Peoples acceptance of disability/illness

mikki-b

I got I'll in2004 with ME. Had 3 months off work and went back too early because I felt if I didn't I'd never go back. Went back on 3 mornings a week to start with then after a few months (again too early) up to 4 mornings. The effort needed for work drained what little energy I had. I had the brainfog (those with ME or Fibro will know exactly what I mean) and being dyslexic as well meant some days I could nearly read. Thankfully family andfriends were great but there were a few people at work those atitude stank. I think they thought it was catching. Others couldn't understand why I was unwilling to go to walk around the plant. Basically I couldn't walk that far and it hurt! Or we'd be walking somewhere and they would set off at a normal pace and expect me to keep up. None of them really understood the full impact and several didn't want to, even when I explained that I couldn't walk that far or that fast it never really sunk in. When I started to improve after a couple of years I left. To be honest I couldn't cope with their atitude to me any more.
To those with ME, stay hopeful. I recovered. I now walk 2.5 miles every day, only get symptoms when I have seriously ov erdone it and have a normal life again.

mikki-b

I got ill in2004 with ME. Had 3 months off work and went back too early because I felt if I didn't I'd never go back. Went back on 3 mornings a week to start with then after a few months (again too early) up to 4 mornings. The effort needed for work drained what little energy I had. I had the brainfog (those with ME or Fibro will know exactly what I mean) and being dyslexic as well meant some days I could bearly read. Thankfully family andfriends were great but there were a few people at work those atitude stank. I think they thought it was catching. Others couldn't understand why I was unwilling to go to walk around the plant. Basically I couldn't walk that far and it hurt! Or we'd be walking somewhere and they would set off at a normal pace and expect me to keep up. None of them really understood the full impact and several didn't want to, even when I explained that I couldn't walk that far or that fast it never really sunk in. When I started to improve after a couple of years I left. To be honest I couldn't cope with their atitude to me any more.
To those with ME, stay hopeful. I recovered. I now walk 2.5 miles every day, only get symptoms when I have seriously ov erdone it and have a normal life again.

NEH

mikki-b wrote: »

I got I'll in2004 with ME. Had 3 months off work and went back too early because I felt if I didn't I'd never go back. Went back on 3 mornings a week to start with then after a few months (again too early) up to 4 mornings. The effort needed for work drained what little energy I had. I had the brainfog (those with ME or Fibro will know exactly what I mean) and being dyslexic as well meant some days I could nearly read. Thankfully family andfriends were great but there were a few people at work those atitude stank. I think they thought it was catching. Others couldn't understand why I was unwilling to go to walk around the plant. Basically I couldn't walk that far and it hurt! Or we'd be walking somewhere and they would set off at a normal pace and expect me to keep up. None of them really understood the full impact and several didn't want to, even when I explained that I couldn't walk that far or that fast it never really sunk in. When I started to improve after a couple of years I left. To be honest I couldn't cope with their atitude to me any more.
To those with ME, stay hopeful. I recovered. I now walk 2.5 miles every day, only get symptoms when I have seriously ov erdone it and have a normal life again.

I would still be very careful and not even seriously over do it if you can at all help it. Like you i had ME for 4/5 years to the point of being bedbound for at least a year (my memory isn't so good anymore) then i had two years of being relatively normal, able to work full time, go out till very late, walk long distances, go to the gym and then bang it came back with a vengenance again. If i had taken things more carefully then maybe the next relapse wouldn't have been so bad. I think i am currently now in my 4/5 relapse over a period of 16 years some last a few months, others a couple of years however now i have fibromyalgia instead of ME....Still be careful because you never know...

mikki-b

Thanks for your concern. I still am careful and have two warning symptoms (chest pain and muscle twitching) either of which let me know I'm close to the limit. Thankfully that limit is so much more than it used to be. I'm always aware that it could come back but I don't want to let that rule the good health I have now. Most people don't appricate goood health until they don't have it any more. Having been I'll I'd like to thing I now do.

FestivalsRUS

I have IRRITABLE BOWEL SYNDROME and I'm not afraid to talk about it

After all SH*T happens :rotfl::rotfl::rotfl::rotfl:

I'm sorry, I just had to say it :beer:

FestivalsRUS

Actually apart from my IBS, I have chronic problems with my knees, shoulders, hands and ankles.

The bones are just not built properly and I have so far ended up with 38 operations and trying to reach triple figures :rotfl:

My biggest problem is that because no one can see the scars and pains when I walk they look at me as though I am cheating people out of a disabled parking space.

It is ALWAYS ALWAYS ALWAYS OLD PEOPLE who do that to me - Anyone over 60. But they never see me on a bad day using the space as I cannot get out and about then

NEH

FestivalsRUS wrote: »

Actually apart from my IBS, I have chronic problems with my knees, shoulders, hands and ankles.

The bones are just not built properly and I have so far ended up with 38 operations and trying to reach triple figures :rotfl:

My biggest problem is that because no one can see the scars and pains when I walk they look at me as though I am cheating people out of a disabled parking space.

It is ALWAYS ALWAYS ALWAYS OLD PEOPLE who do that to me - Anyone over 60. But they never see me on a bad day using the space as I cannot get out and about then

Yes i used to get that when i had a blue badge, some of the old people gave me such looks...if looks could kill and all that...

MrsManda

Not read all the thread so hope I'm not repeating someone. I have Hydrocephalus and a non-specified seizure disorder as a result. I don't look ill even when I'm in pain so only those who know me whilst I'm symptomless can tell when I'm starting to go downhill. A bit of a problem when even doctors can't tell because they only ever see me feeling unwell and tests show nothing.
I don't know whether anyone will find this offensive (hope not because I don't mean to be) but I generally class whether I have a disability or not depending on the situation and how I'm feeling at the time. So normally I'd say I wasn't disabled, and I am in reasonable health. Yet when I'm getting symptoms (not the one off, last a few hours then I'm OK again but the ones where things are starting the downward slope towards surgery and treatment) I do occassionally pull the disabled card though I wouldn't necessarily see it that way - more that I will ask for extra time and consideration in my work/study, and have recently asked for a compulsory part of a course to be waived as I haven't been able to attend due to illness and don't want to fail just because I couldn't attend a couple of tutorials.
I am 'disabled' so get a disabled railcard and free prescriptions, and get DSA from the LEA. But I don't qualify for DLA or anything like that so I don't class myself generally as disabled.

Sorry I'm rambling and this isn't really the right place. Both my conditions are invisible and it's especially hard when I am in a lot of pain but because my way of dealing with pain is to take pain relief and go quiet it is easy for people to think I'm using it as an excuse to get out of class (though on the few occassions where I've gone from fine to suddenly very very ill those who witness it never doubt me again ). So for those people who I know I am going to be in contact with a lot - friends, classmates, work colleagues, I always make sure they're aware of the issues and what to do incase of a seizure. I point out that seizures are rare and I usually get so much notice there's little chance of me just keeling over. I've always wondered why epilespy and the associated illnesses have historically been seen as shameful. Perhaps it's because a seizure is scary to watch? I've always figured the best way of people treating me normally and not being afraid is to give them the details and encourage them to ask questions a little education does wonders

Trialia

FestivalsRUS wrote: »

My biggest problem is that because no one can see the scars and pains when I walk they look at me as though I am cheating people out of a disabled parking space.

It is ALWAYS ALWAYS ALWAYS OLD PEOPLE who do that to me - Anyone over 60. But they never see me on a bad day using the space as I cannot get out and about then

*nods* My multiple illnesses are invisible and I get that, too, mostly with bus seats though.