Blue Badge

serenity79

I didn't know what those handles were so I had to google them My crutches have ergonomic handles to help me grip them but I'm not sure if they are just as big as those. My crutches are pink!! I love them as they don't make that horrible clicking noise that you always seem to get with NHS crutches.

But I feel we are going a tad off topic. I got my blue badge on a discretionary basis before I actually got DLA, but it took my GP that long to fill out his supporting documentation that as it turned out there were only a matter of weeks in between receiving the two things.

I have have lots of times when we have pulled into a disabled bay and I've seen people staring at us, a young, absolutely gorgeous couple in our early 30s...... what? OK, lol, a couple in our 30s, who look perfectly normal. But then I put up my blue badge and my husband goes to the boot to get out my wheelchair and suddenly these people don't know where to look

Trialia

SingleSue wrote: »

It's a running joke at our local cottage hospital...they know me by sight and usually ask "Ok, which one of you is it this time?" :rotfl:

:rotfl: I've had that one happen, yeah. My stepmother (yes, not blood related) had a few years of dislocating her right shoulder - instead of going out forward or backward like mine do, hers went straight down (which I'm told is more normal for people without HMS/HEDS?). Anyway, one day it went out, so we had to take her to A&E, a paramedic came to get her (none of us drive & we lived 10 miles from A&E at the time), and I went with her in the paramedic's car.

On the way there, we went over some speed bumps. And my shoulder came out.

My dad arrived at the hospital, after making arrangements for my sister and getting the bus into town, to be greeted by the nurses, "Who would you like to see first, your girlfriend or your daughter?" (They knew him pretty well by that point too.) He tells this story quite a bit! Beth was out cold with painkillers, so he came to see me first... But they all know my family at that hospital. My mother was in and out of there for years with lymphoma, and I wound up in there 9 times in 18 months before they diagnosed me with HMS/HEDS.

Trialia

serenity79 wrote: »

I know what you mean about the frequent visits to A&E, I feel like they should set aside a private room for me there. I dislocated my left shoulder a few months ago just by turning over in bed - every time someone saw me in my sling they'd be all "OMG, what have you done?" thinking I'd have some elaborate tale for them. "Ummm.... I was in bed and I rolled over to answer the phone" isn't as exciting as they hoped.

*laughs* Oh so familiar! Once I just reached for something next to me and crunch, pop, shoulder was out. But I can't sleep on either side in bed, because that is an automatic recipe for waking up with my shoulders out.

I'd just like to be able to game for a couple of hours without dislocating my fingers. Is that so much to ask? I used to be a Tekken tournament champion, and now I can't even play a whole game.

Your passing out - is that dysautonomia related? I'm told that can crop up with HEDS, too, though I don't know if it does with me (I have lousy blood pressure and plenty of near-fainting spells, but not diagnosed as anything in particular).

My sticks are plain black metal, but I'm happy with that as they match most of my clothes. *G* (I hang around with goths a lot; it rubs off! )

JJ, I have a chair for the bathroom, too. I can't stay on my feet long enough to shower, so I need to sit. Yay for having a wet room!

WRT the blue badge - I've thought about applying for one - but I don't know if there is much point in my case. I'm registered with my local Ring and Ride service, but I don't drive, nor does anyone in my family, so... *virtual shrug* I'm sure I would be entitled to it though. I can't walk very far, and I get HRM.

jennie-jack

you automatically qualify for one here if you have hrm, although like you say if you dont drive or know someone who does there isnt much point having one.

you should be entitled to a free bus pass.

Trialia

jennie-jack wrote: »

you should be entitled to a free bus pass.

