Using a wheelchair part-time - unsupportive family

Han_

Hi everyone! 

I wasn't sure where to post this so I decided to post it here.

I have been suffering from fatigue since January this year. Initially, I was house-bound for a month or so. Eventually I was able to walk out to the car and go for a short drive. Slowly, over the months I managed to build it up so I could walk a little with regular breaks. This has all been very difficult and it has been more of me getting used to the fatigue rather than just getting better. I have managed to get a referral to see a CFS specialist but the next available appointment is in January 2018. 

I spend most of my time at home, going out for an hour or so a few times a week. I find it very difficult to walk. I have started strongly considering using a wheelchair part time to help me with all of this. I have brought it up with my family once in regards to a holiday and it wasn't received well. Ultimately, I believe it is down to them thinking I will get better and I just need to try more, it was also said that they would not be able to see me in a wheelchair. I am financially dependant on them so I really do need their support. I can't go out without someone driving me. I am quite young and am feeling very isolated. I am quite anxious to bring the topic up again. We wouldn't be able to afford a wheelchair (i'd need to use a powered one) and I do not think I would qualify under the NHS so I would use shopmobility and hire whenever I can.

This has been on my mind a lot this week as I have barely been able to leave my bed due to over-exerting myself on the weekend.

I apologise for this lengthy post but I have no where else to turn to for help and advice. 

Thank you for you time.

CockneyRebel

Hi
You have come to the right place, sometimes we just need to talk and unload our worries.
It is good to keep trying to build yourself up but sometimes you have to accept that a little help is needed to try and maintain your independance. If that means you need to use a wheelchair or scooter then that is your decision and no wishfull thinking by your familly will change what you need. You say that you are dependant financially on your family, have you made a claim for PIP or any other benefit ?

steve51

Hi @Han.
A very warm welcome to you don't worry about the long post that's what we are here for.
Can you please let me know if/what benefits are you claiming if you don't mind ??

Han_

Hi @CockneyRebel and thank you for your lovely message - it means a lot. Yes you are right, the reality is that I struggle immensely with walking so I need to help myself. 

Hi @steve51 and thank you for your welcome.

To answer you both, I don't claim any benefits.

CockneyRebel

You are very welcome
I know the problems of limited mobility and fatigue so understand a little of what you are going through.
Without wishing to pry, a little more information about you and your situation might be useful in pointing you in the right direction.
Do you live with family or partner ?
Do you/have you worked ?
Apart from the referral, has your GP given you any other support ?
Other than walking do you have problems with everyday tasks that you need help with ?

A claim for PIP may be a good place to start. The process can be harrowing but if successful would give you some financial help toward mobility

Han_

@CockneyRebel

No worries, I'll let you know if I'm uncomfortable answering any questions.

I live with my family, am dependent on my mum.
I have never worked, I got ill during my first year of university.
No my GP hasn't given my any support and I had to insist on the referral. 

Would you mind giving me some examples of everyday tasks?

I have heard how difficult it is to claim and some of my family members have had a really difficult time with the benefit system. It's even less likely that I'll have their support with claiming. Saying this, I will look into it and keep it in mind.

---

As a general update, some good news. I spoke with my mum about using mobility aids and although I had to really fight my corner, I got her to agree to let me use shopmobility. 

CockneyRebel

I am glad you got a bit of support from your mum. I can understand your familys concern about your mobility at such a tender age
PIP is  a two part benefit,  comprising care and mobility for which points are award depending on how you manage certain activities. a good place to start is by taking a self test to see if you might qualify

Han_

@CockneyRebel

Thank you! & ok good idea, thanks for the tip. 

CockneyRebel

Do come back if you need more support or just to talk. let us know how you get on there are many people here to assist

Han_

Well the whole support thing just backfired. Ugh. 

CockneyRebel

What happened ?

steve51

Hi @Han_

I have just read there the posts to date please please let me know if I can help you in anyway ????

janice_in_wonderland

I have CFS/ME/Fibro & other conditions etc I've never had anyone to push me in a wheelchair so I'm either housebound or v careful with what I'm doing - I am scared my ESA is going to be taken away following an assessment 10 days ago as they have stopped DLA/pip - if anyone can help please message me - I'm v nervous atm

steve51

Hi @janice_in_wonderland
I love the name !!!!!!
I am so sorry to hear about your current situation.
Please have a good look at our home page.
You will find lots off info on benefits.
We have got a .Benefit Advisor' which shloud be hepful for you.
Please please let me know if I can offer you anymore help ??????

Liam_Alumni

Hi @Han_,

I'm sorry to hear about the problems you've been having. It sounds like a really tough time.

As @CockneyRebel mentions, it may be worth applying for PIP when it comes to financial support. We have a section on our website dedicated to Personal Independence Payment that might be of interest to you. We also have a lot of information about finding a wheelchair, which you might find useful.

I hope this helps. If you have any other questions, then please do get in touch!

Liam_Alumni

Hi @janice_in_wonderland,

I'm sorry to hear about your claims and the stress this is causing you. With regards to your DLA/PIP claim, have you asked for a mandatory reconsideration?

Fificakes

You can hire wheelchair from Red Cross as well. Is there AYME or any support groups from the ME  association? They really helped me cos it so disabling and pacing is hard to do.

Han_

Hi everyone, I apologise for my absence. Thank you so much for messaging here, means a lot. 

I can't remember exactly what happened if I'm honest (brain fog, eh?) but generally have been told by family to not use a wheelchair and do what I am capable of which is currently attending one appointment a week and maybe going out for a drive once or twice a week. So I'm pretty much housebound and very very frustrated. I have used shop mobility once and still found it exhausting but the outing would have been impossible without the wheelchair.

I guess using shop mobility is one step forward but I have a long way to go until they support me wanting to get my own wheelchair. I've decided to give it until the new year (my one year fatigue anniversary), if I can wait that long, to bring it up again.