Hi all, been out of action for a few weeks with flare-up of SLE. Hands have been very bad this time & couldn't type so was unable to have a good moan to you lovely folk. Am still pretty bad but at least can share with you now. Got to be honest, been feeling fairly fed up - VERY Eeyorish ! Was supposed to be going to Lincoln with my Sis to stay with friends for long weekend but am struggling to even get dressed & needing help to shower so it was a no go for me.
GP has increased my Prednisolone & got Oramorph for breakthrough pain (helps but also adds to the "brain-fog" !) Hopefully it will ease up in time for Christmas.
Have got some good news though - I got my driving licence back ! Had to relinquish it because of fits caused by the Lupus but not had one for about 7years. Before flare started my wonderful big Sister put me on her insurance, it's been great to have that freedom again. She even let me borrow it for a week when she was away - she's the best Sis ever !! (She's also my best friend - I know how blessed I am to have her)
Am thinking of getting a Motability car as I get the high rate of the mobility component of DLA. Just wondered if any of you guys have any experience of this ? Are they worth the money as I know it's a big commitment ? I spend a lot of money on taxis & don't like to have to rely on friends/family for lifts. Also think I wouldn't feel so trapped as I do at times. I've been driving since I was 17 & been fortunate to always have a car in the past. I'm sure it would help my mental/emotional health just knowing that when I'm ok I could jump (!) in & go visit folk or just go for a ride to the country/coast (N.Yorks moors & coast are on my doorstep) I need to weigh up the pros & cons so would be very grateful if anyone can share their experience please.
Have really missed being in touch with you lovely folk over the past few weeks & so glad to be back in this community. You all help so much, I know I'm not alone with this any more - thank you ! Just writing this has eased some of the "poor little old me's" (PLOMS !) Am no where near to being "Tiggerish" but don't feel quite so "Eeyorish" ! Keep well folks
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Carolyn1063
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Hi, brilliant news about your driving licence, but sorry you're in a bad flare. I bought my own car, an automatic, which I find much better to use than a manual. I see you say you're on DLA. Pip is different and when you change to that may not be eligible for a motobility car. I'm sure others on here will tell you the difference in rates better as I'm still on DLA too, I've just seen what others have posted. Applying for a car may trigger the change to pip too, which is more stress. Hope you get your independence back quickly
Thank you for your reply jayfer. Yes, the change to PIP is something I'm concerned about. I've read some horror stories about people who've already changed to PIP - it sounds like a minefield. I know there's a site that you can get to from here which takes you through the forms. It would help a bit if we knew when we are going to change but I've no idea when this is going to happen. May look into leasing a car as a couple of friends do now as don't think I could afford to buy one. Anyway, got to keep thinking positive & my fab Sis will loan me hers when she's not using it. Thank you so much for you good wishes my friend, will keep you posted. Keep well
Sorry to read your having a bad flare but lovely you got your driving licence back!. Can't put a price on independence!.
A note of caution like Jayfer has given you. If you use your DLA money to lease the car and lose it in the transfer to PIP you'll be without wheels!. On the news recently it said that people are having to hand back their cars at the rate of 1000 per week they've tightened it up on PIP!. I think also you have to have a year or two years of the award to do it and we don't know when we're going to be asked to re-apply. I'm waiting for that like you. I used my DLA money to buy my car so I'd always have wheels.
Whatever you decide treasure your sister, she's a fab support and enjoy driving again. X
Thank u so much Misty, I'm so glad to be back too ! I've decided to wait & see what happens when they get around to changing to PIP. Think it'd be worse to have a taste of 4 wheeled freedom only to have to hand it back. May look into leasing but will be cautious & talk it over with Sis first. You're right she (Maureen) is an absolutely amazing big Sister (& best friend too). I really am blessed & she'll lend me her car anytime she's not using it.
Thank you for your good wishes Misty, hands are a lot better which means I can keep in touch with you lovely folk who I count as friends now. Just got to wait for the rest of my body to follow !! I AM feeling much better emotionally already, just by re-connecting with you guys - it helps so much knowing ur not alone in this. The Poor Little Old Me's are going !!