*nods* Thank you - I am, and I've had one since I was 19. (Slightly scary to think my next birthday will be my quarter-century!) It's a great help to me, as bus travel here is otherwise very expensive!

ash4becks

jennie-jack wrote: »

i also have heds and it sucks. im 28 and the proud owner of sticks and braces for knees, ankles wrists. it has caused me to fall almost daily for the last year. i tore my cruciate ligaments dislocated my knee. i need a bath chair just to bath and even then cant wash hair. i got a blue badge just in time to have to give up shopping. i can park outside one shop and go in and out but anything that actually requires walking around i just cant do. i panic when i am out that i am going to fall as it is so embarrassing and people seemed to think you are drunk but if i was old and fell im sure people would help and not snigger.

i am having a hard time with meds and pain at the moment and have struggled to get around, even getting out of bed then requires an hours rest. i had to have a medical to get my dla but when the atos doctor came out to see me i was given hrm and mrc.

ash im not saying you dont struggle or anything but if the blue badge is on the hms side i think you might struggle if it is just a flare up as they always make sure it will last 6 months. people have trouble getting dla full stop for hms because it is often seen as double jointed when it isnt.

ok that might be why i failed for the blue badge looking at this thought funny enough her friend has hms, she asked how long ago was i dignosed 2 years ago but was only in my knees then but said flare has started few months ago , she then said it might be better if i apply in 3 years

i was moved to a lower flat for the knees few years back but i dont go in the bath as much as i like because of that darn bath 16 inchs high and no shower another thing on my to fight for list

well i get dla atm on second form receved both times 1st was lrm mrc now lrm hrc, but really looking at what has been going on i think more than just hms just for how long its been going on just looked when i joined was early june was geting bad then iam still bad now , have the spilts for wrists, iam refusing the stick as yet i have my dog to get better for i miss my beach walks with her to much

but i dont no how much you have read two gp's have said poss M.E or fibo but i will mention eds at appointment on 19th i had a eye test few years ago and they said my focus was of due to my musles being weak

didnt get to hydro on fri was to bad but i have the bus pass i wanted the most the blue badge now based partly in princible trailia knows how i mean the haters squad but also would have got me pass without letter of doc

SingleSue

The passing out thing is interesting....that was the primary reason for me taking eldest up to the doctor in the first place, followed by his stretchy skin, the dislocating joints and then finally his inability to keep weight on - he is borderline underweight despite eating in the region of 10k of calories a day to just keep a stable weight, any less and he loses weight at an alarming rate!

After all the diagnostic process, they placed the stretchy skin and dislocating joints at the EDS door but couldn't explain the dizzy spells/fainting and said maybe it was due to the heart murmur they found during the process (they were thinking along the lines of Marfans first as he met a fair few of the criteria) or the weight loss (thyroid fine).

I'm not at the stage of applying for any disability benefits or a blue badge, it's taken me a fair while to accept having to use a stick...that next step is just too much of a give up one for me (just me, not saying others should be the same).

Trialia

SingleSue wrote: »

I'm not at the stage of applying for any disability benefits or a blue badge, it's taken me a fair while to accept having to use a stick...that next step is just too much of a give up one for me (just me, not saying others should be the same).

Honestly, I resigned myself to it with the view that if I didn't, I would be forced to live in shared student accommodation until I was at least 25, if not longer, and I couldn't stand doing that any longer - because since I didn't have a job, all my housemates left all the chores in the house to me, without considering that maybe there was a very good reason I don't have a job. I can pick up after myself, just about, if I do it as I go along; I can't pick up after other, messy people as well. I didn't have much choice. Sharing space was destroying my mental stability, and I work hard to try to keep that as much as I can.

serenity79

Trialia wrote: »

Your passing out - is that dysautonomia related? I'm told that can crop up with HEDS, too, though I don't know if it does with me (I have lousy blood pressure and plenty of near-fainting spells, but not diagnosed as anything in particular).

Yes, I was told I have autonomic dysfunction the same time as I was diagnosed with HEDS, I'm currently undergoing more tests to see if it's Postural Orthorstatic Tachycardia Syndrome (POTS) which is what Professor Grahame suspected it to be.

If your blood pressure drops when you get up or your heart rate rises (what happens to me) you could certainly have some form of dysautonomia. Might be worth getting that looked into further.

serenity79

SingleSue wrote: »

After all the diagnostic process, they placed the stretchy skin and dislocating joints at the EDS door but couldn't explain the dizzy spells/fainting and said maybe it was due to the heart murmur they found during the process

Sue, has he ever been checked for Mitral Valve Prolapse? This can be an issue for people with HEDS.