So true. I feel your pain. I won’t qualify for ocrelizumab either. I’m lucky in that I’ve moved from DLA relatively painlessly. I had to give up my driving licence and any pretence of independence ten years ago.
We’re also lucky in that we’ve got good occupational pensions, but this is not money for nothing. We’ve worked for many years and paid a hefty amount into the pension schemes.
This disability malarkey is expensive, very expensive.
Firstly there was the expense of moving to a bungalow, then there was the adaptations which have cost thousands.
Alterations at the front door and access ramp.
Alterations at the back door, raising the level of the conservatory floor to get rid of the step down, but we can’t afford the ramp just now, so I can only use the front door for now.
Alterations to the bedroom so that I can get a wheelchair all round the bed.
Wheelchairs, the first one was a mistake, too heavy. We’d no idea what we were doing and got no advice. The second one was better, and I got a £250 voucher from the NHS towards it. Then to try and make life a bit easier for my husband we bought a lightweight attendant push wheelchair, not so heavy for him to lift in and out of the car. Finally a powered chair, so that he doesn’t have to push me everywhere (I don’t have the strength to self propel) but that has meant the expense of buying and running a bigger car, and having a hoist fitted so that we can get the powered wheelchair in the boot.
The community OT provided a perching stool, and the physio a pair of crutches.
I pay in full for help from carers four mornings a week to take some of the pressure and burden of care off my husband.
None of this is going to make you feel any better, and I apologise for that. Your thread has given me the opportunity for a rant!