Thank you for your lovely reply Carolyn, so agree with you about the benefits of forum. It's comforting to know we're not alone!. Hope you continue to improve, do agree that it would be awful to suddenly lose your car if your re-categorised!. Take Care and keep posting. X
What about getting voice recognition software? It used to be hopeless but has improved a lot in recent years. Then you can "type" however bad your hands are.
Thank you PMRpro - what a great idea ! Need computer looking at so will enquire about software. What a great site this is - getting a solution to a problem within minutes !! Thank you again X
Yay about the license! I have a Motability vehicle for my son (who is ASD) and I fitted it with a hoist for a powerchair for myself. They are a LIFESAVER, I can't even begin to sing enough praises of the program. You can get one adapted to your needs - mine is automatic because I can't work a shift anymore, and I have no more parking brake lever either - just a button to press! Such a relief to my shoulder which used to pop out regularly whenever I tried to put the brake on. And, even when I'm too tired to drive, I can put a named driver on the vehicle insurance (my Dutchman) and he can drive for me, so we can pick up our son from school together and go for outings with wheelchair in tow. I don't have to worry about break downs or the millions of things that go wrong with cars (because cars are expensive and something always needs fixing) - I call AA and everything is covered; even if I can't bend down to fill air in the tyres! It takes a lot of effort out of having a vehicle.
Now there is the concern about the PIP - tbh I have considered not even bothering to apply for it, as I'm sure I won't get it and I'd have to give up my powerchair (the car is my son's and he will have one till he is 16, when he would have to shift to PIP - and probably would have lost it). HOWEVER - and this is a big however - the current Minister for Disabled has said on record they are looking into making Motability available to anyone who gets the mobility component of PIP. That means standard OR Enhanced might be eligible. Now, that would be an issue on how to make up the rate on some of the cars which would go over the standard rate, BUT it's good news for people who are afraid of losing Motability vehicles. There is hope!
For now, if it would help you, then I would strongly recommend you get a vehicle. It may also strengthen your case for PIP because all the uproar about people losing their vehicles is bringing a lot of criticism down on the case, and it's one of the main reasons people appeal (and win). If you have a car it may help you with your PIP, even if you lose it - your appeal will have to take it into account and it may help you win it back. That, however, is a future concern. For the present, I'd recommend a car.
Thank you so much for the advice Silvergilt. There's a lot to consider carefully. Will talk it over with my sister & let u know what I decide to do. Hope you don't have trouble when the change takes place. You enjoy your freedom & keep well
👋👋👋👋 GLAD you're back Carolyn! Am hoping the adjustments to your meds work their magic pronto...especially helping your ultra poorly hands
👏👏👏👏 congrats at getting your driving license back: oh my do wheels ever mean an enormous amount to me too...this discussion is a Master Class re motability...am v grateful as I'd been wondering about this. Please let us know how you get on
Glad to see you back! As PMRpro says, the voice recognition software has improved enormously over the years. I have it installed as a free app on my ipad just in case, and the difference in it now compared to when a visually impaired colleague used it is incredible. It seems to be called Dragon Dication now. Colleague called it *€¥# Dragon" then.
I have a motability car, it's been a godsend. It gives me a feeling of independence and the service is great. I've had motability cars since 1996 but may loose mine as my DLA has been terminated and I am having to apply for PIP
Don't want to get political but they're going after the wrong people aren't they ? Am sure all of us here who can't work would love to be employed again & able to buy own cars. I really hope it works out well for you Maurice.
If I were you I would buy myself a wee car , there are some good deals out there just now. PIP is Very different and people who have had DLA for many years and been entitled to it are no longer so. Like many others I had Mobility car which I have had to return . I went out couple of weeks ago and bought myself one , now I am not dependent on them to get about BUT I am taking it to Tribunal as point of principle , How can a person who does not know you, sees you for half hour conclude that you are not entitled to it . my experience is that half the evidence is not looked at . So good luck, glad you got your licence and get yourself wee car so you need not worry about it
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