Peoples acceptance of disability/illness

Marsh_Samphire

sh1305 wrote: »

I can't believe I've just had someone on here tell me I'm "lucky" to have my particular disabilities. Yes, I know I'm lucky I'm not blind; but am in no way "lucky" that I get tired quicker than everyone else.

I know exactly what you mean, I can only work 4 days a week because I have ME/CFS/whatever the current name is for Tired All The Time, asthma, anaemia (my consultant told me he felt sorry for me! and he can't treat it as there is plenty of iron in my system but apparently my body can't/won't use it to make red blood cells), underactive thyroid and serum negative arthritis.

I had to put in a grievance against work to keep my 4 day week when a new manager started as she couldn't understand why I need a day off midweek and wanted me to work my 28 hours over 5 days instead.

Two weeks ago I agreed to go to a team away day on my day off and I'm still getting over it.

People also can't understand a condition which fluctuates, how is it possible to be fine one day and can't stand up the next? Grrrr!!! :mad:

Indie_Kid

I agree. I mentioned that I get tired and someone says "so do I". Er, we all do; but I also (I know I shouldn't do) need sleep during the day.

Vicky123

Have to agree with Lolly post, I know children with genuine ADHD and what a difficult and debillitating condition it is.
ADHD is so often overused by parents whose children are nothing of the sort and the other thing I hear a lot from parents is describing their normal, healthy, energetic children as "Hyper".
The DLA comment seems to be pretty common and I have had parents tell me I'm lucky to get this benefit for my profoundly autistic child!
There was me thinking they were lucky that their children could function in the normal way, silly me.

lolly1981

thank you vicky..its nice to know someone agrees with me...my family tend to think that he is 'just being a boy'...that really isnt the case.
my youngest son is just a yr old and when i compare how he behaves in comparison to the other already the differances are apparent...ds1 was always on the go...nothing held his interest long...youd sit him down with a toy and hed be off in seconds looking for the next thing (i understand that all babies have a natural curiosity and like to get about) but ds1 was on a whole diff scale lol..ds2 is the complete opposite..he is very content to sit and play...he will play with something for a much longer length of time than ds1 ....he will sit and stare at a dvd case..or book..where as ds1 would quickly glance it.
so i know that ds1 isnt just being a boy...yes boys are boistorous...yes they are cheeky...yes they like to rough house but with ds1 it is more than that...his school SENCO (whos also the head) as said that he is a lovely caring little boy with classic ADHD symtoms..the things he does are never in malice (even if he hurts someone else) just impulsive.
i hope that people stop usinh ADHD as an excuse for badly behaved children (not the childrens fault tho in my opinion) and allow the children who really need the support to get it.

System

i know this is irrelevant to the thread, but *big hugs* to each and every one of you

sheeps68

RANT ALERT

Not feeling great on top of normal issues. Went to hospital for my normalmonthly treatment. Results not to great but got reprieve and allowed home. They will review if no improvement next week. Anyway my rant. I needed a seat on tube to go home. Still with hospital band on. No offers so plucked up courage to ask. No you're not disabled I got from shool girl and heads down from others along with muttering over heard of "things people will do to try and get a seat". I sat on the floor.

Rant over.

GlasweJen

sheeps, lots of people have hospital appointments and aren't disabled. If you don't "look" disabled and don't have anything to prove you are (like a bus pass) then chances are you wont be believed because there are people who aren't disabled and do take the mickey for the sake of a seat on the bus/tube. Not sure how your mobility is but you can get one of those walkers that has a seat in it, you might not want to use it for every day but if you know you're going to be using a busy tube service then you might want to consider taking one of these with you (you can sometimes get them free from mobility schemes if you only need it short term as well).

sheeps68

GlasweJen wrote: »

sheeps, lots of people have hospital appointments and aren't disabled. If you don't "look" disabled and don't have anything to prove you are (like a bus pass) then chances are you wont be believed because there are people who aren't disabled and do take the mickey for the sake of a seat on the bus/tube. Not sure how your mobility is but you can get one of those walkers that has a seat in it, you might not want to use it for every day but if you know you're going to be using a busy tube service then you might want to consider taking one of these with you (you can sometimes get them free from mobility schemes if you only need it short term as well).

Proof = freedom pass, nebuliser, DLA letter, blue badge. None of that counted it seemed.

GlasweJen

Hmm, in that case it's appalling! I'm not from london so not sure how the tube works. Is it possible to call ahead and get a seat reserved for you or even is there a conductor you could speak to when you're on the tube who can address your need and move someone to get you a seat?

Invasion

Marsh_Samphire wrote: »

I know exactly what you mean, I can only work 4 days a week because I have ME/CFS/whatever the current name is for Tired All The Time, asthma, anaemia (my consultant told me he felt sorry for me! and he can't treat it as there is plenty of iron in my system but apparently my body can't/won't use it to make red blood cells), underactive thyroid and serum negative arthritis.

I had to put in a grievance against work to keep my 4 day week when a new manager started as she couldn't understand why I need a day off midweek and wanted me to work my 28 hours over 5 days instead.

Two weeks ago I agreed to go to a team away day on my day off and I'm still getting over it.

People also can't understand a condition which fluctuates, how is it possible to be fine one day and can't stand up the next? Grrrr!!! :mad:

ME/CFS isn't the "current" name for tired all the time.... it's utter exhaustion totally unrelieved by sleep, it affects temperature control, disturbs sleep, affects muscles, causes extreme pain, affects balance, causes light, noise, smell sensitivity.

I'm sorry if you knew this and I'm sounding patronising, but there is so little understanding about ME without people describing it as tired all the time. Plus, so many people who self diagnose CFS/ME because they're tired!