Please stop it going round and round,

Like the waltzers,Ferris wheel or the merry go round .

My head hurts I’m so dizzy I’m going to throw up,

Please just stop I beg you I’ll give in and I give up.

I started thinking I’d be able to see,

All the the reasons things were happening to me.

But no …. It’s never going to happen so let me off,

You can all go away the medical profession can just f**k off.

I’ll drag myself forward, live how I can ,

But I hold so many of you accountable, for not giving a damn.

Just a name in a file known as a complex case,

You don’t read the notes or even look at my face.

I often wonder just what you went to medical school for….

Only to write me another prescription and show me the door?

I’m not happy with that as I want to get better ,

Not given lots of drugs and left for the grim reaper.

Don’t you hear me don’t you understand my words,

Do you know how fustrating it is not to be heard.

I came here today in the hope you would be different,

That you’d start from the beginning and make a note of anything significant.

Only you flick through my file just like all the rest ,

Not really interested, not doing your best.

It’s too complex lots of Drs’ involved and results to be read,

It is just so much easier to agree with what the last Dr said.

Of course I would fully accept what i’m being told,

If every consultant that saw me added his results to the mould.

So then the bigger picture truly adds up,

It’s not just horse s**t being made up…….

JQ

I feel like I’ve been in an NHS whirlpool for a long time.

I know that medicine isn’t an exact science and not every condition is going to be able to be diagnosed. It just seems though that the most basic of things aren’t being done to reach a diagnosis of a patient.

COMMUNICATION

There isn’t any between different consultants, different NHS regions and most importantly most reports of treatment or appointments don’t get back to your GP so you have nobody to coordinate your treatment or care.

If your illness requires different areas of your body to be treated then the maxillofacial consultants for example will just deal with your face and mouth they aren’t interested in the problems with your waterworks.

So you have lots of people looking at bits of the jigsaw but it feels like nobody puts it all together.

I also have relatives on my dad’s side that had leg amputations due to vascular issues with their legs . It was all missed and not really understood why as neither smoked or drank.

On my mum’s side my grandmother died in her 50’s because of heart problems and my aunty has issues with veins in her legs and migraines and neurological issues and symptoms with other family members.

It may all just be coincidental………

My daughter is going to liverpool to be tested for Ehler Danos as her shoulder pops out every day and she has loose joints.

Other children of mine have issues with their joints too.

As it drags on I’m conscious that whatever is going on could be understood better and consequently treated better.

I’m not even sure who’s in charge overall of my care? My GP didn’t have much of the stuff to coordinate.

That’s where I’m at anyway going around in circles. It’s pointless trying to get someone to look at the whole picture , I don’t think Drs work like that anymore.

I’m just going to focus on getting as strong as I can and my family too. This year I have accomplished so much . I want to find my independence in 2019 so that I can show my kids that no matter what is going on with our bodies we can still have fun . To focus on other things than the pain that we feel each day.

It’s going to be a great year !!!!