living with a chronic condition (part 4)

Careful_with_that_Axe

jazabelle Does your local Council have a Disability Support Officer? Some job title like that anyway - may be worth phoning and asking or contacting the local Job Centre and asking for advi9ce from them where to go?

jazabelle

Careful_with_that_Axe wrote: »

jazabelle Does your local Council have a Disability Support Officer? Some job title like that anyway - may be worth phoning and asking or contacting the local Job Centre and asking for advi9ce from
them where to go?

Is that like a welfare officer? The one we have only helps organisations. My mum works at the council and emailed her, but there wasn't a lot she could do. Don't think we have a Disability Support Officer. Thanks for the suggestion though!

I will ask at the Job Centre when I next go in (which is sadly often at the moment!) I finally have a job for two days, but trying to look for a one more day. Two days is completely exhausting me though. People look at me like I'm insane, in my early 20's and not able to have a full time job.

jazabelle

Ooh, my grandad has just told me someone from his doctor's surgery came round to help him claim for attendence allowance, but couldn't remember what their title was. Anyone have an idea so I can call my surgery without being totally clueless please?

Just rang them - it's a Care Advisor, but she's on holiday for four weeks. Typical!

Invasion

This thread moves so fast my weeny little brain just can't keep up I come back and read a few pages when I can, but as far as anyone being cliquey, I can't say I've seen it.

-clears throat- Hi all, I'm Rachel, I be 17 and I have ME, possible fibro, migraines, chronic daily headache (the name sucks, it's been CONSTANT and severe for over 2 and a half years now) possible IBS, and for the last month or so, Vertigo! I also have a painful big toe currently I live in Shropshire and with the help of my amazing mum, have recently (a year ago now!) set up a support group for young people with ME! I use a wheelchair outside the majority of the time, crutches for short outside jobs, and inside at anyone's house but my own.

I had my first day (tis actually an hour! :P) back at college today, after 2 and a half months off, and it was a bit of a nightmare, roads closed so taxi late and then by the time I got to my lesson- 60 metres from taxi to room, yes I measure - my arms were falling off and I was sooo hot, I'm now slightly concerned college is going to become a wheelchair, rather than crutches job, which I guess I knew, as 60 metres is a maxiiiimum without concentrating too, but this isn't a group of people who I've used a wheelchair with more than a handful of times before, they're not friends, who understand, and fight to push me they're more likely to look at me weirdly and just be silly and immature about it.

We also have stools- with backs- in the lab, and after that amount of time off it's going to take some time for me to be able to cope with that again, I had a bit of a- very surreptitious!- cry in there today I was in so much pain! I know I should say something, but the tables are too high for a chair, and I hate to be different or draw attention to myself. Sitting practically unsupported is such a huge nightmare.

I talk. Alot. x

jazabelle

Invasion wrote: »

We also have stools- with backs- in the lab, and after that amount of time off it's going to take some time for me to be able to cope with that again, I had a bit of a- very surreptitious!- cry in there today I was in so much pain! I know I should say something, but the tables are too high for a chair, and I hate to be different or draw attention to myself. Sitting practically unsupported is such a huge nightmare.

I talk. Alot. x

Oh god, that's awful. Please, please say something. If it's making you cry - you can't just put up with it. I know we all hate being awkward, and making everyone change things, but to be fair it's everyone's right to be as comfortable as possible when they're disabled. Just have a quiet word, or maybe an email or letter if you can't do it face to face, and ask for a comfortable chair.

I've just finished uni, and I was always being awkward! We had to do a lot of presentations, and I would never stand to do them and that kind of thing.

poohbear59

jazabelle wrote: »

For example I'm finding it really difficult to find an organisation near me to help me fill out the disability living allowance forms. I've tried DIAL, CAB, Disability Essex and Essex Disabled People's Association with no luck. Obviously I'm in Essex, Colchester to be exact, and everywhere seems to be an hour away or more that. If there is anyone near me - do you know anywhere that could help?

