Growing up my health has never exactly been fantastic. In fact I honestly cannot remember a time in my life when I haven’t been perpetually exhausted and in pain. For many years I believed that was just how things are, I was simply weak for not being able to cope like everyone else.

Then, in my mid twenties, my health took a real nosedive. I suddenly became unable to work, or even continue with my day to day life. Luckily, I had the tests needed to make a relatively swift diagnosis. I then fought to be referred to the POTS clinic in Sheffield where I’ve been looked after ever since. You see, I have POTS which caused me to collapse more than 17 times a day. This, I learned, is secondary to my EDS; which is a disorder that affects all my collagen. The building blocks of the human body.

The years rolled by and a few more diagnosis were added. I had a hysterectomy and also an ileostomy to try to improve my quality of life. They helped. The medications helped. But still I had issues which just didn’t make sense, that do not fit in my current list of diagnosis. These issues continue to worsen.

My head feels too heavy for my body, I always have pain at the base of my skull and down into my neck. I get numbness and tingling in various parts of my body and my large bowel just doesn’t function. My bladder doesn’t speak to me anymore, so I can hardly feel when it’s full. I slur my words after being upright for long periods of time and also start to twitch and tremor. My clumsiness is almost world renowned! Days and weeks will pass by where I’m bed bound from dizziness, my world tilting and shifting on itself if I even attempt to sit up. The list goes on and on.

I went to my GP with these problems. He scoffed at me when I told him I thought they were all somehow linked. My neurologist told me I had FND, basically I was manifesting stress as physical symptoms. But I wasn’t stressed! Basically I just had to plod on as things worsened and more and more of my time was spent horizontally, the only way I feel semi human.

Then my neurologist retired. My new doctor told me he is certain there is a ‘real’ issue. He just doesn’t know what. Around the same time someone in a support group told me to look into Craniocervical Instability. Dubiously I googled the condition. As I read, my mouth dropped open. It literally described everything I’ve been going through. My Neurologist agreed it was a definite likelihood, so did my POTS team. GREAT! So I’ll just get tested...

Unfortunately it’s not that simple. Because my health issues are so rare and complex there are very few doctors available who are able to diagnose and treat the issue. The upright MRI needed is also very rarely funded on the NHS, if at all. If I am to get the correct help, I need to fund it myself. My POTS nurse told me I need to do this, she told me to crowdfund and make the appointments.

Why the rush? Well, currently I can still get up and about. Spend time with my children and attempt to live a ‘normal’ life, even if I am only up for around four hours a day. But this problem will only continue to get worse. Eventually leaving me bed bound, or worse. There are surgical options to help, but only in the early stages can the surgical treatments reverse symptoms. There comes a point when surgery will only stop things worsening rather than make things better. I don’t want to be bed bound and completely miss out on my children’s lives. I need to get this issue sorted.

So here I am. Asking for help. The total is to cover a private appointment with a specialist in CCI, also an upright MRI and travel and lodging in London. (I cannot get there and back in the same day. I’d end up hospitalised.) Hopefully I’ll then be able to get any treatment needed here in the UK on the NHS.

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