not looking disabled?!

mitchyjules

Trialia wrote: »

That is exactly my problem, yes. Hypermobility type too, I take it?

I use my walking stick(s) around my house, but there would be no room for me to use a chair even if I could self-propel a manual chair, and I live by myself, my carer is only here an hour a day.

Yes - i'm type 3 too! There was a query of being combined with type 4 due to bleeding problems in the past - but never investigated further!
There aren't a great deal of us in the country - so it's nice to meet someone in the same boat!
Have you had much help from OT regarding adaptions to your home? Must admit - mines a bit useless, but i expect that's because she knows nothing about EDS. Not many health professionals do!
You're lucky to have a carer. I rely on hubby & kids to help when i'm having a bad day...but seeing as how he also has a disability it's a bit like the blind leading the blind!

starchild1972

mitchyjules wrote: »

Yes - i'm type 3 too! There was a query of being combined with type 4 due to bleeding problems in the past - but never investigated further!
There aren't a great deal of us in the country - so it's nice to meet someone in the same boat!
Have you had much help from OT regarding adaptions to your home? Must admit - mines a bit useless, but i expect that's because she knows nothing about EDS. Not many health professionals do!
You're lucky to have a carer. I rely on hubby & kids to help when i'm having a bad day...but seeing as how he also has a disability it's a bit like the blind leading the blind!

LOL in our house it's the hobbling being led by the wheelie. (FMS/HMS [?EDS] mild M.E. & DH is CRPS & M.E. & "summatelsebut don'tknowwhat")

FleurDuLys

I have EDS too, the vascular type crossed with the hypermobility type, though the hypermobility doesn't affect me as severely as it does the both of you. It has caused serious spinal problems that I've had a lot of surgery for since I was a baby, I've developed POTS which is controlled by steroids, and I have splints for my hands and orthotics for my feet. I have my heart scanned every few months (VEDS runs in my family, my great grandfather and gran both died of complications) and I take a lot of painkillers anyway because of all the spinal surgery but I manage quite well I think.

Trialia

Jules - my OT doesn't do adaptations to my house per se, but she has given me some joint braces and a claw, and instructions on what physical movements to avoid. The council's "reablement" service brought me a high chair with arms to get into and out of more easily, along with a couple of perching stools and a shower chair for the kitchen and bathroom. Actual house adaptations were mostly already done before I moved in, but they did add a couple of rails for me. As for being lucky to have a carer, she's only here an hour a day, most days - I live alone, so any problems I have the rest of the time, I don't really have help with them.

Fleur - I have spinal problems, too - double rotational scoliosis, to be exact. Two twists to the right, thoracic and lumbar, and my vertebrae like to try to subluxate quite often. I'm under orders not to lean forward past 45 degrees for just that reason. But because it's rotational, they can't actually operate on me to fix it, because it would make things worse. I also have nerve damage in my lumbar region from a nasty fall a few years ago. Like you, I have a splint/brace for hands - mostly for my dominant hand - and am on lots of painkillers. I wear boots all the time to help support my ankles, and on and off a corset that helps with my posture, which is almost kyphoscoliotic due to pain and twisting. My dad's had 3 heart attacks already, so they keep an eye on me, and my blood pressure shows signs of dysautonomia, too. Not quite POTS, but similar. So much of it comes with EDS!

Isn't this condition fun, eh? =P Not!

That said, funnily enough, I run into more 'bendies' online than I've ever known in person. There are, at a statistical estimate, about thirteen thousand of us in the country - and I find we tend to congregate around cities that have a specialist. *g* Like mine.

shays_mum

Trialia wrote: »

Jules - my OT doesn't do adaptations to my house per se, but she has given me some joint braces and a claw, and instructions on what physical movements to avoid. The council's "reablement" service brought me a high chair with arms to get into and out of more easily, along with a couple of perching stools and a shower chair for the kitchen and bathroom. Actual house adaptations were mostly already done before I moved in, but they did add a couple of rails for me. As for being lucky to have a carer, she's only here an hour a day, most days - I live alone, so any problems I have the rest of the time, I don't really have help with them.

Fleur - I have spinal problems, too - double rotational scoliosis, to be exact. Two twists to the right, thoracic and lumbar, and my vertebrae like to try to subluxate quite often. I'm under orders not to lean forward past 45 degrees for just that reason. But because it's rotational, they can't actually operate on me to fix it, because it would make things worse. I also have nerve damage in my lumbar region from a nasty fall a few years ago. Like you, I have a splint/brace for hands - mostly for my dominant hand - and am on lots of painkillers. I wear boots all the time to help support my ankles, and on and off a corset that helps with my posture, which is almost kyphoscoliotic due to pain and twisting. My dad's had 3 heart attacks already, so they keep an eye on me, and my blood pressure shows signs of dysautonomia, too. Not quite POTS, but similar. So much of it comes with EDS!

Isn't this condition fun, eh? =P Not!

That said, funnily enough, I run into more 'bendies' online than I've ever known in person. There are, at a statistical estimate, about thirteen thousand of us in the country - and I find we tend to congregate around cities that have a specialist. *g* Like mine.

Hi Peeps,:hello: another EDS3 bendy here!! -FM,Autothingy,high blood pressure & gall stones, still awaiting Chiari checks. I visit the HMSA & EDS forums & you will find the people there are great!

