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Annual low point (a.k.a Why I have been neglecting VI)

A month between posts will not do. Sadly, as many readers here will know and understand, chronic illness can lead to periods of particularly poor health, especially in relapsing and remitting conditions.

I fear I have not really started this off correctly. I have neglected to mention my various health complaints explicitly enough. My main complaint is ME/CFS, and personally I’ve always hovered around my baseline, only deviating slightly. I may have a day or two where I don’t have a headache, or I may have a week or so when my pain is worse than usual. I don’t consider myself to have full blown relapses. In the last 12 and a half years since my diagnosis i haven’t had any relapses that have stopped me from keeping going one way or another, but then I haven’t had any remissions either. Aside from clawing my way back from the brink of death in the 4 months prior to my diagnosis I haven’t made any significant improvement in that time.

Recently I have felt that I am deteriorating. My pain is worse, my migraines more frequent. In September I was finally diagnosed with Hashimoto’s Thyroiditis, after battling various doctors for two years. Even though I am now taking medication I am still struggling. It’s around this time each year that I do experience a low point, and this has been the same for at least 10 years. This year it has not been helped by having flu earlier this month and the knowledge that I am soon to have a cornea transplant.

Don’t get me wrong. It is something I want. My vision is depressingly terrible. Having it corrected may well help to reduce my disabilities there, with the added bonus that I will perhaps stop looking so stupid so often by virtue of the fact that I will be able to see things others point out to me (spiders, dirt, my colleagues standing not 2 metres away from me); and may be able to lipread in noisy environments again, a skill necessary because of my sensorineural hearing loss. But I have to admit, I am terrified. The last few times I have had surgery I have nearly died. I know eyesight is slightly different to mass visceral organ rearrangement, but I cannot shake that feeling. I think this is also why I have not shared any more of my story at the moment – the parts coming up are the ones involving my surgeries and the massive trauma that followed them. I know it sounds dramatic, but honestly, when I do put them up you will understand why I am terrified of hospitals now, despite all my usual outward stoicism. Really I just don’t want to think about it, but I know I have to. My initial appointment to get the ball rolling was meant to be the end of next month, but it has been moved to the beginning, I feel like I have even less time to get my head around this.

And then all this thinking really only serves to drain my energy further. I definitely have a tendency to overthink things, but I do worry about pain, and recovery, and what could possibly go wrong this time. It’s me I’m talking about – things never go to plan. So it’s easier to assume something will go wrong and then be pleasantly surprised when nothing does.

I know I’ll come out of this and be my usual positive self, but sometimes it is so hard. I am mainly desperate for pain relief now – I have an appointment to assess me for Fibromyalgia on Wednesday, which if I do have it will mean that I finally get my pain taken seriously after 6 and a half years of being told I’ll only end up a junkie and to take some paracetamol instead, but it will also take the number of invisible conditions suffered by myself to seven, and I’ll be forced to accept I am not invincible all over again. But then again all this pain could just be a byproduct of my having Ehlers-Danlos Syndrome, who knows? I’ve net really had any form of medical care for it, and certainly no pain management! Perhaps I should have fought harder? I don’t know, I don’t have the energy!

Anyway, bear with me – I am working on this, albeit slowly. And I am networking as much as possible. I don’t know where it’s going, but I want to share my experience and my thoughts. It’s just often so hard to find the energy to keep things going.

Do you get annual slumps like me?  Or is your condition more stable?  Less so?  Do you get relapses and remissions?

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