Saturday 5 May 2018

PAIN IN MY SOUL. Groundhog day as an ME patient

A graphic account by M.E. patient Camilla Cruise of the reality of dealing with the HSE.

Camilla Cruise at last year's Millions Missing Protest in Dublin

Warning by Camilla: very irate Myalgic Encephalomyelitis patient and some strong language maybe have been used. 

Yesterday I waited over 3 hours to see a rheumatologist in Beaumont hospital Dublin. 
I've waited over 3 yrs in constant increasing  pain to see this team also.
This was my second appointment. I had already privately had confirmed through MRI osteoarthritis of my lower spine and also degenerative discs. I also have a subcondrial Bone cyst (that is likely causing impingement ). 
The bone cyst is normally a sign of osteoarthritis in the hip also starting to develop. I have visibly constant swollen knees despite two diff anti-inflammatory.  
Those are undeniable.
I have much other issues with pain and muscle weakness and lactic acid burn, muscle spasms, restless leg etc etc but the above is indisputable. 

Yesterday I had a qualified doctor on the rheumatology team tell me my PAIN IS IN MY SOUL. 

That I'm probably too nice for the world and take all this stuff from out there and take it in on myself...
So basically my pain is psychological!!!!!! 
This is the absolute BS myself and many other ME patients have to put up with constantly when trying to access medical care being extremely ill and suffering . We have nowhere to go. And this is the shit we are dealt with when we do !! 

This consultant is contravening Irish  agreements to abide by WHO in stating she does not believe in ME will not treat those patients... and her fibro patients she sees short term and she basically told me she sends them on workshops which is mainly for the psychological management of issues and finishes up with them as quickly as possible.

Simon Harris minister for health this year repeatedly states all the consultants all the support services like neurology and rheumatology are there doing a brilliant job serving the the ME patients.
It's all great and nothing needs to be done, pathways to care are established!! 

The reason we are out protesting at Dáil Éireann next week is to get Myalgic Encephalomyelitis on the curriculum for medical students, to have these ignorant medics brought up to date on ME so that we can now access care with these consultants and not be met with derision and TO have a proper diagnostic criteria enforced for  accurate diagnosis of ME, helpful to doctors and patients alike.
We need  a specialist consultant of our own, educated to the complex nature of ME and it's multi-systemic issues and co-morbidity.

Last month the HSE mailed the ICC diagnostic criteria of ME to every neurologist in the country. This is a  good start. But we have such a long way to go.

( When I stated this little fact to my non believing rheumatologist, she said that had nothing to do with her and I wasn't going to re-educate her ... IN fact it does have to do with her. ME is inflammation of the brain and spinal chord which of course will have rheumatology knock on effects in some patients. 

We need them to know what they are at.  All doctors and especially a consultants job is to keep up with progress on disease and treatments etc and her refusal to do so is neglect and failure to do her job ), it's not my job to re-educate her that is correct its the HSE, its someone else in continual  education of medics AND its her own responsibility to keep up in whats affecting her own speciality.  
Why are very sick ME  patients continually having to deal with this  absolute BS*. 

I am so enraged after yesterday's appointment.  

Despite all my undeniable physical painful conditions that an appointment would take such a ridiculous turn and that I have yet again to fight tooth and nail for some basic health care in this country. 

Labelled with a condition of ME/CFS or fibro and you fall between the cracks of Health care ... or should I say are pushed down between them because they do not want to know and do not want to try figure out how to help you. Go home and rot. 

This is why MEAI will be at the Dail May 10th demanding change for  #Myalgicencephalomyelitis patients.


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