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?I would have to get something awkward.
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.
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: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.
Four or more of the following symptoms:
- 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.
- 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)
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)