As for my chronic conditions, I have Fibromyalgia, Hypermobility, Chronic Fatigue, Metatarsalgia, Asthma and flat feet!
SNAP!! I haven't before, come across anyone with all the same things as me.

Hi, My sister works in a library and people often ask for advice there. I can ask her for you if that is any help>

jazabelle

poohbear59 wrote: »

SNAP!! I haven't before, come across anyone with all the same things as me.

Hi, My sister works in a library and people often ask for advice there. I can ask her for you if that is any help>

Ooh, me neither!! Do you ever think one has led to the other? I was diagnosed with flat feet and Metatarsalgia 11 years ago, then all my back problems and chronic pain of Fibro happened 7 years ago. I wonder if my feet being messed up led to the rest of my body becoming so?

That would be great, thanks

sammy10

Invasion wrote: »

We also have stools- with backs- in the lab, and after that amount of time off it's going to take some time for me to be able to cope with that again, I had a bit of a- very surreptitious!- cry in there today I was in so much pain! I know I should say something, but the tables are too high for a chair, and I hate to be different or draw attention to myself. Sitting practically unsupported is such a huge nightmare.

I talk. Alot. x

Hi, I went back to do a night class in biology a few years ago (and Im a lot older than 17!) In the lab we used there was a chair in the corner that was high enough to reach the tables but it had back and side support. The tutor said one of his students during the day was disabled and found it too painful to use the ordinary stools so the college bought her this chair from their "disabled students fund" It might be worth checking if there is something similar at your college.

Oh and I talk too. A Lot;):rotfl:

kassandra

Ruby_Moon wrote: »

I thought I was the one being reasonable!
I am as I would be in real life. I wouldnt jump into a circle of women in real life and start off by saying "Hi, Im Ruby and I have x,y and z. What do all you lot have?" I think that THAT is fairly impolite.
It is more my way to say "Excuse me, it seems a bit cliquey but am I ok to join in?"
Maybe wrong of me but thats how I am. I also cannot help feeling that there are several of you in here who have easily taken offence to that and are defending each other left, right and centre instead of just saying "Sure you can join in"!!
Why is it that someone comes along and says I DONT FEEL WELCOME and 80% of you all get defensive about it?
Perhaps these newbies who cant get in have a point.
It isnt JUST me! I have recieved messages from other members who have also said the same thing...that they had tried to "get in" to this thread but were completely ignored or blocked.
I will forward them onto the relevent person.

You say that you need no negativeity and yet thats all you wrote back to me. You could have left it with the pleasant message you did leave. Why add fuel to the fire by joining in and 'blaming' someone else for the unwelcome atmosphere? I would like some support too, do you honestly think you are giving it? You understand what it is like for us all and yet you ridicule?

You also call me insensitive which is far from the truth of it. I have much empathy, sympathy and feeling for so many people in so many ways.
I said that I could not jump into the thread and say "Hello" when the poster was describing her ordeal for exactly that reason. Becasue I AM sensitive. It was hardly the right time.
The point I was making was that there are a lot of 'hardly the right times' in this thread.

Seriouly, do you girls not see how cliquey and 'gang uppy' you may appear to outsiders??
Put everything you have all said and done into a real life situation and you might see how others look on it.

That's exactly how you would join in on a support group in real life by introducing yourself and telling us a bit about yourself I'm not getting into an argument with you, it's ridiculous!

jazabelle wrote: »

It is really difficult jumping in when you don't know people. I got some really warm welcomes and nice responses to my introduction post, but then when I joined in once more, I didn't get a single response.

I realise it's difficult for you all as well, you know each other, know each other’s history so of course you're naturally going to be talking to each other, but it is difficult for new people.

Perhaps we should have something of a fresh slate - introduce ourselves, maybe where we're from, and what conditions we have? I'm sure you've all done it a million times, but would help to find common ground? I would love to find out there are people near me with similar conditions and what help they've found from their doctors, etc.

