It’s 1am and, having retired to bed two hours ago, I’m back downstairs writing this. Sleep is a strange and erratic bedfellow. Sometimes I can’t get enough of him, yet at other times he eludes me completely.
I am 54 and have chronic illnesses (yes, plural – it seems that over the last 3 years I’ve been collecting them like unwanted co isolation prizes). At the last count, the list was thus: Lupus SLE; Antiphospholipid Syndrome and Osteo-arthritis. I also have two tiny brain aneurysms, have had a mini stroke, have sleep apnoea, pulsatile tinnitus and a movement disorder. If I’m not travelling to a hospital appointment, I’m at home, or close by. If I do venture out, I can manage an hour or so in a cafe or browsing one or two local shops. Then I have to go home to rest. I HAVE to. The fatigue causes light-headedness, panic attacks, folding torso and flailing arms, any or all at any one time Claudication (is that the right word?) means my legs turn to concrete and I can no longer walk or drive myself home, My husband is my rock and I cling to him like a scared, timid mouse. But those are good days. Others I can’t move for the enveloping, stifling, pain and fatigue. Those days I sit in my own fug of unwashed-ness with traces of days-old make-up still on my face.
Several factors keep me awake and I never know which it’ll be till it’s there staring me in the face. Pain, obviously, is a biggie. As are the odd neuropathic sensations, muscle spasms, restless legs, a folding torso.
Tonight, though, it’s my own thoughts keeping me up. These are the biggest aides to insomnia and no pill is going to numb them. My life has shrunk to such an extent that a seemingly trivial aside or comment on Facebook or in person can take over my thoughts and cause me to relentlessly stew. As was the case tonight. A friend commented on the great “social” media site that she was lonely because family and friends were too busy to call her. I wanted to reply, defend myself, say “Yes, too busy surviving day to day! Call me! Ask how I’m doing!” But of course I didn’t. Facebook is the place where I present my positive, up-beat, bubbly public persona. No problems here! I’m fine, really! As I am out in the street, dressed and make-up on for the first time in a week, people say how well I look, that I must be getting better. (Ha ha to that, I think to myself!)
But at night, when my darling husband is sleeping soundly beside me, and when my guard is down, a different me rears its ugly head. This me is fearful, anxious, mournful for my old life and the energy I had. This me is resentful of all the pills I have to take to keep me going and of the CPAP keeping me breathing. Sometimes this me just no longer wants to be.
And sometimes this me is SEETHING! If my blood wasn’t so sticky,it would be boiling! How dare I get these ailments! Why me? Haven’t I suffered enough in my life (that’s a whole other story!). Why can’t I be the bright, fun, enthusiastic, sexy woman my husband met 8 years ago?
So I get up, creep downstairs, and write. Put things into perspective. In the dark silence of night I can write with the total honesty that I just cannot muster during the day. Then,purged, I can sleep for an hour or so and wake up feeling “fine, thanks”!
No-one but you, fellow survivor, will read this. I hope it helps you in your dark times, or inspires you to try the writing business for yourself. If not, there’s always online Mahjong
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