“Sounds like you have fibromyalgia”, says the doctor brightly. “Have you heard of fibromyalgia?”
“Yes” I respond, my inane grin shocked into place.
“Here are some print-outs on Chronic Fatigue Syndrome for you to take with you, you have that too”.
I’m not really sure why I was so shocked. I’ve been suffering a random range of symptoms for a long time now. The ever present insomnia. Depression. Mood swings. Headaches. Periods from hell. Aching joints. Sensitivity to light, sound, smell. A crushing lack of energy – a body and mind that let you down on a daily basis, making you feel as though you’re wading through treacle – words you can’t find during the course of a conversation, the attention span of an anemic mosquito, virtually no short term memory recall (Something I used to call Early Onset Sporadic Dementia as a joke, but it doesn’t seem all that funny now).
Even getting a full night’s sleep leaves me feeling exhausted. It’s unbelievably disheartening to wake up from what you thought was a good night’s sleep, only to realise that you feel just as tired upon waking as you did upon resting your head on the pillow a few hours ago. It makes the daily grind even more of a grind, dragging myself through life like some sort of soporific non-cannibalistic zombie. I’m snappy. I’m low. Really low. I’ve stopped looking forward to my morning walks with Roxie, because I hate having to force myself to put one foot in front of the other when I’d rather be curled up in bed.
I’m snappy. I’m low. Really low. I’ve stopped looking forward to my morning walks with Roxie, because I hate having to force myself to put one foot in front of the other when I’d rather be curled up in bed. Actually, I’ve stopped looking forward to pretty much everything.
Energy is something many of us take for granted, because for most of us it’s just there, something to be used without too much thought of it being finite – yes, we might feel tired at the end of the day and look forward to climbing into bed, or have a bit of an afternoon slump, but this kind of empty tiredness I’m feeling – it’s different. It takes energy to do everything. It takes energy to find restraint when you find yourself wanting to be snappy. It takes energy to employ willpower when you’re on a health kick and someone offers you a donut. It takes energy to find enjoyment and gratitude during the day. It takes energy to cook. To look after yourself. To put makeup on and do your hair. To care, about anything and anyone. And right now, I’ve run out of energy – I feel as if I’m running on fumes, and always feel as though I just need to coax a few more miles out of the tank before it conks out on me completely.
At the moment I feel like there’s a lag time built into everything I do – I look around and it takes my eyeballs a few seconds to catch up with the direction my head is moving – all of my reactions are dulled, mentally and physically.
Because my reserves are so low, I just don’t have any enthusiasm. For anything really. I’ll go through the motions, but all I want to do is go to bed. Right now, I’m slumped across the desk, half asleep, but feeling like I need to write in order to attain some level of catharsis, to reach out to someone who understands – I’m not going mad, I’m not a fat, lazy, unmotivated hypochondriac – I’m not well. I am sick. I don’t enjoy feeling like a passive participant in my life, some empty echo of the person I once was – like a puppet that’s had its strings cut, never fully being able to engage because your strings are all tangled. It’s a bit like when you know your phone battery has run down to about 20%, and you have to decide when to switch it on and what to use it for. Of course I have good days, days when I feel a bit more like my usual self – I almost feel like these days are just there to mock me and remind me how shit I feel the rest of the time – I’m so mired in how tired usually feel, I can’t just be grateful for the finite fleeting fizz of energy I have.
If you’ve stuck with this post so far, well done – I’ve probably repeated myself often, did I mention my attention span and short term memory issues? I’ve no idea what I’ll get out of writing this self-indulgent diatribe, no idea why I’ve written it. I guess as a way of convincing myself not to give up and just go to bed – to keep fighting, because, for fucks sake, I do not want to feel like this for the rest of my life! And I am utterly relieved, to the point of tears, to finally have some sort of recognition from the GP regarding how I feel, that alone has made me feel more human – because going to the doctor repeatedly, only to be told to pull yourself together, is utterly dehumanising. If only I could bloody pull myself together! Do they think I want to feel like this? Actually, scratch that. I do pull myself together. Every day, I drag my arse out of bed, I shower, I get dressed, I walk the dog, I go to work, I do my best to be as present as possible – regardless of my non-existent attention span – every damn day, regardless of how achy and exhausted I am.
So, screw you, fibromyalgia and CFS. You can both go and do one. I’m off to read up on how to reactivate my knackered mitochondria and claim my life back. And to have a nap….
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