I wish I could have attended, but with all the stuff I am already doing, I am struggling to manage so there's no way I could have done that too. Maybe another year I will be able to go.
I have done some M.E. advocacy work in the past, particularly when I worked in offices - for example, I organised an information sheet when I worked in one office and gave a little talk about M.E. A lot of the time people had/have no idea I have this disease as I hide it well. I have had so much stigma in the past, that it has become easier to pretend there's nothing wrong or to just remain vague. I sometimes feel bad for doing that, as if I am doing a disservice to the M.E. community, but I guess that I even that out a little by writing this blog and when people do actually ask me for information in person, I try my best to educate them that it's definitely not just about: "being tired all the time".
When I was younger, other people retorting that they were tired all the time... too, as if that was all it was about, used to really annoy and upset me. It was invalidating. I felt frustrated at my inability to put my point across and to fight my corner, but then the reason I could not do that was partly because I have M.E. and the cognitive function is not 100% working or present in the way it should be. Nowadays I do still get people who assume that M.E. is being 'TATT', but it doesn't affect me in the same way that it used to. I understand why people make the assumption. It sucks, but I get that they don't mean it personally. I have a kind of resignation to the situation: that they will never understand, unless they are afflicted themselves. It's been liberating to be able to get to that place and to accept that this may be something I cannot change.
I think on the whole the general public are quite ignorant about chronic diseases like M.E. When a person says they are exhausted or tired or fatigued, I try to remember how I felt like when I didn't have M.E. and I felt tired. I know this sounds a bit weird, but I remember there is actually a healthy tired. It's the kind of feeling after exerting yourself by going out for the day, and then feeling ready for bed, a nice refreshing sleep and waking up in the morning feeling ready to face a new day. People with M.E. don't have that type of tiredness, nor do they have good sleep, or wake up feeling refreshed. It's not even tired, it's as if the car has run out of petrol/gas: there's nothing there... no flicker of energy, no spark of life... when even cutting up some food on your plate and getting it to your mouth becomes too exhausting, that's not normal nor is it healthy and it certainly is not just 'tired'.
If only being tired were the M.E. sufferer's sole symptom, who knows, it might even be bearable to have chronic fatigue syndrome (as some people like to call it), but it's not... the whole system is affected. Every single area of the body's function seems to be affected: heart, brain, nervous system, endocrine system, musculoskeletal system, lymphatic system... even urinary/renal... I can't even remember all the affected areas... but anyway, it's like a computer being corrupted by a virus: eventually nothing works and it kinda implodes. Okay, so I haven't imploded yet, but I have noticed that over the many years of living with this disease, I have gained more and more health issues outside M.E. and there have been a lot of times where I have expressed a feeling of my body 'falling apart' so to speak... progressively getting worse.
So that's my explanation for the year!
Happy M.E awareness day to you, as sufferers I think it is a happy day as it's the one day of the year it is openly spoken about outside of the m.e community. I like the way you refer it to a computer virus, that's a good one to use :) x Hayley-Eszti
ReplyDeleteThank you for the lovely greeting! Yes, I think it is a good time, as the community rallies itself and I am sure we tends to be better heard when in masse like that.
DeleteArgh - should read: 'en masse' (autocorrect grrrrr)
Delete