This is not meant to be a downer, but welcome to the world of the Greenwich NHS trust!
Over 2 years now and there is a sort of agreement that I may have Ataxia or it might be peripheral neuropathy or maybe the worst cold ever as my own mum was hoping for.
Sorry that was my total sarcasm, my latest visit to the hospital was with a junior doctor as my consultant seems to have skipped town, and I have defiantly got worse and am waiting to have the electric shocks through my legs again to prove what I already know.
In fact the first time I had that I was diagnosed with Ataxia so I promise you I am not a fake.
But, they are not bothering to try and find out if my condition comes from genetics or through some sort of dodgy substance; I promise if it is a dodgy substance it is not of my doing! I actually brought up a few ideas as I do live in a very old house but the sarcasm that I got back I should probably be going back to kinder garden, which is even sadder as I never went!
I do like to vent sometimes if that is ok with anyone that reads this.
Positive note I found out I am entitled to a government grant to help me fix up my house, which actually I am grateful for, so if you have not checked this out yourself yet, then please do. It seems that this in not just my borough, but because we are disabled then we can get a £5,000 grant for home improvements and then if it goes over that you can get an interest free loan. If like me you are living totally on benefit the loan is only repayable if you sell your house within 5 years.
On the upside of my life I had a fantastic barbecue with my whole family and lucky for them I did none of the cooking!
Anyway please check out the grant side as us that actually do own our homes sometimes get a bit neglected!
Denise xxx
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DeniseLB
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I was hoping someone would pick up on that, but I am on a waiting list, but found out they will survey your whole house and take it from there. In my area it might be a year before I see someone, but the big upside is they have nothing to do with the DWP so they are really nice people to talk to.
Thank you for that, but I think we need to send out a message to those that are still coming to terms with this, I actually spent nearly a whole year crying and dealing with the DWP almost sucked the life out of me, I wish I could do more any ideas?
I certainly recognise your "fed upness". I was hospitalised 3 years ago with balance issues and the most horrendous neuropathy, pins and needles all over, especially my legs. Had all the usual tests and nerve conduction studies. Nothing came to light. My neurologist at the time dismissed it (and me) saying it was common inferring it was anxiety based. I was followed up but then referred to the Pain Clinic, who were very helpful.
I have now moved to a different area, to a different neurologist, who has now diagnosed Ataxia. Had a lot more tests inc. lumbar puncture, and see here again next month. My mobility has decreased, using a stick mosr of the time and now a mob scooter when needed. I only have to go a short distance and the fatigue in my legs is awful. I still don't know what is causing it and find it very frustrating. I think I am one of those people who want to know why as maybe I can then come to terms with it better. I can't blame any of those 'dodgy substances' either. Also it is scary not to know where this is going.
Sorry if I have ranted on a bit and I hope you get the grant to sort your house improvements. On a different tack, I worked in Greenwich for about 10 years. Good luck.
My mind ran riot when I read about a grant, so I looked for further info. I clicked on this link and then read some applications were 'on hold' at the moment😏 nihe.gov.uk>grants_available
Home Repair Assistance Grant/The Housing Executive
🤔xB
Only mandatory work is going ahead due to cutbacks
Oh well every little helps, I might have to wait for a year and still had to pay out another £200 to fix my roof, but at least if you put your name down then if funds become available then it is worth a shot. Anyway hope you are doing okay, my family barbecue went pretty well and it did not even rain and I really did none of the cooking! I really did warn them in advance.
😏Our roof could do with some TLC, I hate the thought of my husband going up a ladder🙄 But, it's good to know grants haven't stopped completely. I hate the thought of searching for reliable tradesmen, it can be such a minefield😏 And, the cost🙄 We've been lucky over the years in that my husband has been able to deal with most things himself but inevitably things change as you grow older. The very last thing we need is for him to be incapacitated. Yesterday, I joined him for an assault on overgrown ivy etc at the far end of our garden. 😳I'd never been there for months (at least) and was taken aback by the amount of overgrowth. Not surprising after all the rain🙄 So, he clambered around while I hovered in one place😂 It was worth the effort but we're both stiff today 😉 xBeryl
To be honest the guy that fixed my roof told me I will be lucky if I get another two years out of it! Don't always believe these people, but one of the guys had to try 3 different places to actually find tiles to replace my broken ones! So at least if I do get the grant I will not be moving for a while. Sore point with me and ivy, mine grew in from next door and it is hell to get under control, but I too still try to do my bit, normally ends up with me on the floor. Oh another highlight I had to unblock my drain outside and it was not pretty, but seemed I still have the smallest hands and then got laughed at as there was no way I could get up on my own and then they turned the hose pipe on me!
Oh and my ex is no longer my ex!!!! It seems I am the only one that did not see that one coming. My own family said what other reason was he sticking around for! So damaged goods I maybe, but it is all good fun in the end.
Hi Denise, I am waiting to have my legs tested too, as my toes are going floppy. I once phoned the DWP and they spoke to me as if I was an idiot, maybe I was for ringing them. I don't know what I have wrong with me as specialists I have seen have different opinions, which really bothers me as I just want a name. I wonder if they give you grants for a shower instead of a bath, as it hurts my spine trying to get in and out now. Hope you get some answers, take care
Hi Suzie, if you have been through your ESA assessment and they have ruled in your favour and you have put in an application for PIP and been successful there is a very strong chance that you can get a grant and it does cover things like a walk in shower, I use a mini step ladder to get in my bath to use the shower and have handles set up either side of it, but it is not ideal. More often than not the bathroom just gets very wet. You have to start thinking outside the box and work out how you can do things, I dare not mention some of the odd things I do!
None of it is easy a bit like the worst test you ever sat, but we are built to keep trying. I am getting another one of those leg test too oh and just in case you wondered it doesn't hurt a bit.
Thank you Denise for the info, I had tests on my arm and it hurt all the way though the test, electric shocks, my arms felt even worse after that test. Think he had it too high to be honest.
I hope you pointed that fact out as I think that is a good sign for you, it could mean that there is less damage to the nerve endings or they could be over reacting, I am no expert but an interesting talking point. I have found that none of my nerve endings are totally dead just not working in the right order, so it still gives me some hope. I hate the fact that I am only getting another one as a. they don't know what to do with me, b, they think I have got worse or, oh lets not mention c!
As long as you have been cleared from some of the nasty sides to this and you really need to get that checked out, the rest is just pushing yourself the most you can and forgive yourself for the bad days.
I am not always good at that one, but I still manage to stay pretty happy.
Hi Denise, I had the tests done because my arms are numb on waking always and my hands tingle on the backs of them, my hands and arms twitch and have wasting, now my toes are going floppy, don't know why. I have lots symptoms and slight weak swallow. I just wish I had a name to it all. I try to carry on but sometimes it is just too much.
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