For the last year, I hadn’t been feeling so great.
I was tired (‘of course you are, you work full time, and part time, and have kids’ they said).
Not just tired, but bone-achingly, sleep-at-the-drop-of-a-hat, nodding off in the supermarket queue or wakingupseveralstopspastmyactualstoponthetubetrainexhausted kind of tired.
I was sore (‘well what do you expect, you have Ehlers Danlos Syndrome (EDS)’ they said).
My body ached when I woke up, and ached when I walked, and ached when I sat still too. My hands throbbed, my elbows fired needles of pain as I moved my arms, and my hips, knees and ankles were replaced with tight-knit balls of fire. I couldn’t walk in the morning. I needed help to get dressed more than usual. I’d tell my body to do something and the something just wouldn’t work.
I was confused, and forgetful (‘it’s just baby brain, it happens to everyone’ they said)
And I looked blankly at people I’d – apparently – met only days previously, and received angry texts detailing missed appointments, and sat staring in meetings as my brain refused to find the words it had known only seconds before.
I was covered in hives (‘it happens, it’ll pass’ they said)
Thing is, time passes slowly, agonisingly, when your body is becoming one big nerve-ending-screamingly ball of raised red itch, seemingly unresponsive to antihistamines and only slightly calmed by lying around in lukewarm baths. I am not averse to taking a lot of baths but it’s difficult to combine that with life.
I was cold (that’ll be the Raynauds’ they said)
But you know, I know what that cold is. And this was colder still.
I was busting out of my trousers (‘too much chocolate, too many chips’ they said)
It’s true, I do eat chocolate. But I ate it before and my trousers still fit…ok well mostly they did. Christmas is always interesting!
And then, ten months after I first made my way to the doctor and said
‘I think something is not quite right’
I sat at work, and forgot a meeting I had just been told to go to.
‘Are you coming?’ they said, and ‘yes’ I said. And then I just forgot to go.
They came and got me, and I was late (and cold, so I wore my coat which is really not done, in meetings so I’m told – it suggests that there is somewhere else you’d rather be), and then my calendar told me that [I had forgotten] I needed to pick the kids up from school. So then I left the meeting and I collected the kids instead.
I thought I was going mad.
My job was in jeopardy. My body was in jeopardy. My whole life was in jeopardy. I was told I was lazy, I was doing too much. I was a Mum, and Mum’s forget things. I need to exercise, I need to lose weight, I need to not put too much weight on my joints, I need to just GET ON WITH IT.
Then finally, luckily, the week of that wrongly remembered meeting, my blood told the truth. The blood tests that no-one had bothered to do before because THEY SAID it was just me, being me.
‘You have autoimmune hypothyroidism’ the consultant said, as he looked at me kindly, and handed me a prescription for a tiny white pill. ‘These will help you to start to feel better. And as long as you keep taking them, and take them for the rest of your life, you should feel back to your normal self’. He spoke of adjusting doses, and the need to avoid too much thyroxine, and the potential ‘too much’ side effects of sweating, palpitations, headaches and strokes.
I picked up those pills from the pharmacy. I laid the packet in my hand. And I was scared.
What if this isn’t the answer? What if they’ve got it wrong?
I felt like a fraud. I still do feel like a fraud.
For so long I’ve been told that it’s just me, it’s just who I am, it’s all to be expected because
and the ever present EDS
that it kind of seems unreal that there is actually a reason for the way I’ve been feeling, for all of 2016. When you’re told something so often, you actually start believing it. The fact that there was a reason for everything I’d been experiencing seemed more unreal than the fact that it is not normal to be completely exhausted, permanently tired, in pain, forgetful and confused, cold and covered in hives. Kids, work and laziness don’t cause those things. Ehlers Danlos Syndrome does cause some of those things. But I’ve had that all my life, and I know – I knew, I think? – what is normal for me and EDS, and what’s not. Just because you already have one chronic illness, it doesn’t mean you can’t have another. The slow and gradual onset of symptoms and the constant explaining-away has meant that there is such a gap between the before and the now, that life without an underactive thyroid feels like it never even existed at all.
So I stared at that one tiny white pill and I imagined myself lying there on the floor, shaking and sweating, tight bands of pain racing around my skull, as ‘they’ said ‘I told you so, it’s just because you’re you. You don’t need that thyroxine after all’.
I stared at that tiny white pill, and imagined a life sentence of reliance on prescriptions and pharmacy visits, keeping me back to whatever ‘normal’ actually is.
It’s been so long, I don’t even remember what ‘normal’ feels like.
But in the end (after two days of staring) I took that tiny white pill and slipped it into my mouth. I admitted to myself that perhaps ‘they’ weren’t right all along, after all. (And then I sat and waited for the headaches, the sweating and the shakes to begin).
I took that tiny white pill, and I started the first day of the rest of my life.