Speak Your Truth Presentation

Speak Your Truth

There is a huge amount of misinformation  surrounding  Myalgic Encephalomyelitis; I emphasized , in my presentation at the AONM / Midlands Fibromyalgia Group  Irish International Conference on Oct 9th, how important it is to stand up for the  truth of ME, as a devastating,  neurological disease .

For the last seventeen years I have cared fill time for my wife, who has Very Severe ME. I have learned a lot about how to cope, how to care for someone that ill and how to fight.

It is very difficult, there are  not many doctors or consultants with the experience and knowledge to know how to treat people with ME.  The fact is, if  you  are to achieve anything for the person you will have  to fight  every step of the way. 

We  have shown  how it is possible to get an biomedical service , that the person with Severe ME does not have to left , with nothing being done for them, for decades on end, as is so often the case.

It  takes enormous courage , as a carer, not to compromise, to keep on struggling despite  the odds, to put oneself on the line, time and time again; to  never give up, to find a way through  the never-ending,   grinding pain and suffering, to   make the  necessary connections, to advocate , to push , to deal with the inevitable inertia and snails pace rate of change - and your own anger.

For sure you will be pushed to the edge , as I showed through the  paintings I shared, but with my wife  so completely ill, giving up has never been an option for me.

Hearing  the person’s  truth - which  brings its own issues and then standing up for it,   is the only way ultimately, I believe ,  that you can help the person  with Severe ME and yourself. 

In my presentation I tried to share a little of what I have learned : how to  be in the moment with the person, how to  focus , how to be gentle ,  how to keep going and growing .

Art, music, writing, these things keep me alive, and give me enormous hope .

I am greatly encouraged these days by the pioneering work of the AONM ;  they have seemingly burst out of nowhere , with  a  fresh new energy, a  dynamic , ultra-committed  approach to working alongside patients and carers ; an uncompromising determination  to  find a way forward, especially for the most severely ill. 

In all these years, I  have never known anything like it. I feel we are riding a wave of change, at last.

 One  day soon and it won’t be long, now I feel,  we will , all of us, surely make that long-awaited and desperately needed biomedical  breakthrough.


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