The (not so old) Crocks Cafe -Part 2

needing-help

Trialia wrote: »

Thanks. Not going to lie, it can be pretty awful for those who have it severely. It's a big contribution to my fibromyalgia - sets it off constantly - and by the time I am my father's age, if not a good way before, I am likely to be in a wheelchair. Ash and I are the same age. I walk with a cane and am nearly housebound due to joint instability now.

I don't even want to think ten years ahead if I can help it. So I try not to. Just take it day by day and adapt as best one can to something like this. I don't ever want to be pitied.

I'm sorry I didn't mean to offend, I don't pity you it was just something I knew nothing about. Believe me I know all about the pity thing. I walk with a cane now and have 3 young children i feel like a freak show sometimes.

Are hypermobility and and fibro linked then, there seem to be a lot of people on here with both.

Apologies if I'm being too nosey/personal feel free to tell me to shut up:o

formaldehyde_perfume

Trialia wrote: »

It's not a symptom of EDS; it is a whole type in itself.

HMS is different to EDS; the presence of HMS can lead to a diagnosis of EDS, EDS hypermobilty type has added problems that HMS does not. To explain to someone who doesn't have to get their head around this stuff is difficult so I try to simplify it as much as possible, hence the ' ' in symptom as I know it's not accurate.

On a personal note; I have got an appointment with my Dr to get a referral to the Rheumy and pain clinic, another appointment with the disability adviser at the Job Centre and another one to fill out my form with the CAB disability adviser. I also emailed the local DIAL people but haven't heard back. I don't know if it will help, but I've found some paperwork to back up my claim for DLA including physio appointments dating back 2 years, DSA letters and the recent letter to my Dr from UCHL. None are specific about how far I can walk, if I can make a meal, care for myself etc but it might help.

ash4becks

needing-help wrote: »

I'm sorry I didn't mean to offend, I don't pity you it was just something I knew nothing about. Believe me I know all about the pity thing. I walk with a cane now and have 3 young children i feel like a freak show sometimes.

Are hypermobility and and fibro linked then, there seem to be a lot of people on here with both.

Apologies if I'm being too nosey/personal feel free to tell me to shut up:o

i no myslef i would rather be asked and educate someone than someone be arrogant about it like some people on here can be , so good on your foor googling it but it isnt always easy to explain properly because it can be complex

formaldehyde_perfume

ash4becks wrote: »

its took my dad a few months to realise that iam not faking this, no wonder if this is the way hms is shown to be like :mad:

My dad still doesn't believe me. When I'm zonked on the couch with the TV on (which happens to be most of the time now ) all he sees is a lazy git who won't get off her bum and work, not his disabled daughter in too much pain or too dosed up on pain killers to move. He doesn't see that 'working' for the past 3 years at uni has increased the severity of my condition drastically. I don't know what he thinks I 'want' the walking stick for, or why I was given a blue badge, knowing him it's probable that he thinks I lied to the council. If he knew I was applying for DLA I think he'd actually be horrified, he really disbelieves me that much.

Indie_Kid

formaldehyde_perfume wrote: »

My dad still doesn't believe me. When I'm zonked on the couch with the TV on (which happens to be most of the time now ) all he sees is a lazy git who won't get off her bum and work, not his disabled daughter in too much pain or too dosed up on pain killers to move. He doesn't see that 'working' for the past 3 years at uni has increased the severity of my condition drastically. I don't know what he thinks I 'want' the walking stick for, or why I was given a blue badge, knowing him it's probable that he thinks I lied to the council. If he knew I was applying for DLA I think he'd actually be horrified, he really disbelieves me that much.

How awful for you. (and ash)

I'm lucky - my parents do understand my disabilities to an extent. However, trying to explain to them that I have to sit in a certain seat when watching TV, as not to cause pain, was a bit difficult to explain.

formaldehyde_perfume

sh1305 wrote: »

How awful for you. (and ash)

I'm lucky - my parents do understand my disabilities to an extent. However, trying to explain to them that I have to sit in a certain seat when watching TV, as not to cause pain, was a bit difficult to explain.

Luckily my mum is ace :rotfl: She more than makes up for having a rubbish dad (we've never got on) Sometimes living with her can be awful, things get on top of her and she blames me for everything, doesn't meet my care needs, shouts at me etc but 90% of the time she's amazing, she knows exactly what I need and has always been there with me in case I fall (metaphorically and physically). I think I would have either been in jail, a mental institution or dead by now if she wasn't the woman she is

ash4becks

formaldehyde_perfume wrote: »

My dad still doesn't believe me. When I'm zonked on the couch with the TV on (which happens to be most of the time now ) all he sees is a lazy git who won't get off her bum and work, not his disabled daughter in too much pain or too dosed up on pain killers to move. He doesn't see that 'working' for the past 3 years at uni has increased the severity of my condition drastically. I don't know what he thinks I 'want' the walking stick for, or why I was given a blue badge, knowing him it's probable that he thinks I lied to the council. If he knew I was applying for DLA I think he'd actually be horrified, he really disbelieves me that much.

i have just looked at this and thought of my dad to a tea, i said to if i did get mobity car that he could go on the insurence, dad has always had bangers the embarassing car as school gate car basicly but he said he wouldnt want to , didnt explain why thou ,

mam as me is a bit funny way we are both with depression and she is still badly greving over nana but i dont see her that much but do talk on phone but she did come to my appointment then i think she realised why her best mate was so concerned over me few weeks before when i was really bad

formaldehyde_perfume

sh1305 wrote: »

How awful for you. (and ash)

I'm lucky - my parents do understand my disabilities to an extent. However, trying to explain to them that I have to sit in a certain seat when watching TV, as not to cause pain, was a bit difficult to explain.

I got on the floor to play with the dog this evening (baadddd idea) and couldn't get up, I didn't want to worry my mum so I just lay there but I needed a drink so I asked her to get one for me but she thought I was just being lazy (it is true, I can be quite lazy) I tried to explain but when she didn't understand I didn't have the heart to put it to her bluntly that my condition had obviously deteriorated to a point where I need that level of care. She has enough on at the moment... On the plus side, the dog thought it was brilliant having me there all to himself on the floor for almost an hour :rotfl:

Sometimes explaining things which are already difficult for you to handle can be too much to try and explain to someone else, especially someone close. That's why the DLA form is so hard on everyones emotions, because it puts it plain in black and white on paper what your limits are.

Indie_Kid

formaldehyde_perfume wrote: »

Sometimes explaining things which are already difficult for you to handle can be too much to try and explain to someone else, especially someone close.

What doesn't help with me, is the fact that I'm the only person in the family with these conditions, 2 are side effects and are somewhat rare.

formaldehyde_perfume

sh1305 wrote: »

What doesn't help with me, is the fact that I'm the only person in the family with these conditions, 2 are side effects and are somewhat rare.

Apart from the elderly, I am the only person with anything remotely 'wrong' with them in my entire extended family. My mum has Multiple Chemical Sensitivity but that's not technically recognised as a medical condition in the UK AFAIK. A lot of them are very insensitive and can say some truly hurtful things without even realising, some of my family don't even know I'm disabled. I had a a graduation party on sunday and felt a bit embarrassed so didn't use my stick (and boy did I pay for it today), but if I don't use it and really focus on my walking I look fine. I just didn't want the awkward questions.