As regular readers know, I’ve been trying to write a book about my life with M.E. for several years now and sharing little bits on my blog as I go along. As one of only a tiny few severely affected people to have recovered enough to put pen to paper I feel it’s vitally important to document my experience, but it’s a tortuous process as I can only write one short paragraph at a time on the days my battered brain feels up to the challenge. In truth, I might be drawing my pension before I finish the sodding thing!
During the early years of the illness when I was at my most severe I tried every treatment known to man and some that man had never even heard of! I spent 2 months one summer living in a caravan with my Mum and having experimental treatment at a private Clinic in Lancashire, during which time I tried various supplements to try to alleviate my myriad of symptoms. My body has been unimpressed by chemicals from the start, though, and the following excerpt describes my experience with the supplement Melatonin:
“Two weeks later and I’m starting to see tiny signs of improvement. My speech is now almost back to normal and I’ve taken my first few gazelle like steps on stick thin spindly legs. I’m also able to chew more solid food without becoming exhausted and can watch a whole thirty minute episode of Emmerdale Farm without having a fit. Who knew Jack Sugden and a cow’s udder could make a girl quite so happy.
I still can’t sleep, though, no matter what I do and am still only managing about three broken hours each night. Jan swears by something called melatonin which is produced naturally by the brain and is one of the hormones which is disrupted when you have jet lag, and this evening has been kind enough to let me borrow one of her little white pills to try. I swallow the tablet with high hopes, then switch off the fluorescent strip light stuck onto the wall below the window and snuggle down in to the surprisingly comfortable foam mattress, the muscles in my legs twitching and jerking as I relax. Mum is pottering around getting ready for bed and after a few minutes I hear the sheet rustle as she climbs onto her bunk at the other end of the caravan followed by the flick of pages as she opens a book to read, her wheezy breathing from years of heavy smoking rhythmically breaking the sultry air.
I dread the night. The second I close my eyes and retreat into the darkness my brain treats me to an exploding light show and the pain I’ve managed to keep quiet all day finally demands to be heard like a petulant child. Pins and needles stab my hands and feet while the rest of my body hums with pulsing, jolting electricity, the nocturnal silence spoiled by the sound of piercing tinnitus ringing in my ears. I am way beyond tired, my blood so weak it can barely pump itself round my veins, yet sleep eludes me and I lie in the gloom overwhelmed with sickness so all-encompassing the outside world ceases to exist. Please God, I pray, let me just rest because I don’t know how much longer I can go on feeling this ill without a break.
God’s answer is swift and unsympathetic. My brain suddenly lurches in my skull and then I’m falling through space, hitting solid ground with such force that every bone in my body feels broken. What the hell?! My eyes spring open and a tidal wave of nausea washes over me, metallic vomit rising in the back of my throat. The sensation of falling hits me again, and again, and I bolt upright, yanking on the strip light in the hopes that if I’m no longer in the dark the feelings would stop. They don’t.
‘Everything alright Sweetie?’ asks Mum, laying her book face down on her lap.
I try not to sound panicky as I reply ‘I think I’m having a bad reaction to the melatonin.’
Mum comes to perch on the edge of my bunk, rubbing my back with her hand. ‘What’s happening?’ she asks anxiously.
‘I dunno. It feels like I’m falling off a very tall building in my brain’ an explanation I know sounds bonkers but I don’t know how else to describe it.
‘Is there anything I can do?’
I shake my head and force myself to breathe slowly in and out trying to calm the reaction down but it only serves to make me dizzily light headed from lack of oxygen. To feel like I’ve just jumped out of a plane while sitting motionless on my bed is bad enough but the thud as I hit the ground is excruciating as my nervous system is unaware the whole thing isn’t real so fires off pain signals like I’ve been shattered into a thousand pieces.
Mum continues to stroke my back for several minutes trying in vain to comfort me before getting up to fill the kettle, busying herself so that she at least feels useful. I ask for Camomile, which tastes like sweaty socks but is nevertheless soothing, and we sit side by side on the little bed sipping tea and waiting impotently for my immune system’s meltdown to end.
Three indescribable hours later in the small hours of the morning the torture finally recedes and I am left in peace albeit invisibly battered, bruised and broken. I slump down onto the mattress and Mum tucks a thin sheet around me, stifling a yawn as she kisses my hair before climbing back into her own bed and switching out the light. Exhaustion washes over me in crashing, urgent waves yet despite every molecule in my body crying out for sleep it once again abandons me, leaving me to endure yet another night of poisoned pain and sickness. For the first time I’m not scared I’ll die, I’m scared I won’t and will have to live like this forever.”