help with esa support group

survivor_13

GlasweJen wrote: »

I have an almost identical set of medical conditions to survivor and i'm only 23, i have a full time job and have worked since I was 15 so not really sure why they are so insulted at being in the work focus group, can't you see it as a positive thing rather than greet over the extra £5 a week?

The reason i'm "insulted" is because so far i've done everything in accordance with the rules and guidelines that they've laid down, but still they manage even more hipocrisy and change the goalposts at every turn.

Right now i should be trying to focus my energy on many other things to improve my overall health and well being, and when it comes to it work WILL be one of things that will be addressed, but not for a long time.

I haven't went fully into what is wrong with me on this forum, but if your symptoms are infact identical which i doubt ( dont mean that in a bad way, just only way to say it) how exactly are you able to work a full time job at 40 hrs week ect?

Indie_Kid

GlasweJen wrote: »

I have an almost identical set of medical conditions to survivor and i'm only 23, i have a full time job and have worked since I was 15 so not really sure why they are so insulted at being in the work focus group, can't you see it as a positive thing rather than greet over the extra £5 a week?

Disabilities affect everyone differently.

healy

survivor_13 wrote: »

The reason i'm "insulted" is because so far i've done everything in accordance with the rules and guidelines that they've laid down, but still they manage even more hipocrisy and change the goalposts at every turn.

Right now i should be trying to focus my energy on many other things to improve my overall health and well being, and when it comes to it work WILL be one of things that will be addressed, but not for a long time.

I haven't went fully into what is wrong with me on this forum, but if your symptoms are infact identical which i doubt ( dont mean that in a bad way, just only way to say it) how exactly are you able to work a full time job at 40 hrs week ect?

The work focused interviews are not about finding you a job straight away, they are about helping you to progress towards a job in the future.

I think you may be wasting your time pursuing this as very few people get into the support group.

survivor_13

Might as well be clear to paint a picture of why i cant work.

i Have autonomic neuropathy, a complication from insulin dependant diabetes affecting my stomach and heart. Continence issues result from this constantly. Also rapid drops in blood pressure giving blackouts, loss of hearing and vision, breathlessness.
Also hyperadrenalism and neuralgic pains from the autonomic neuropathy.
All of these together are hard enough, making any kind of daily routine impossible. And as many know, the key to having any kind of diabetic control is routine.
Because of this blood sugars and insulin dosage varies wildly.
Throw into the mix the vast amount of side effects from the medication used to treat the multiple issues and its quite a melting pot.

At present and for the last 8 months i've been in constant contact with doctors trying to change and modify doses of meds, types of meds and much more just so i can have some sort of resemblance of a normal life instead of having to calculate each and every movement made every hour of every waking day to to make it to the next.

I'm sorry if it has made me bitter but rightfully so. If they think they can make some kind of plan for me to be in a working environment where screaming in pain, crapping my pants, vomiting from high blood sugars or ranting like an idiot from low blood sugars, or blacking out/ going deaf, blind and breathless from rapid dropping blood pressure is totally acceptable then hell sign me up.

GlasweJen

37.5 hours a week on a rolling rota it's well documented from my previous posts that I collapse at least 3 or 4 times a week though I can usually count on 1 every day. I can't control it, it just happens and people just have to live with it if it happens at work. If I crack my head off of something they'll call an ambulance.

I wear continence clothing due to poor control as my vagus nerve is shot to bits, it's one of these no one I work with knows situation but the boss knows and i can use the disabled toilet, have wet wipes and bepanthem in my locker and again, I just get on with it.

I don't use the phone much because my hearing is crap but everyone knows that and works around it, I deal with customers in the department face to face so that I can have an idea of what people are asking me, I'm waiting for hearing aids but they're finding it difficult to fit me because the telecoil could interfere with my pacemaker.

I have triangle grips on my pens, a writing slant and overlays at work to help me do paperwork. I can also print stuff out in larger type if I need to.

survivor_13

also i see the irony of mentioning "ranting like an idiot from low blood sugars" in the middle of a mad rant, but i just checked and its at a semi-acceptable level

GlasweJen

sh, i'm aware that everyone is differently affected but the attitude of ESA is that almost everyone can do something. The OP could probably set up self employed or train for a desk job or anything in their eyes so wont get put into the support group which is generally for the severely mentally ill, terminally ill or people who have severe learning disabilities.

survivor_13

GlasweJen wrote: »

37.5 hours a week on a rolling rota it's well documented from my previous posts that I collapse at least 3 or 4 times a week though I can usually count on 1 every day. I can't control it, it just happens and people just have to live with it if it happens at work. If I crack my head off of something they'll call an ambulance.

I wear continence clothing due to poor control as my vagus nerve is shot to bits, it's one of these no one I work with knows situation but the boss knows and i can use the disabled toilet, have wet wipes and bepanthem in my locker and again, I just get on with it.

I don't use the phone much because my hearing is crap but everyone knows that and works around it, I deal with customers in the department face to face so that I can have an idea of what people are asking me, I'm waiting for hearing aids but they're finding it difficult to fit me because the telecoil could interfere with my pacemaker.

I have triangle grips on my pens, a writing slant and overlays at work to help me do paperwork. I can also print stuff out in larger type if I need to.

thats actually pretty amazing
Gives me hope that i'll manage somehow
how long did it take to get it together and manage the symptoms well enough?

survivor_13

GlasweJen wrote: »

sh, i'm aware that everyone is differently affected but the attitude of ESA is that almost everyone can do something. The OP could probably set up self employed or train for a desk job or anything in their eyes so wont get put into the support group which is generally for the severely mentally ill, terminally ill or people who have severe learning disabilities.

you say for the severly mentally ill ect but its not. The criteria is there and has been met.
Had they a different set of rules and i didnt meet their criteria then fine i'll accept that.
But they are not following the rules they have laid down themselves

GlasweJen

diagnosed at 17 but i've had symptoms since I was 13. Access to Work helped me lots and arranged for taxis and stuff so that I'm not collapsing on buses which is great, I pay them the amount that a weekly bus ticket costs and they pay the rest. They also paid for the writing stuff. Work got me assessed by an occupational health person who was really nice but she didn't know much about how to help me but she did get me a desk without corners, a really cool chair and between work and access to work someone will eventually get me a phone that can work with my hearing aids but that's a few months away.

Only took them 3 or 4 weeks to get it together once I'd taken the job. The taxis took longer because i didn't need that support when i first started working.