When
I got diagnosed with Chronic fatiuge syndrome it was explained to me what it
was & a plan was put in place to try to get my better in all fairness to
the consulatnt he was amazing. He even showed me a picture of my brain compared
to someone without MEs brain which was really intresting & Iv'e also shown
members of my family that picture in conversasions about my condition.
It's not easy living in pain & being exausted all the time I hate resting its my worst nightmare in my opinion it is the devil in discuise.
The doctors put me of a rehabilitation proggramme for the ME, I started doing really well at the start the dr said because of my will to get better I had been able to get better faster than most people he's ever seen. But then winter came knocking me back,Iv'e now completed this rehabilitation programme so many times,Iv'e sucseesed so many times but fallen back so many times.
It gets very frustrating because I try so hard to get better but only ever seem to go backwards I can read & write now & spend alot of time doing that when I can but I feel like there's so much surrounding ME that noone talks about like the lonlieness of being trapped between four walls every day for months or even years on end.
Not getting out in the fresh air is never good, you need fresh clean air as much as possible but that is impossible if you can hardly move & can't even go for a drive around in the car because your to tierd to move.
I have really struggled with bordom a awful lot I have fandoms but they've also worked the oposite way & made me feel worse because I got to attached & that isn't ever a good thing either.
As much as this helped its also caused me so many extra problems I think what is needed in diagnosis or when a dr takes over your care is ways you can distract yourself or things you can do that don't involve much effort so they are possible to do on the most awful days.
They don't give you any of this even if you enjoy T.V & films alot your gonna get bored of them theres only so much stuff you can watch its also not good for you to look at a screen foe to long.
What also bugs me is the amount of competitions on daytime T.V theres alot of competitions on T.V but daytime TV id by far the worst its not just that but also the bingo adverts. I'm pretty sure if I was any older & had this condition I could quite easily get into all thesse gambling or bingo sites as I'm really bored all the time & want some excitment just like anyone else.
I also feel if you have just become ill & maybe had to give up work,live alone & are stuck in alone all day with hardly any income it would appeal to you quite alot. This could lead to addiction then maybe even eventally get so badly addicted you end up in rehab having to get help, you could losse your home or get into serious debt, on top of all your other problems.
What annoys me most about this & I suposse its the same for any illness but these adverts & competitions are aimed at people who at at home bored & have little income there getting you hooked because they want money they don't care about you at all.
I think people should be given links or information on support groups instead of having to find them for themselves, groups should be set up for people to meet others going through the same thing this way people would feel less isolated & alone beacuse its easy to feel like you are. Everyone needs social interaction but its hard when you feel noone undertands you or your situation. If youre around people who are going through the same this isn't a issue.
I also belive that overall people need to be more understanding, what my school did to me in any circumstances isnt okay & Ive spokenn to alot of people whos schools have done similar things which again isn't okay I would love to somehow work within schools or with them to somehow help them understand ME or to somehow work with them because noone should be treated the way I was all they need is a little more understanding or to be taught how to handle it.
I don't belive I can change the world but I do belive the world needs to change people need to become aware of cetain things that impact others even ones withot illnesss & I'd like to think that in the future people will be more understanding & stop seeing people as numbers,stats or just another patiet people need to look deeper into peoples lives than they do.
You never know what people are going through & it takes hardly any time at all to try & think about how to hwlp make someones life easier,its mostly people in power who won't see people as atual people like the goverment schools or hospitals alot needs to change but I somehow hope it can.
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