(no subject)
I'm feeling fairly angry at the moment I found an article earlier today outlining that five times as many people in the UK are affected by M.E/C.F.S than they are with AIDS..... Not only that but it's still not a 'real' illness.... Right then
Still however CFS has not got any government funding to find a cure for an illness that destroys lives and relationships and can be very dehabilitating to the sufferer. Not only that but it can open doors to other things like mental health disorders from having a chronic illness and other things like I.B.S and food sensitivities that you didn't have before. In worse cases you can be bed bound, need a wheelchair or support walking and yet people say it's 'all in the mind' or tell you that if you happen to look okay one day out of seven you must be better.
The point is the people who say this DON'T ever in a million years see you in this state because you don't want people to see you struggling to hold yourself up because you are so tired or bringing up your lunch because, well for some reason your vomiting today or just because you look and feel like death warmed up. A bad day with M.E is not something that you want to share. It's not pretty, in fact some stuff is a bit gross... Also on a proper bad day you usually have about (well I do, it varies) 4-5 waking hours if that, the rest is taken up by trying to amuse yourself with out caning your energy, causing more pain or falling asleep from too much effort.
It's not just physical effort either. Mental effort can knock you for six also. It's not just tiredness. it's M&E Tiredness with extra added Lame all the way from your immune system. ;o) It really does bite a big one.
For the people who tell us we are fine here's my Suki top 5 lame things about CFS
5. Giving up alcohol.... parties and any lairy fun in general. -It's too loud and takes up too much energy :(
4. Missing out on social life or family life. General Isolation. - You become kind of invisible when you get too ill to do much
3. Light sensitivity/Noise sensitivity - I like sun, loud music, clubs and gigs. All impossible when the lights/noise combo is a full on assault on the senses..... I manage maybe 3-4 club nights/gigs a year now maximum.
2. Random food sensitivity - cause random rashes are never worrying....
1. Always being Pale and ill looking because going out makes you panic - yeah i think that explains itself...
I do like being pale :) but sometimes want to sit all day everyday in the sun and read or just chat shit with the folks from the meadows. I also want to be able to see bands and go to parties and see my friends most days like I used to. I do enjoy my indoor quiet activities but feel at my age I should be out Avvin it with my mates.
I want to raise awareness for M.E and also get folk to stop asking rude questions...... I've decided to pick up work on the CFS awareness Zine. Any input would be appreciated :)
And to make up for the rantyness have some LOLcat action ;)
see more Lolcats and funny pictures
Still however CFS has not got any government funding to find a cure for an illness that destroys lives and relationships and can be very dehabilitating to the sufferer. Not only that but it can open doors to other things like mental health disorders from having a chronic illness and other things like I.B.S and food sensitivities that you didn't have before. In worse cases you can be bed bound, need a wheelchair or support walking and yet people say it's 'all in the mind' or tell you that if you happen to look okay one day out of seven you must be better.
The point is the people who say this DON'T ever in a million years see you in this state because you don't want people to see you struggling to hold yourself up because you are so tired or bringing up your lunch because, well for some reason your vomiting today or just because you look and feel like death warmed up. A bad day with M.E is not something that you want to share. It's not pretty, in fact some stuff is a bit gross... Also on a proper bad day you usually have about (well I do, it varies) 4-5 waking hours if that, the rest is taken up by trying to amuse yourself with out caning your energy, causing more pain or falling asleep from too much effort.
It's not just physical effort either. Mental effort can knock you for six also. It's not just tiredness. it's M&E Tiredness with extra added Lame all the way from your immune system. ;o) It really does bite a big one.
For the people who tell us we are fine here's my Suki top 5 lame things about CFS
5. Giving up alcohol.... parties and any lairy fun in general. -It's too loud and takes up too much energy :(
4. Missing out on social life or family life. General Isolation. - You become kind of invisible when you get too ill to do much
3. Light sensitivity/Noise sensitivity - I like sun, loud music, clubs and gigs. All impossible when the lights/noise combo is a full on assault on the senses..... I manage maybe 3-4 club nights/gigs a year now maximum.
2. Random food sensitivity - cause random rashes are never worrying....
1. Always being Pale and ill looking because going out makes you panic - yeah i think that explains itself...
I do like being pale :) but sometimes want to sit all day everyday in the sun and read or just chat shit with the folks from the meadows. I also want to be able to see bands and go to parties and see my friends most days like I used to. I do enjoy my indoor quiet activities but feel at my age I should be out Avvin it with my mates.
I want to raise awareness for M.E and also get folk to stop asking rude questions...... I've decided to pick up work on the CFS awareness Zine. Any input would be appreciated :)
And to make up for the rantyness have some LOLcat action ;)
see more Lolcats and funny pictures