Me and My Disability: Chronic pain flare up

Dear blog,

I’m so sick and tired of being sick and tired. I’m on day three of a chronic pain flare and what’s pissing me off is that I’ve been putting up with this for SEVEN YEARS and nobody wants or knows how to fix it.

I have five hours today with my best friend Mel and we should be doing Christmas cookie baking, going for a drive, lunch out, you know normal stuff but, I’m confined to my arm chair in yesterday’s pjs off my face on oramorph and in agony and I’ve got Mel running errands that I should be doing with her.

I have a burning sensation in my back and a tightening in my pelvis (especially my left side) and yet my x rays or MRI’s show nothing to be concerned about and yes, I’m grateful but at the same time it makes my stomach flip because nobody knows what to do.

How can doctors let this problem go on for seven years?! It’s not the life I want. I swear to god if the pain clinic mentions physiotherapy I may scream – IT DOES NOT WORK.

By now I should have moved out, got my university degree and a good job but, no. I’m having to rely on my parents for help where as it should be the other way round.

I’m grateful to the NHS because without them all my meds would leave me bankrupt and I have received some of the best treatment but also the worst.

Somebody out there is missing something I know it. Yes, I have depression but it doesn’t mean that this pain is all in my head or that I want a diagnosis for attention.

I just want to live; have a steady relationship, climb the career ladder, see the world. I’m not saying my life is all doom and gloom because I’ve been really lucky. I have loving parents, I’ve had academic opportunities, I’ve travelled and been to concerts. I’ve also made some very special internet friends due to having a chronic illness.

My life is hard. It’s not easy having to rely on someone all the time and little dignity. People think it’s easy because I have people that do things for me and I am so grateful but, I wish I could do those things myself.

I am certainly fed up of feeling like constant crap and all the waiting lists. I’m not the most patient woman.

So having days like these are very fustrating! But I Know I’m not alone and I take some comfort in that.

Come on! Somebody please develop a new treatment or drug! I’ve lived like this for seven years I don’t want to waste anymore time being ill.

I will not stop fighting until my voice is heard. I believe that things in life happen for a reason and my purpose is to raise awareness of the struggles of having a disability and undiagnosed chronic pain with no source or explanation as to why this happened.

I would love a cure but right now I’ll settle for any improvement. I also need to work on being kinder to myself and be grateful for a body that’s trying to live up to is expectations and not firing on all cylinders.

Lots of love and support,

RM x

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