Wednesday, 26 October 2016

Invisibility hurts

I was inspired to start writing this blog because of the utterly overwhelming response I received to a recent facebook post (see below).  

In all honesty I wrote that because I was fuming and upset.  I just had to vent. I truly had no idea the emotional impact it would have.  I cried when I read your replies.  I think I had allowed myself to believe that I had become invisible and no longer mattered.
So here is the post that started it all......

After a weekend of being unable to walk.....
I wish I could say I made the right decision going to A&E. Not so.

**It's a long post. Fair warning. **

As some of you may know my quality of life has taken a nose dive over the last few months. For the past 4 months now I tend to only leave the house for hospital or doctors visits.
I put up with A LOT of pain. Trying this combination of pills, then the next.
The ones recommended by my pain consultant are not covered by the medical card and cost hundreds a month. In fact I think the chemist was quoted €1000 for one of them.
I've been turned down for hardship funding twice now.
So I go without. Relying on pain killers. Trying with all my might to avoid opiates (morphine).

I struggle on. Staying in bed most days. It takes an awful lot for me to admit I can't take it any more. I avoided going to A&E all weekend as I knew in my heart how those with chronic pain get treated. I was in bed. Crawling to bathroom. Unable to walk.

I held out hope though. When I hobbled into my GP yesterday. Barely able to put weight on my left leg. Unable to use crutches due to wrist pain. No wheelchair, sure how can Brian push 2 of us? I couldn't push myself anyway.

She took one look at me and said I needed a few days in hospital for pain control and a regime put in place that might actually for me.

So I went. Letter in hand.

I sent the boys home. I knew I would wait. But not prepared for the reality of what it would do to my poor body.
It was freezing and drafty. The chairs hard wood.

I ended up spending 5 hours sitting in A&E waiting room. I was stoic for a couple of them. Keeping my mask in place. I don't usually let people see the real suffering. By the 3rd hour I was crying in agony. I could not walk to get attention.

When staff did come out they looked at me crying and said nothing. I'm so ashamed of my former colleagues. I would NEVER have ignored someone in agony. I fully understand the pressures of the ED. I have worked there. However, I am proud to say I never ignored someone who was suffering. If I was too busy I went back or asked a colleague to.
I can't imagine this would have happened if I'd gone to my local hospital.
The reason I didn't was to access rheumatology and pain services. Pah!

The honest truth is I ended up calling Brian to get me as the pain after the 5hours and the sitting and cold had caused my muscles to spasm. Not forgetting my original pain of course. Inhumane is a word that springs to mind.

I got home to my own bed. Made my own decisions on my medication (not something I advocate but I do have a lot of experience and knowledge to draw on) I actually slept.
I am now covered with heat pads. Waiting on Brian to tip me into a bath.
My order of CBD (cannabinoid), that I saved for, arrived just now.
Omg such joy!! It might bring me out of spasm.

The pain is still there. Friends are telling me to go back.
I'm scared. That's the honest truth. I'm still debating.......

I truly feel for all my fellow chronic pain sufferers who fall between "majors" and minors"

Love and gentle hugs to all

If you got this far. Thank you.
If you want to share my story please feel free.
Let's hope something changes so that those in such pain are not invisible any more.


Please see my GoFundMe link below, give if you can, any little helps xxx 

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