The comings and goings of Kara Jane Spencer

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My year with M.E - Let’s get real people

A friend from my support group said, ‘Kara, what a year you have had.’ I didn’t even think about it until she said that, but actually when I add it all up, it is insane:

Moderate to severe.
Wheelchair bound to bed bound.
Transferred to hoisted.
Able to sit up to now full time laying down.
Part time care to almost full time care.
Problems with cardiac function, blood pressure and tachycardia.
Bladder dysfunction that almost led to rupture, meaning now permanently catheterised.
Severe kidney infection lead to sepsis, kidneys went into failure, they’ve recovered but been left with suspected kidney disease.
Eating fine to swallowing difficulties, to severe muscle waste and swallowing impossibilities, to having to consider peg feeds.

That’s heart, bladder, kidneys, oseophegus and bowel that all are now affected. It’s only when you add it up like that that you really realise! And it’s a flipping insult to my suffering that Drs sometimes call M.E, Chronic Fatigue Syndrome. Yeah, cos Im only tired, nothing else wrong!? Are you flipping joking? How can they call a disease that has affected all of my organs and is slowly killing me Fatiuge Syndrome as if I like to nap? It’s quite the opposite actually, I am exhausted but I cannot sleep at all because I’m in such crippling pain, even with morphine.

Asside from that, the above list of this years deterioration isn’t taking into account the more ‘minor’ things like chronic infections, and major new symptoms such as seizures and severe hypersensitivity and increases ten fold in daily pain.

I’m not looking at this going oh poor me, because I’ve not given it a thought til now, I’m looking at this going, for how much longer are they going to deny M.E exists? Sarcasm aside, how can any sane minded person believe or rationalise that someone could make all this up? Even if people were sceptical about M.E, this is stuff you can’t possibly exaggerate or fake. If anything should prove the reality of M.E to people it is surely cases like this. With the way things are looking, I’m pretty much set to go the same way as my fellow M.E sufferers Lynn and Emily in this article, unless there is a miracle of course. How many more will it take before attitudes change? Do me a favour, just share my story and my years deterioration with someone, maybe two or more people if you will. Not for the poor girl thing, but for the raising awareness thing. Because i don’t want the next generation of M.E sufferers to go through the same disbelief and neglect that I have. Anyone can develop M.E, no one is safe from it. If you developed it and went through all this, and you would want better treatment, then please share my sorry, please share this article. Things need to change. But it’s already too late for some.

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