Disabilities

[paddyandlin]

I was just wanted to ask how many people have a physical disability for example wheelchair user lost of use of arm leg and was it caused by the APS?

[MaryF Administrator]

I have flare ups which cause loss of hands and feet and also other things..including hip flares ups which stop me walking for a while, spinal flares once a month etc,. but have an overlap due to Psoriatic arthropathy and sjgroens. However like a previous post by a member, having had dvt's in 1989, like my two sisters when pregnant,... despite being in St Thomas, for months, and living locally, I was never told I had Hughes, but probably because I test negative, however clinical history of extreme balance problems, dizziness, reaction to contraceptive pill and migraines in childhood, also cerebral fits and admissions for suspected meningitis... although never conclusive. I presumed that this was just something that happened when pregnant, being on here, having found my way back into the system via London Bridge.. a lot of puzzling questions have been answered. However despite my referral now, after no care for so many years, back to St Thomas' the matter of my two youngest children is still being ignored, despite serious migraine, and other symptoms.

So in answer to your first point. My physical disabilities are extreme when they happen, but they do calm down again, however I always have sore joints and pain.

However I have always since 1989 taken asprin for three days before and after any long journey, also when out of hospital after an operation due to be naturally suspcious, (my mother and two sisters trained nurses etc etc).

I have also always followed a healthy diet and done daily exercise unless totally forced into being in bed for for a few days. My physio, supplements and diet have probably helped me stay mobile, and I know I am very lucky.

Mary x

[SharontheSheep]

I can not walk unaided. I use a frame with wheels or sticks and never go out alone. This is due to pain, fatigue and balance problems. Also I get very confused and disorientated when there's alot of noise (like a shopping centre) and if it's too bad I can forget where I am or how to get home. I can't use public transport due to the above so am reliant on hubby (for everything - he is amazing). At the moment I have a lot of focus and double vision problems which add to the whole desire to be reclusive. I do recived DLA and have been like this for 3 years.

[jessielou]

Hi paddy.

Although ive struggled on for a long time, being stubborn and mule-headed, ive recently given in and used a stick, wheelchair and mobility scooter because of pain, numbness in feet, fatigue and dizziness. Caused by i assume mixture of Aps, fibro and sle.

I never realised until using the scooter how much i was holding family back, we go out nearly every day walking dogs. We went legoland last week and managed 2 full days, would not have managed without scooter. So in the words of William Wallace 'freedom'!!! Its given us all a life back, so no more embarassment. I Dont care, we having fun!!!!!

Hope all well. Take care. Gentle hugs love Jessielou x x x x x x x x x

[Herb]

I have got hemiplegia (diagnosed 1995 but developed before that) but I am not sure whether it is caused by APLS or Lupus as none of us seem to be able to disentangle the 2 in my case. I had an NHS walking stick but swapped it for a sporty sprung hiking pole from Nevis Sports as I got a lot of negative comments from the older generation on the walking stick. I have a lot of difficulty with steps and uneven surfaces but the hiking stick gives me a lot more stability.