Friday, 11 May 2018

Don't Call The Doctor!

As some of you will know, I've had Myalgic Encephalomyelitis (M.E) for 28yrs, M.E is a chronic complex physical debilitating illness. I also have other stuff like Fibromyalgia, Osteoporosis, Scoliosis,  hunchback, yada yada...apart from that, as most would say " I'm fine ". 


On Sunday 22nd April  2018 I began having breathing problems, it's common with my conditions and impossible to pinpoint what causes what exactly. The muscular weakness seems to lead to inflammation and spasms where the back and chest feel like concrete and there's an inability to take a full breath and then due to the exhaustion it all becomes rather distressing. 

I'm usually able to ride this out 
but it became worse as the day went on and by the evening, with raging pins and needles shooting up my spine like fire and spreading throughout my body I asked my mother to call an ambulance. I was also at a bad level of M.E at this point, trouble with processing thoughts and words slurring.

When the medics arrived they seemed rather hacked off that I wasn't on my last gasp and I felt the urge to apologize for being conscious. As it was explained to them I had M.E, there were huffs, puffs, eye rolling and general irritation.

As my mother later said "They made me feel like sh*t"  
"Yes mother, welcome to the world of M.E Sufferers"




Travelling in the back of an ambulance is the last place you want to be when you have M.E, the suspension makes it feel like you're being thrown around in a tumble dryer,  add in the bright ceiling lights and you're on the highway to hell.
At the hospital, Pablo (not his real name) introduced himself as my support nurse and announced he needed to take some blood. He began  tapping here there and everywhere looking for an appropriate vein to stick his needle: 


Me: Well I just hope your good at taking blood Pablo?

Pablo: No, 

(Did my foggy  disorientated head hear right?) 


Me: Sorry Pablo, did you just say you were no good at taking blood? 

Pablo: Yes. 

At this point, he twists my wrist, pulls it downwards and says he's  going to take it from the side if that's okay with me? 


Me: Pablo, you can take it where you want, as long as you don't hur.......AHHHHHHHHHHHHHHHH! 


I can confirm Pablo is no good at taking blood.



This is followed by an ECG and a chest Xray, thankfully not by Pablo, but the porter that wheels the bed to various bays & rooms obviously thinks we're taking part in Robot Wars, and his determined to take out anything that gets in our way, CRASH!, BANG! WALLOP!  I'm laid on my back, with one hand gripping the metal sidebar with white knuckles and the other trying to cover sensitive eyes from the bright ceiling lights speeding passed quicker than a Virgin media broadband connection. 

All done, and back in the bay I can't help but notice I have pants older than the doctor that has just entered. She leans on the beds' sidebars, turns her head to one side and looks at me patronisingly before announcing that everything is clear, so what would I like her to do? 

Before I respond to that question, I'm trying to explain the reason for my slow thought process and slurred speech...but it's...er?...slow.....& slurred, She's nodding, but I'm not sure if it's in acknowledgement or she's just nodding off because she's not even looking at me. She asks if I might just be having a bad M.E day?  in which case, there's still nothing they can do for me. 

"JUST having a bad M.E day" ?

she continues to look perplexed, and shrugs as her eyes wander off around the ward again.

I realise as per these 28 yrs, when it comes to GP's & Hospitals I'm not going to get anywhere.  When you have M.E,  you're viewed in the same way a dog views a lamp post.  
As it's M.E awareness month  I would ask those of you blessed with good health to imagine the following over numerous decades: You're feeling ill so you turn to a doctor? The hospital? But instead of helping you they bully you & try to brainwash you into believing you have a mental illness until you actually start to believe you are going crazy?   An ignorant media then spread those lies and the public swallow it? You lose your job, your social life, family members, friends?  

While standing your ground that you are suffering from a physical illness, refusing to play along puts you at risk of being forcibly removed from your home and locked up in a psychiatric unit and denied any visits from family and friends? You're also labelled a time- waster and treated accordingly.  Society treats you with such prejudice and disdain you're frightened to leave the house? 

Imagine feeling as though you are living in the dark ages? The very people that are supposedly there to help you, treat you like a criminal, punish you? Force you to exercise until you collapse and die?  Give you addictive medication that damages your body & health further? Yes, Welcome to the world of M.E indeed. 

M.E sufferers have and continue to be treated appallingly. It would take a novel to explain just how bad and maybe that's something I will do? 

Just the other day another friend and fellow M.E sufferer, having waited  3yrs for an appointment to see a rheumatologist was told all her pain was in her soul because she was probably too nice? 

Even though M.E has been listed as a neurological disorder by the world health organisation since 1969, the ignorance and prejudice has been shocking &  in many cases continues. Thankfully now the public, in general, are a lot savvier and clued up to the realities of M.E but sadly the medical profession are very much behind.  With Charities like Invest In M.E Research progress is being made, but we can't afford to let up, future generations depend on it.

 Remember, it was only in the 80's epilepsy was finally accepted as a physical illness, up til then sufferers were often deemed possessed and with mental illness and permanently sectioned. I personally knew a lady whose daughter was a victim of those times,  her mother went to her death full of guilt. Before the term Menopausal symptoms, women were branded as crazy and hysterical? 

While I'm well aware the medical profession is very ABC textbook operated, it should be obvious by now that life isn't like that, but Lessons aren't being learnt. Just because a new illness comes along that can't be visibly seen or shows up anything in basic tests, it doesn't necessarily mean that it's psychologically based, we've seen proof of that decade after decade and yet the same lazy ass route is taken every time.  Enough is enough, surely it's time the profession changed mindset?
   
Back to Watford Hospital, As my neighbour & her son kindly went to get the car to take me home and I shuffled to the exit in my PJ's, the doctor called out: "If you feel ill or have trouble breathing, come back"  ...???????????????

Yes, I'll just leave that out there for you to ponder on? 


 If you'd like to show your support for Invest In M.E Research every penny no matter how small is appreciated. The charity is run entirely by Volunteers, so they take no wages, your money goes where it should go, making a difference. Thank you, 

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