Cambridgeshire Live article: Cambridge Dad living with ME becomes so exhausted he can't walk downstairs

[bobbler]

When I first got sick in the early 90s, I got full testing for other things (before the CFS diagnosis). When the tests came back negative, the registrar in charge of my case says "well, its really difficult to find what's wrong, because your symptoms are nonspecific like fatigue".

And I replied, "But I never said I had fatigue, I said that I felt like I had a severe flu, which can go on for 2-3 months at a time, so bad that I'm completely bed bound".

He said "well, you say you can't get out of bed, isn't that the very definition of fatigue?"

I suppose having your back broken is also fatigue.

That sounds about right to what’s been done to us as a world dystopia where our voice is now reworded. Hard to describe how everyday this rewording is and how impossible it makes living

As fir existing - well do we at all if when we describe ourselves we are reworded? And EVERYONE is encouraged to do this to us pretending it isn’t the most awful aggression’but if we’ve a different understanding in what we suffer we, the ill looking one , must have just explained it one so there ke with ten seconds expertise has reworded it for you ‘

 

[bobbler]

When well, I used to feel tired after several hours of cross country skiing.

That tiredness in no way resembled this continual burning muscle pain, weakness, constant flu-like experience, pre-syncope, short term memory problems, very frequent GI symptoms, joint aches, unusual headaches, and post-exertional malaise with minor exertion. The fatigue I feel is inextricably linked with all the above symptoms, and more. I would say fatigue, yes, but so very, very much more.

It would be interesting to talk to some with illnesses like MS where their fatigue has been lumped in as if like ours to actually find out where/if there are similarities ie how crude this ‘it’s all fatigue’ is

in our case they’ve taken a whole illness and hand-waived it into a symptom we don’t even then get control of the meaning of so it was always nonsense having it in the name