“How do you even get out of bed in the morning?”

At work on Wednesday, our student nurse had a migraine. When she felt a bit better she managed to come into the office, looking rather wan, and naturally as a fellow veteran migraine sufferer I commiserated with her, and also marvelled at her ability to come to work at all. That’s dedication for you!

Our conversation turned to health, and our senior colleague also joined in, asking how I was doing. It was the first time I’d had a chance to talk to her since my Fibromyalgia diagnosis, so I let her know about that and my three awful days on Amitriptyline. She’s another who can sympathise, she also has an invisible condition and although she manages it very effectively, she sometimes has bad days, mainly after her treatments.

I was talking to her about my eyesight, about how I need new glasses because my current lenses are two and a half years old and badly worn and scratched, but that I was reluctant to pay for my complex lenses with my transplant coming (hopefully) soon and was desperately trying to hold on. But, I explained, this meant that I wasn’t going to be able to drive to Birmingham for a job assessment/interview next week. This led into talking about said job and how I felt very conflicted over even going for it, it being so far away from my support network and a full time role made me worry about my health.

“Sorry if this sounds rude,” Piped up the student, “But what exactly is…” she trailed off and looked awkward.
“The matter with me?” I volunteered. She looked incredibly relieved, and nodded. So came the big list. That I was first diagnosed with CFS at 17, I corrected myself to add ME (working in a medical environment the term ME is frowned upon, I try to use it when talking about myself to show I do not agree with the NHS’ stance, despite working for them) and was pleasantly surprised when the look of confusion she had when I said ‘CFS’ lifted and she smiled and nodded, “Oh, ME, I’ve heard about that!” Then the Ehlers-Danlos Syndrome, not diagnosed until I was 22, but explained my incredibly complex medical history. My eye condition, re-diagnosed in August and why it entailed a transplant. Hashimoto’s Thyroiditis, diagnosed in September, and last but not least, Fibromyalgia diagnosed just last week after a long battle. Thinking about it, in the last 3 months I’ve had 3 new conditions diagnosed. I hope this is more of the ‘like buses’ analogy, rather than setting a new trend for me – What’s it gonna be this month?!

“Wow,” she said, “How do you even get out of bed in the morning?”
“We often ask her that,” Our senior colleague contributed.

To be honest, I try not to think about it. It’s probably something to do with the influence of my parents – I always used to joke that my Dad could have a limb hanging off and he’d call it a scratch, put a plaster on and go to work. When I was 10 he developed autoimmune Sarcoidosis and was horrendously unwell for seven years, but he kept going, he worked, did DIY, raised his children. It’s only from talking to him since my own health deteriorated (funnily enough at the same time as his improved) that I realised just how ill he really was. He never let on. He was always just my Dad to me. Sure, he lost some weight, and he coughed a lot and complained of sore joints, but I do not recall him ever once taking to his bed, even for a day,

I can’t live up to that, of course, and I don’t believe that anyone should feel that they have to. It’s a personal choice. My Dad retired in March 2008 only to get a new job by the April! That’s who he is. My Mum was diagnosed with Hypothyroidism in 2000. When she was diagnosed she worked a little part time job as an administrator. She could have easily stuck with that, but instead she changed jobs and worked he way up to a management position. They’ve both been hugely inspirational for me.

They’ve never pushed me in any way, but I guess it’s in the genes. For all my limitations I am still hugely ambitious. What little ability I have left I put to as much use as possible, often overdoing it. I should be better at pacing by now, but I really do want it all. It makes me a very antisocial person at times – the main reason I still work is because it IS my social life. I don’t have the energy for out of work friendships. Making good use of my unlimited text messages from my sofa or bed is my social activity outside of work most days.

I don’t like having to get up early when my sleep is always so disrupted, or that James’ nursery fees are more than I earn in a month, simply so I can go to work and not earn enough to pay them. But whilst I still have a choice, I’m choosing. Many have no choice. I’m choosing to go to Birmingham, to fight for this job, just to see how far I can go. If by some stroke of luck I was offered it, although it’s my dream job, I think I would walk away. At this point in my life, just knowing I could do it if I were able to work full time would be enough for me

I get up in the morning because I still largely hide my illnesses. There were three of us having that conversation who all experienced debilitating invisible conditions which we hide in one way or another. We were in a safe space, there was no judgement, only understanding. We shared and listened, and for 20 minutes, we were visible to each other.

When asked how I get out of bed I realised my answer to that has always been to shrug and smile and dismiss it. What a Good Cripple I am. The truth is, some days I don’t know how I do it. Some days I do it by pitching myself out of my bed onto the floor to shock myself enough to get moving. Once I’m moving, had a cup of tea, stood under a scalding shower for 20 minutes to loosen my muscles a little, I’m a bit better, but it is still a mystery to me how I do it. I know it seems from this blog that I never stop talking about my health, but by always carrying on, not complaining, not wanting people to feel uncomfortable, never asking for my needs to be met in my daily life, I am buying into that Good Cripple construct. I’m still being invisible.

So when the student said, “I’m sorry for being nosey. Do you mind talking about this?” My answer was “I don’t mind, the more people that understand that illness is not always visible the better.” It gave me the warm fuzzies just saying it. I don’t mind. If people are willing to listen, to try to understand, then I’m ready to be honest.

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