Please could anyone help me get mobile,I have a car that can take me to doc chemist ,and over to the beach,for 2 yrs now I can't walk more than 10 steps,I feel awful when I'm out can't concentrate I feel ill,oxy levels drop,I'm a n energetic person with strong legs ,but it's my breathing and I really love being outdoors,I can't lift heavy things I need somthing I can ride over the grass to the sea and ride along instead of walking,as I would walk all day,I'm getting depressed as my oxy levels are not low enough for oxygen with their new machines that are 4 digits higher than the hospital even ,so suffering is all I can do to maintain a life worth living . I'm not sure my leg muscles are up t o it on their own ,I have got reconditioned as I've always been muscular type ,good body and health, lightweight and small as possible,even folding. Money is no object,my life is more important ,thank you in advance,
On a happier day towards the future. - Lung Conditions C...
On a happier day towards the future.
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Hi Colours, there are so many amazing mobility scooters nowadays that maybe one would be good for you. See what you can find online perhaps. Anything to help get you out and about again especially with better weather on the way.
I do hope you find something soon. Wishing you well and hear from you again with good news. xxxx
Hi Colours, Im coming in from a difference angle on becoming mobile and apologise in advance if this isn't relevant for you, but has anyone talked to you about pulmonary rehab? Its an exercise and education course run around the country for people with lung conditions. Most people can improve their mobility and what is good about the PR courses is that they start you from where you are.
Sorry if you've already discussed this here - i missed it if you have done. But it sounds like you might have the potential to benefit from PR. You could talk to your GP about it and s/he would refer you.
Hi O2. Good advice. I couldn't get on my local hosp PR course as the physio said my Ehlers-Danlos Syndrome (JHS) may be aggravated by the repetitive type of exercises they do (ie knees, squatting, such things...) I do have very fragile knees and ankles, etc and I took her response quietly but I feel I am missing out. stillmovin1
Gosh, did we speak about EDS before stillmovin1? I did with someone here and sorry if Ive forgotten that it was you! I have it too, JHS is EDS 3 isn't it.
I can't do many squats either (that's also due to abdominal prolapse which is part of the EDS too) but they give me something else to do instead. Sit to stand is a bit dodgy too for same reason.
When marching on the spot my knees feel like they are going to come apart - when i was very little i had to have my knees splinted with bandages to stop them wobbling about. It kind of worked but they look weird now, sort of knobbly. They often feel very loose, and my hip subluxes sometimes, but i think I've got off lightly with it as i don't have much pain. I had good physiotherapy for it too.
Its a shame they can't accommodate you, stillmovin. Is there other exercise you can do? Swimming any good?
Hi O2trees, yes it was I that had the chat about EDSIII. I fully understand your problems! Repetitive movements can be a nightmare for me but try explaining that at these face-to-face medical assessments when you need welfare benefits! They look at me and see that I am very agile and don't believe me, as well as never having heard of Ehlers-Danlos III. I would love to swim but, I took swimming lessons a few years back and was just advancing when I somehow got tennis elbow in one arm and golfer's elbow in the other! That's Joint Hypermobility Syndrome for you! I had to stop, as swimming affected both elbow joints! I do like to walk but my current problem is breathing and it is becoming worrying for me. I don't want to keep taking antibiotics and I am putting off taking my stand-by supply. However, things aren't improving, so I may be foolish not to take them. I think I have an infection but it has been like that for most of the winter and I have already been on two doses of antibiotics some weeks ago. As for Pulmonary Rehab, I would like to go but not to the hosp where the physio said she couldn't take me due to EDS. That isn't a good start. How would I get referred to Royal Brompton, do you happen to know? I live in Dartford, so it's far, but I hear it is very good for respiratory problems. stillmovin1
No i don't know stillmovin1. I looked up the previous thread and saw it was you who i had the EDS conversation with. 
Maybe you could ask your GP for a second opinion and say you'd like it from the Royal Brompton - it is a premier pulmonary hospital.
Some physio teams you can call up yourself without a referral so maybe you could try that. They won't take you without one but might talk to you about the EDS problem.
And of course you could call the BLF helpline
03000 030 555
Good luck and let us know x
I did abit but so breathless ,they only take people tha t are well,not the best area to live in so lots of other problems ,im here to look after my mum,lol. So It's not my kind of area to live ,to far away from me I'm not well enough to travel no a lot help in this area!
Hi colours I like O2tree's thinking. Could you walk inside or up the stairs, a few times a day? Do a little bit more/faster each day? Could you try and build up your stamina and muscles that way? Just a little bit a few times a day and then a little bit more each day? I wish you all the bestxxxx
jenss is right to suggest this Colours - we can all build up even from just being indoors. If we don't do any exercise then our muscles get deconditioned and its even harder to exercise = vicious circle.
Colours, you say you are so breathless - do you think you are on the right medication? Maybe a chat with your GP would be a good idea. Its such a struggle to be breathless all the time, as you know. Most of us have varying degrees of breathlessness but if yours is preventing you from doing PR and walking outside then it sounds like you might need a review of your medications.
You like to be outdoors and while a buggy may help, especially for longer trips, i can't help thinking its not the whole answer. Please don't accept that nothing can change - if you can walk 10 steps now, then make it 11 today, 12 tomorrow.
Sending you the best of luck xx
Depending on where you are in the country, these large mobility are available for daily hire.
johnwr
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Don't know what to do or think 
not coping
Good news, bad news? 
Nearly a Day on the Beach.
Cold temperature - on a serious note