For example I'm finding it really difficult to find an organisation near me to help me fill out the disability living allowance forms. I've tried DIAL, CAB, Disability Essex and Essex Disabled People's Association with no luck. Obviously I'm in Essex, Colchester to be exact, and everywhere seems to be an hour away or more that. If there is anyone near me - do you know anywhere that could help?

As for my chronic conditions, I have Fibromyalgia, Hypermobility, Chronic Fatigue, Metatarsalgia, Asthma and flat feet!

Hi Jazabelle, I don't think we've met. I'm sorry if you didn't get a response but that happens to me too sometimes. You occaisionally miss a post in the middle of things but I know it's never done to me on purpose and I hope you do too. I have Fibro, Hypermobility, Chronic Fatigue, IBS and Diverticular Disease. I don't have an alias name. I'm 31 with four children and I've just started college today :beer:

Invasion wrote: »

This thread moves so fast my weeny little brain just can't keep up I come back and read a few pages when I can, but as far as anyone being cliquey, I can't say I've seen it.

-clears throat- Hi all, I'm Rachel, I be 17 and I have ME, possible fibro, migraines, chronic daily headache (the name sucks, it's been CONSTANT and severe for over 2 and a half years now) possible IBS, and for the last month or so, Vertigo! I also have a painful big toe currently I live in Shropshire and with the help of my amazing mum, have recently (a year ago now!) set up a support group for young people with ME! I use a wheelchair outside the majority of the time, crutches for short outside jobs, and inside at anyone's house but my own.

I had my first day (tis actually an hour! :P) back at college today, after 2 and a half months off, and it was a bit of a nightmare, roads closed so taxi late and then by the time I got to my lesson- 60 metres from taxi to room, yes I measure - my arms were falling off and I was sooo hot, I'm now slightly concerned college is going to become a wheelchair, rather than crutches job, which I guess I knew, as 60 metres is a maxiiiimum without concentrating too, but this isn't a group of people who I've used a wheelchair with more than a handful of times before, they're not friends, who understand, and fight to push me they're more likely to look at me weirdly and just be silly and immature about it.

We also have stools- with backs- in the lab, and after that amount of time off it's going to take some time for me to be able to cope with that again, I had a bit of a- very surreptitious!- cry in there today I was in so much pain! I know I should say something, but the tables are too high for a chair, and I hate to be different or draw attention to myself. Sitting practically unsupported is such a huge nightmare.

I talk. Alot. x

Hi again Invasion. It can move very fast can't it! That's sometimes the trouble you see, because it takes a while to catch up and by the time you go to reply you've forgotten who you were replying to and what you were going to say! Do ask at college if you are finding things difficult, that's what they are there for. Yay you for the support group :beer: That's a fantastic thing to do, you should be very proud of yourself!

sammy10

kassandra wrote: »

Sammy, that sounds awful. My mum was epileptic and I remember as a child they would always try and hide it from me when she had a seizure. I remember being so worried cos my mum kept on being taken away and no-one would tell me anything. She was quite embarrased by it too. She didn't tell anyone she had that condition which frustrated me like crazy as I felt the people at her work needed to know in case anything happened. The day she died (so to speak, officially it was two days later but I knew she wasn't there anymore) her boss rang me and said she had been taken to hospital after collapsing. I wasn't worried and told her boss she was epileptic. She had said she was fitting so I just presumed it was an epileptic seizure. It was actually an aneurism that had burst. I'm rambling now and going way off topic :eek: so I shall stop talking now. I'm way too tired to really make sense anyway so I shall just wave and send positive thoughts your way

I know how your mum felt, I get embarrassed by it too and have learnt to my cost that you shouldnt tell people unless you want them to run screaming for the hills. I sometimes think it would get less of a reaction if I told them I had leprosy The amount of people who think its contagious is unbelievable :rolleyes:
Sorry about your mum and thanks for your reply.