now.

Since I arrived home last Thursday I've slept approximately 17 hours a day. I had always said coming up to Christmas that I'd be taking time off and that the holidays were going to be about eating, reading and sleeping. These I have done, sleep being the priority. I'm revelling in its reparative powers, allowing thoughts to process and ideas for the new year to form.

The ME has been quite bad in the last year. The brain fog continues to affect simple memory and linguistic functions - at worse I lose the thread of a sentence mid flow and have little idea of what I was talking about (perhaps a good thing) while at other times simple words or phrases will just not appear in my mind to be said (ironically, I'm not sure of the proper way to say that).

The pain - fibromyalgia - has continued unabated, a constant presence with some days much worse than others, nightime being less about sleep and more about finding a position where my joints don't hurt. The fatigue hasn't been too bad - Sundays tend to be a literal day of rest - and hasn't prevented me from doing too much but my moods have been quite often manky and I'm surprised that certain people have been able to put up with me.

Despite all that, 2009 has been an exciting and productive one, and one I'm proud of and not ashamed to celebrate - many many festivals and events attended and volunteered on, a new job, new friends, lots of opportunities, lots of memories and experiences.

It's presented many challenges - no better or worse than those faced by others - friends lost, opportunities missed, promises not kept, lessons learned the hard way - but overall I feel I took it head on - simply because that's the only thing I could do. Whatever the downsides, the brilliant people I met in 2009 were by far the bes thing about it.

It was a year I became a real media whore - contributing to 4FM, i105107, Newstalk, Morning Ireland with Radio One and being caught on TV cameras on a couple of occasions. I've been in a lot of newspapers and some magazines. I've spoken at conferences and masterclasses.

The position with Boards.ie has widened many of the doors I had opened and moving from Community Manager to Communications Manager was a sensible and mutually beneficial move for all concerned. It teaches me a lot but I bring as much to the table. 2010 will be, in may ways, the make or break year for Boards.ie and it will be interesting to see how the input of management, of employees, of volunteers and of members will shape it and bring it closer to failure or success.

2009 also saw me work and volunteer with the Irish Blog Awards, with the Abbey Theatre, with Barnardos, with the National Campaign for the Arts, with the National Gallery, with Cinemagic, with Darklight, with the St Patrick's Festival, with the Street Performance World Championships, with the Carlsberg Cat Laughs and Comedy Carnival festivals, with Eircom, with Bórd Gáis, with the Dublin Gay Theatre Festival, with the Dublin Writers Festival, the Jameson Dublin International Film Festival and the Dublin Theatre Festival, with the Science Gallery, with Culch.ie, with the Labour Party, with the National College of Ireland and Metro, with Arthur's Day and the Guinness 250 Celebrations, with ABSOLUT Fringe for the first time, with the Cork Jazz Festival, With Sony Ireland, with Toys 4 Big Boys, with ReachOut.com and more.

I got to interview and chat with many different people who do really interesting things. This in itself has inspired me in at least one project for the new year that I'll definitely be asking for help with.

I've had lots of cups of coffee with lots of people talking and advising on social media. I've had lots of invitations to events and previews. I've worked hard and benefitted from it. Laziness was never an option. Enough of that done in the past.

2010 then will be an interesting one - a busy one. I'll be launching at least two websites and podcasts and involved in the launch and implementation of more - including at least one very high profile site. I'll be event blogging and tweeting.

Most of all though I'll be working. There are a number of tourism and charity initiatives I want to assist on, as well as continuing to support the arts. As smarmy as it sounds (and belive me, I know how smarmy it sounds) I continue to appreciate the opportunities and rise to the challenges. I continue to look forward to getting to know people.

No new year resolutions for 2010. I don't need them - the to do list is long enough without them.

Happy New Year to you and yours. Hope you enjoy it. Coffee soon? :)

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.

M.E. - WHAT IS IT?

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.

Information from Irish M.E. Trust

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)