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Dedicated Care for ME/CFS Needed for Toronto Hospital: In Memory of Emily

If you have severe ME, what has been your experience with hospitalization?

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priya

permanently dislabeled
Messages
28
Emily Collingridge's death was deeply saddening - and the last straw for me regarding hospital care. Though details of her death have not been released, she mentioned to me that she had a severe relapse after her previous hospital admission. People with severe ME/CFS often opt to refuse admittance to hospital because they know that their care needs will not be met, resulting in further relapse. Health Care needs to be inclusive of this vulnerable population, this is why I'm petitioning Leona Aglukkaq, Minister of Health - Canada; Dalton McGuinty, Premier of Ontario; Rob Ford, Mayor of Toronto and two legislators from my riding to create a dedicated care unit in Toronto for people with ME/CFS who need hospitalization, long-term care or respite for themselves or their caregivers.

I was hospitalized for two years in my thirties and it almost killed me; six years later I have not recovered from the relapse it caused. Presently, I choose to forgo hospital care that I need because I know that the Health Care system as it presently stands is intolerable - and any system that causes people to make this choice is not serving them.

Please sign and share the petition below. It is my dream to see these units in every major urban center. We've lost too many in our community due to lack of adequate institutionalized Health Care.

Thank You.


http://www.change.org/petitions/me-cfs-dedicated-care-unit-in-toronto-hospital-needed
 

MNC

Messages
205
This is just terrible.

I recently went to Emergencies in a private Hospital, suppousingly better than public.

All personnel were foreigners to start with. They are cheaper, while our doctors and health professionals are unemployed or emigrate by many.

I barely could stand up or talk. I was very, very ill and came from home where I had suffered a violent episode of sudden stomach pain, bloating and extraordinary diarrhea before I suffered a vasovagal episode where I fainted in agony as my blood pressure dropped in a matter of minutes.

So the nurses were just disgusting. The less polite you can imagine. Not to mention a bit of empathy or showing some concern for my terrible state. They started asking what I had in the worst manners. I just couldn't even talk and they were so so so unpolite and rude. I managed to tell them somehow with great difficulty. Then the foreign doctor came in and asked the same. I said, "ask them, I already told me". And she insisted that I should tell her again. Imagine me with my head spinning around panicking by feeling near death trying to face that situation. So I repeated the whole story again to those ladies.

Then they left and the nurse came to inject me some stuff. I asked her what was she going to inject me, that I had CFS and severe Dysautonomia with dangerous reactions to many medications. She refused to tell me and with the worst manners she asked "ok sir, if you don't let me do it I will go". I said: "I have the right to know what you are going to inject me and I'm telling you I have CFS with severe Dysautonomia"...

So she left and started bitching to the others outside th room and then 3 of them came saying every kind of threat. I got really angry and tried again to explain the whole thing. Imagine their reaction and my reaction. A security guard came and tood looking at me defiant. It was such a horrible situation that I told them I wanted to leave right there, that I rather died than tolerated that. In a matter of seconds I started vomiting like there was no tomorrow. I was sooo ill and these animals gave me a super stress.

Finally the doctor, with arrogance and angry told me what they wanted to inject me. Guess what, a tranquillizer and a narcotic among them...

And so it is every time I go to hospital or I have contact with these "health professionals".

You start by feeling a foreigner in your own country. Being helped by people that "hate you" for being a native. Then all the rest which is our routine.

One day I'm going to get into legal problems for doing something out of myself. It is just too much.