New to this part of Mse.

lostinrates

Thank you malebodge.

I think you are understanding exactly how things are. I've been unwell for about ten/eleven years. And have actually made tremendous progress in the main. . I have focused mainly on the progress and how I have found my way around things I cannot do and the 'success' of evasion and interpreted as 'achievement' wholly, rather than just evasion. I have had a few dips. But a dip about 8? Years ago and another two ish years ago have been possible most significant. I think the most recent one has really 'knocked the stuffing out of me' as much as anything and I am feeling my limitations more. In many ways I continue to make progress. ( I very rarely use a walking aid) in others I don't ...I rarely go out that far alone, so there is little use for a walking aid, because I don't walk far enough, long enough, and the days between outings are vast, as recovery time can be significant.

I AM hugely reliant on my husband, though he is not here mon to Friday. He works hard all week, then picks up the slack here at weekends. One of my parents moved in here which was meant to be mutually beneficial as it was clear I was not coping very well practically ( I'm not meant to bend, lift heavy things, do things like vacuum) but actually my parent is not proving very helpful often and in some cases even stressful. Though in many cases is wonderfully helpful.

I think both my DH and I feel quite ....like we don't know what to do for the best sometimes.


I am so terribly sorry for your loss. Thank you for your time and help.

Better_Days

Hi LIR :wave:

I went through similar thought processes when we were considering purchasing a powered wheelchair.

For a long time I didn't really appreciate how poorly I was because my functioning had deteriorated slowly over a period of 5 years.

Two incidents, both with HCP's helped me face reality. One was at the ME clinic and I was talking to the OT about going back to work. She sat me down and basically told me, very nicely, that I was far too poorly, couldn't multi-task, and had a long way to go before even a few hours a week could be considered. The other was with my GP. I had sent her a copy of my DLA application form. When I next saw her she said she was horrified when she read it. She hadn't appreciated how limited my functioning had become (because she only saw me when I was well enough to venture out), and even though I had written it all down on the DLA form, I hadn't really processed it.

Spending in the region of £1,500 on the powered w/chair made me face up to my physical limitations. I was very disappointed that I couldn't use a scooter (unable to hold my arms up on the handlebars) because I felt more 'disabled' using the powered w/chair. For me that was really difficult to get my head round.

But, I'm glad I did. For the first time for many many years I wasn't crawling along at a snails pace, totally exhausted before I even got to where I was going. So now, when I am well enough to go out I can actually enjoy the trip. Earlier in the year my brother and his family visited and we went for a long 'walk' round the grounds at Ickworth House. It was a beautiful October afternoon and I will remember for a long time. I was only able to go 'independently' because I had the powered w/chair, and having the BB meant we could park nearer.

Many times I am not well enough to use my powered w/chair, stick and BB. But that is the nature of a fluctuating condition.

I don't even use my BB once a month. This time of year I tend to be more poorly, and may not use it for a couple of months. But I don't see that as a problem. There always seem to be a shortage of BB spaces, so if I'm not using the space then it is available for someone else who needs it.

If you don't feel you need to use the BB on a particular day because your symptoms permit, then you don't have to. But, if a BB would make things easier for you on a day when your symptoms are causing real problems with functioning, then taking a practical approach - why not make life a bit easier for yourself? Why risk exhaustion, pain and exacerbated symptoms and limited quality of life by pushing yourself because you also have days when things are not so bad?

If your GP has suggested the application then there is no doubt in his mind. I hope that your application is sucessful, and if it is - use the bloomin' thing when you need it

M00minMama

Struggling without a badge is making the whole experience of going out negative for you. That will make you more isolated. Having a badge can encourage you to go out on more days than if you have to walk long distances.

Lots of us here don't 'feel' disabled because we have a blue badge. If you get one and use it as an enabler it can be great!