Mourning not being independent

[CPandme]

i have cerebral palsy so find some stuff harder and poor sight so can’t drive.

Something on another thread got me thinking about need for independence even in small things. (Didn’t want to derail that thread.)

it was about a buffet at a wedding and a poster saying that someone would get food for a disabled person if they can’t access. I want to be able to pick how much of X or Y rather than what even a close relative picks for me. I want to be able to hop in the car and go at my time not late because of public transport or relying on a lift or taxi that just may not arrive

I know it’s niche issue there are many people with and without disabilities struggling to get food or afford transport at all.

Does anyone else recognise this want to be independent?

My Tiitle “mourning” may be wrong word, I’ve always had the disability so not mourning loss of something as such - I don’t know what word covers it.

Bumping this. I’m wondering whether there are that many MNetters with disabilities.

@CPandme Not sure if you are still watching this thread but thought I would reply just in case!

I get it. I have only been in a wheelchair for 18 months and everything is so much more difficult. I do drive but find hoisting my chair in and out of my car exhausting and my privately bought wheelchair is uncomfortable and leaves me in pain after a couple of hours use.

I am struggling to keep my family and social life going, failing to find a job and get very low moods sometimes.

It is hard

Sorry it's long. Yesterday made me realise I am not independent anymore. It came as a shock to me because DH has been helping me and compensating for my lack of mobility. I had a ticket for Commonwealth Games cricket at Edgbaston. I have been so looking forward to going. DH and son set off to see basketball in different location. Before setting off I looked at where I could park and catch shuttle bus but was shocked to find parking was about 600 metres from shuttle bus. I have been so used to DH dropping me off directly outside of places then going off and parking then coming back to meet me that I have not noticed how little I can walk unaided. After he had set off I sat down to look at trains and shuttle buses but even on train I would have needed to walk 400 metres to shuttle bus then shuttle bus drops about 500-600 metres from stadium. I know I can't walk this far even if I had a mobility aid which I don't. I had to stay home and miss my event. I just sat and had a little cry with frustration. Today I asked DH to walk with me in park to see how far I can walk on my own. I chose park as many seats. I have no idea about distances but DH said about 30-35 metres before I had to sit on seat. After 5 mins I could get up and walk a bit further, another 30 metres, then sit for 6 or 7 minutes. Then a further 30-35 metres. My back was burning with pain at this point. We had to sit for an hour before I could go back sitting twice on the way again. It has dawned on me I might be able to apply for a blue card. Over last 6 months my arthritis in spine must have got worse. I have been avoiding pegging out washing, and I can't stand in kitchen to cook a meal anymore but I have been masking I think by asking my adult son who lives at home but is moving put in April to peg out washing and cook one meal a week. I have been ordering in Chinese takeaway and on a different night get son to fetch KFC and get DH to cook other nights. I also struggle getting in and out bath to shower. I only ever shower when DH is there to hold my arm and help me in and out as I am afraid of falling as my balance and flexibility is poor. Now I just feel useless. I can't walk my dog anymore so DS does it sometimes and DH other times. I can't vacuum as it hurts my back to stand for more than a few minutes. I have been having a cleaner once a week to do vacuuming and cleaning kitchen. I have been going up stairs on hands and feet for months. I can't go shopping as can't walk around whole shop. If DH can park close I can lean on trolly and manage about 1 small isle, then I can't queue at checkout as back worse when just standing so DH queues to pay. My sister rang tonight to invite me on holiday for a long weekend with her in Brugge. I have spoken to my sister on phone, and cried, and admitted how bad things have got and she says I should apply for blue badge and pip. I just feel so sad that I won't be able to be as independent as I used to be. I'm not sure if I would qualify for as blue badge and pip but I am going to ring my GP to discuss. Has anyone else been through this? What do you think my chances of getting blue badge are? If I had one yesterday I could have parked inside stadium. How long does it take to get a blue card?

Another one here who isn't sure you are looking at this still, but thought I'd reply anyhow.

There is nothing wrong with wanting to be treated like an adult, not a child, however I've learnt to accept I can't always be. Either because of my disabilities or general access. It sucks.

There are many people in the country facing similar issues, however lack of access due to funds isn't the same as disability. A mobile lower earner for example could walk, or access more forms of transportation than someone requiring wheelchair accessible transport or support from another.

You can be hard up & disabled at the same time remember, the double whammy.

Unfortunately I haven't found a solution, but I feel your frustration. The best I can offer is focusing on what I can do rather than what I cannot, which is easier said than done.

@caringcarer You will definitely be eligible for a blue badge and PIP. Your GP isn't the best person to advise on that one. For PIP you need to talk to someone like CAB or download guides from Benefits and Work. Blue badges are administered by the local council and you apply online. My assessment took about 4 months.

I agree it is a shock to realise how little mobility you have. My mobility is not as bad as yours but I end up not doing things where there is walking involved because I know I will just end up in pain. The blue badge makes a big difference.

Like worriesaboutalot I'm fairly new to all this disabled stuff, I'm still trying to get my head around a lot of it. Being disabled has turned me in to a recluse, the only times I've been out of the house is for medical appointments. I'm still at my mum's but am desperately trying to get a move from my flat to a bungalow, I need a wheelchair but haven't plucked up courage yet to ask to be referred. I'm terrified about being stared at when I start using one, I'm autistic & find it hard when anyone pays me any attention. Ds who is my carer is in a relationship now & talking about leaving home, I'm really worried about my future.