Trialia

Yep, I'm on both forums already. I have EDS-3, FM, autonomic dysfunction, bipolar disorder, asthma and am mildly Aspie. Among all the little friends that come with the first two...

FleurDuLys

Hey Trialia! Rotation shouldn't prevent surgery for scoliosis, though the instrumentation they used a few years ago couldn't address rotation which may be why they told you this wasn't fixable. Also, in order to have surgery your scoliosis usually has to be above a certain degree. All scoliosis curves rotate as well as curve, but some rotate more than others. Modern instrumentation attaches to each vertebra and derotates each one in turn, untwisting the spine, and I know people with extremely severe deformities who have had successful surgeries. I'll PM you, maybe there is stuff that can help you.

I grew up wearing plaster body casts and Milwaukee braces and had my first set of surgeries when I was ten, with a rod which couldn't address the rotation (though I had a huge amount of it). As I'd had a severe deformity since I was a baby it had prevented one of my lungs from developing properly and the curvature was getting worse and causing more damage, so I needed to have surgery to stabilise it. I had more surgery at 18 and 25 and again two years ago, and I've had two surgeries to reshape my ribcage since the rotation caused a large rib hump deformity. It all looks fantastic now though I have most of my spine fused with just two vertebra at the bottom that can move. Being hypermobile is cool because it means I still have a decent amount of movement despite this, my hips compensate for it and I can still touch my toes!

I have nerve damage from all the surgery and take Gabapentin, cocodamol and morphine when I need it. I have been very lucky though, I worked full time until I took voluntary redundancy two years ago and never needed to claim disability benefits. I wanted to change careers to do something more active (sitting all day killed my back), but then I was diagnosed with a benign brain tumour so I claimed Contributions-based ESA whilst having treatment (taking the opportunity to study and train whilst I did so) and then I got diagnosed with b****y cancer just as I was being offered jobs, so now I am on DLA and ESA and it's very frustrating. Am still studying though cos I haven't given up yet!

Fleur xx

Trialia

Perhaps! This was a few years ago they told me that. That said, surgery when you have HEDS and fibromyalgia is never really advisable unless the problem's going to cripple you all by itself, or so I'm told, and this isn't - the EDS and fibro are bad enough by themselves for that, but even recently it was said to me that my twists are minor enough that, given all my other physical issues, it probably wouldn't be a good idea to have it done. The only major surgery I've ever had was also orthopaedic and it failed, so...yeah. Thanks, though, please do feel free to PM me.

*nods* My health - physical and mental - has been getting worse since I had a nervous breakdown at 16. I was in college part-time for several years, but I finally had to drop out after I was down to three hours a week and still couldn't handle the physical burden of it. I've been on DLA since age 18, IB since age 19 - while I was still doing part-time at college, but couldn't handle anything more than that thanks to chronic pain and fatigue. I'm 25 now, and due to be migrated to ESA in this shift they're doing soon. I'm on morphine, oxycodone and amitriptyline, among other things. I have to take my pain meds every day, or I'm just not close to functional. It's frustrating - I have lost a lot of my life to these illnesses, in little bits and pieces, so I'm trying as hard as I can to cling to what I've got left. I won't give up that easily. And good luck to you!

FleurDuLys

I have PMed you I had to have surgery because yeah, it was crippling me. I had a lot of problems during the first surgery though, due to excessive bleeding, and they've had to be very, very careful ever since. Surgery is generally only advised for curves that are above a certain size and are likely to continue to progress during adulthood and cause respiratory problems and large deformities, but there's an annoying lack of NHS help for adults who have smaller curves that hurt a lot but aren't going to cause damage.

Although I've had scoliosis all my life I was only diagnosed with VEDS two years ago, when my cardiologist put all my symptoms together and sent me to a rheumatogist to get assessed for a connective tissue disorder. Bleeding/bruising/POTS/scoliosis/hypermobility/flat feet etc etc....heh. I knew my great grandad had died young of a heart problem so I got his death certificate and found that he died of aortic dissection, and then my gran did too....my mother is really hypermobile and this has come through her so I am worried about her but she's in denial. The rheumatologist diagnosed me with VEDS and also with Fibromyalgia, though honestly I think the pain I get is probably due to all the spinal surgeries (eight of them) so I don't count myself as having it.

We just have to do what we can to keep enjoying our lives don't we!! All of the above means that I've been able to cope quite well with the cancer diagnosis though, I think. It's just another little annoyance to deal with. Lots of love and best wishes to you Trialia, I hope you can live life with as much enjoyment as possible :beer:

QuackQuackOops

adviceforall wrote: »

But surely if your in a wheel chair then you dont really need to be near as possible to the shop ( or where ever you are going) as someone who has to struggle walking as you are sitting down and possibly being pushed by someone able bodied.????
( the only exception is if your have to wheel yourself and you struggle with pain in your arms/shoulders)

Wow! What a narrow view of wheelchair using.

How about needing the extra space a disabled space gives you for getting in and out of the car in the first place?

Of course, there is also the problem of getting all the shopping and the wheelchair back to the car. Not easy for the carer if the car is a long way off.

Also, a lot of disabled spaces are not near the entrances.