May 12th marks Florence Nightingale’s birthday. It is suspected that she suffered from an illness akin to mine and thus is the day chosen to raise awareness of this most mysterious, relentless and life crushing condition: Myalgic Encephalomyelitis, sometimes known as Chronic Fatigue Syndrome or Post Viral Fatigue Syndrome. My contribution is an intensely personal one: to share the following three entries from my journal with a view to affording non-sufferers a glimpse of what life is like. The context in which these entries are set is the struggle to get from day to day and, in particular, to fulfill my family and work commitments while feeling my strength ebb away and symptoms proliferate.
Tuesday 26th February 2013
‘Oh dear. It is not good just now, not good at all. Over the weekend I had hellish, excruciatingly painful bouts of diarrhoea. Still soft this morning. Symptoms are running very high. Hyperventilation and head swimming, exhausted and uncomfortable, aching. Didn’t sleep well last night and am now in bed at 6.30pm. Meditation during the day is almost like the desperate act of someone drowning. So busy at work but achieving so much less because I’m so debilitated. Just now, head is swirling and neck, shoulders and back ache terribly. No assistants in tomorrow–yippee! Just keep going!‘
Monday 18th March 2013
‘There are only so many synonyms to describe how truly awful this is. I think on top of all else I’m developing a bout of sinusitis. Head so sore today, vision dissociated, tic in left eye. Did virtually no work. Aching, exhausted and now starting to feel low, bitter and sad. This spell has dragged on since January. I’d challenge anyone to withstand this. I haven’t had a single day recently that hasn’t had either grinding misery or acute scary spells. Over the weekend I did precisely nothing other than read, watch Ashes to Ashes or pick mum up. Yet I still feel so ill. So very, very fed up of this. No escape route anywhere. Life loses its joy, colour, texture and I turn into a blob. It is so difficult to perceive managing again, to feeling capable, jolly, accepting. In truth, being ill every single day really is taxing me to the very limit. Quiet frustration indeed. I have no vitality, I find it impossible to go with the flow; I’m ill, fatigued, helpless and hopeless. Yet tomorrow I must get up and do it again. Perhaps the best way is to be unthinking–the opposite of mindful–because being mindful of how I feel is simply amplifying it. Also, my craving for junk food is back with a vengeance. The crappier I feel, the more I want to eat crap food—ach, this too will pass, this too will pass….’
Friday 7th June 2013
‘It would be an understatement to say that the last few days have been difficult. On Tuesday I had no flu symptoms and managed the whole day at work by pushing it. On Wednesday, just felt really unwell, masses of symptoms so much so I said to my boss at lunchtime that I had to go home. Was wired and tired, couldn’t rest and got very little sleep. Stayed in bed and worked there on Thursday morning then went into work at 12.40. My sister drove me to the train station and I got a taxi from Haymarket to work to conserve energy. Had meetings before my committee meeting. Went to the committee room where it was incredibly warm which I think was the last straw. Within a relatively short time I felt very uncomfortable: hot, heart racing, palpitations, aching chest wishing that the meeting would be over quickly so I could escape. After a few minutes it became unbearable; thought I was going to pass out so I made my excuses and left. I ran cold water on my wrists and lay down. I had a full blown acute episode which refused to subside. Every time I sat up, the world swayed. I’d permanent burping, rigors and feelings of alarm. After a couple of hours an ambulance was called and we went to Edinburgh Royal. Got lots of sympathy for having ME but not one person knew what to do. In fact, the A&E doc asked me! Advised her–rest only. ECG was fine, BP 166/90, HR high, temp 38.5. Classic signs of my nervous system cracking up. This episode was so long–must have been from just after 3 until after 5 before it subsided, maybe even later. It was absolutely, deeply, horribly unpleasant and scared my work colleagues too. And then the saddest thing of all today. I missed Eilidh’s graduation. I got up and got dressed but that effort sent my heart rate soaring. I couldn’t risk having another episode at her school so packed Eilidh off, alone, in a taxi. Wept about it. For the next few days I won’t be far from bed–clear I need lots of rest.’
I haven’t been far from bed since. I didn’t make it back to my work. The struggle continues.
For more information, stories and poems: May12thBlogBomb