A novel experience: part 5

By the time I developed M.E. I’d had a couple of regular allergic reactions to drugs.  The first to anaesthetic and the second to an anti-sickness injection.  These were well recognized reactions, if rare, and very different to the weird reactions I’d go on to develop as part of my mast cell disease.

Most Doctors only recognise full on anaphylactic shock, where your throat swells and you have problems breathing, but anaphylaxis can be graded from 1 to 5 (or I to IV depending on the Grading system used) and as my mast cell disease progressed I started having grade 3 anaphylaxis to just about every drug or supplement I put in my mouth.

My very first mast cell reaction back in 1994 was to alcohol, though I didn’t know it was an anaphylactic reaction at the time.  My second reaction was to a supplement and this time I was fully aware my body was in meltdown though of course didn’t know why.  My Mum, who we are now almost certain has both EDS and MCAD, had quite often reacted badly to drugs so to me it was fairly normal and I really didn’t think much of it.

This exert from my book describes this first serious mast cell reaction.  I’d had ME for about 12 months at this stage and was having awful problems sleeping.  My GP wouldn’t prescribe anything as she said sleeping tablets were addictive, so I thought I’d try something natural.  After all, what harm could it do?

“I swallow the little white pill I’d bought at the Health shop, wincing as it makes its way past my swollen tonsils, the result of yet another throat infection.  The tablet contains something called GABA, which is apparently made naturally by the brain and I’d read in a magazine can cure insomnia.  I’d eat rat poison if I thought it would help and as I pull my sleep mask over my eyes and push in my earplugs, shutting out all external stimulation, I offer up a silent prayer for seven hours of heavenly uninterrupted kip.

Twenty minutes later far from being in the land of nod I’m starting to feel a bit peculiar.  My whole body is tingling and I feel hot, ridiculously hot, so with an irritated sigh I sit up and turn on the bedside lamp, crawling forward on the bed so I can see myself in the dressing table mirror.  I’m shocked to find an ashen face with flaming cheeks staring back at me and I can see my chest inside my pyjama top is mottled scarlet red.  Hmmmm.    My sleepy brain is just starting to register that something’s not quite right when every nerve in my body explodes with pain, pricking my skin with a thousand razor sharp needles.

Owwwa!  What the hell?!  I’m wide awake now and more annoyed than worried, realizing my chances of some shut eye are diminishing by the second, but as I try to exhale my frustration I’m kicked in the chest by an imaginary horse, the thump of its hooves a physical blow which steals every ounce of air in my lungs.   The sensation is so real I slump over, my heart suddenly pounding ferocious beats which thud in my ears and all the while I get hotter and hotter until fire reaches my brain, a raging inferno which melts everything in its path.

Conscious thought is lost to the blaze and I hug my head protectively with my pyjama clad arms, rocking back and forwards to soothe the onslaught.  I’m obviously having a bad reaction to the GABA but it’s nothing like the allergic reactions I’ve had to anti-sickness drugs, which made my eyes roll in my head, or the reaction I had after my spinal surgery as a kid which caused my muscles to spasm so violently my back arched inches off the bed.  No, this is something new and I have no idea what’s happening.

I’m weirdly calm yet antsy with a sudden unstoppable urge to move, despite the fact my body is heavy with fatigue, so I start pacing the length of my bedroom, my heart battering against my ribcage, pain tunnelling along every nerve with each thudding step.  I’m not liking this God I tell my invisible Mentor, not liking it one little bit.  In fact, I’m freaking out so if you feel like a bit of Divine Intervention now would be a really good time.  God’s answer is to make me abruptly nauseous and I only just reach the bathroom before vomiting so violently I’m worried my stomach will rupture.

Three hours later I’m still pacing, a rhythmic voyage round the bed and back keeping my adrenalin fuelled body occupied while my heart does the equivalent of a sprint hurdle, my trudge broken only by the need to retch stringy bile into the toilet bowl.  Please make it go away God I beg.  I’m so tired, so very very tired and my tummy hurts.  My knees buckle and I stumble but despite overwhelming exhaustion I keep moving because when I stop the fire in my veins is so intense I don’t know if I can bear it.  It doesn’t cross my mind to dial 999 because it’s the middle of the night and anyway I hate hospitals and would only want to go to one if I were dying.  Which I’m not.  At least, I don’t think I am.  Corpses have to lie down and be dead and I’m far too wired to be that still.

I shiver uncontrollably, fat goose bumps lifting the hairs on my arms, but when I catch a glimpse of myself in the mirror my face is still alight with burning heat.  I wrap my arms round my ribcage, hugging myself for both warmth and comfort, then try some of the breathing the hypnotist taught me, in through my nose and out through my mouth, in a vain attempt to quieten my thudding heart.  It doesn’t work and I become so out of breath I see stars.

‘For crying out fucking loud!’ I stamp my foot hard on the laminate floor, angry that everything I try only seems to make things worse, then instantly regret my strop as searing pains shoot up my leg, sending shock waves rippling up my spine.  ‘And you can piss off as well!’ I tell the pain petulantly.

Indeterminable hours of pacing and puking later, as the streetlights are replaced by weak winter sunshine, the fire in my brain finally dies to glowing embers and my heart, after one final thumping finale, settles into its usual quiet, steady rhythm like nothing has ever happened.  Not quite trusting that the reaction might finally be over I sit tentatively on the edge of the bed waiting for my nervous system to complain, but although every inch of my skin is tingling like it’s plugged into the electric the sensation is just uncomfortable rather than agonizing.  Relief and crushing exhaustion suck the last ounce of strength from my muscles and I crawl gratefully between the sheets, my brain singed, my stomach raw, blissfully unaware I’d just had the first skirmish in a twenty year war with my immune system which would ultimately try its best to kill me.”



3 thoughts on “A novel experience: part 5

  1. Laetitia Lalila

    Dear Jak, I was so impressed by your anaphilaxis story, it was so well described, so vivid and authentic. I had a similar episode, but only once. I feel deeply sad that you had to experience this, and so many times over the course of the years. Did I tell you that you are my superhero? You are my superhero! I always think of you on those lonely, painful, seemingly endless nights. I say to myself: “If Jak could go through it, I can, too!” 😀
    Wishing you calm days and paceful nights,

    Liked by 1 person


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