Sunday, 29 January 2017

The story continues

As some of you may know 3 weeks ago I was forced to visit ED again thanks to the pain associated with my Fibromyalgia (blog title Third time unlucky).

I've been in touch with the minister for health Simon Harris before and I've just sent him another email, I will not go quietly, will not suffer in silence.

"Dear Simon

Yet another unsuccessful ED visit left me quite literally at breaking point. 

I received atrocious treatment from a senior nurse who deigned to comment on me in my wheelchair. 

Asking me what I was doing in the chair, could I not walk, after saying "no not really" her response was "well how did you get in the chair". This is absolutely DISGUSTING treatment of any person in a wheelchair, at the time though I said nothing and justified myself to her. 

This however, is not why I am writing today. I will get dates etc and be in touch re an official complaint. By the way I've heard nothing from Tallaght hospital....

You may recall I was waiting on Rheumatology and Pain clinic appointment's. 

I saw Rheumatology assessment physio in December. At this point I was referred to Our Lady's Hospice in Harold's Cross for their programme. 

Following my disastrous last visit to SVUH my partner got on the phone and basically begged for my assessment to be done as an emergency. Finally we were taken seriously! My ED visit was Monday and I was seen in OLH on the Wednesday. 

I was finally acknowledged for my condition and was admitted as an emergency the following week. 

I am at the end of my second week as an inpatient and will be back next week for a third. I count myself as lucky to have accessed this service. Many people in similar situations are not as lucky. 

This brings me to my reason for writing. 

I've been following the progress of the Medical marijuana bill avidly. I strongly believe that this needs to be made available for those of us with specific conditions. 

However, it is not as simple as that. I MUST be available on the Medical card. If not, yet again, those of us who need it most will not be able to access it. History will repeat itself like with the Nabilone. 

I'm doing lots of research into the benefits of cbd and am in contact with suppliers from the uk. I am also part of a team of users who are starting a consumer group for users of CBD. 

I would appreciate your feedback with regards to whether we are looking at CBD or a full spectrum product (some people should actually avoid THC), and whether you plan for this to be on GMS. I do plan to reach out to Vera in the meantime too."


Tomorrow I'll be back in for week 3 away from my boys, the fight is real and unrelenting.

Please support those of us with invisible illnesses. Share share share!!

Gentle hugs and much love to all 💜💜💜💜

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