Car.

[sylvi]

I've made the sad decision to give up my motorbility car. I've been unable to use it for over 12mths now. As i'm not working i think the money will be better in my bank than on the car sitting in the garage. Its not a decision i've taken lightly as its my independence going. I've got a electric scooter than can get me up the village and to bedworth, which is as much as i want to do some days. I've contacted dwp about my dla and they are sending me forms for a review on the care side as i already get the lower tariff of care, i'm trying to see if i can get the medium one as i can't do any housework now. Today is not a good day as i've been up most of the night again. I get fed up with not being able to sleep. To all you lovely people out there keep going and keep smiling how ever hard it is.

love sylvi. xx

[Hidden]

Hi Syvi, it must have been a very hard decision for you to make. Yes its the money, like you say, paying out for something you haven't been able to use, but it's symbolises so much. But like you say a bit more in the Bank for you to change your hair colour more often!!?? Sorry I tend to be a bit flippant. Sorry you are having a bad day, but like you say keep smiling. Take care

Julie xx

[sylvi in reply to Hidden]

HI julie, if we're not flippant this disease would be an awful lot harder wouldn't. My husband does take me out, but the clothes in the shops at the moment are nothing to write home about, so i don't think i'm missing much. Thank goodness for home shopping. My hair is not the only thing that gets done, my nails are different colours as well. I think that i'm not going to set the world on fire with my figure, so i might as well do it with my hair and nails. Love sylvi. xx

[cathie]

Keep going Syvi. Its important to get out though, is there anyone who will take you out to the shops etc on a regular basis? Or isnt that possible? I was stuck inside when we had those heavy snow falls and I didnt dare risk the icerink pavements this winter, and last. So have a little idea about being stuck inside.

It sounds as though you still have the scooter, so I hope you can get out on that. Hugs, C

[sylvi]

I know what you meant about the snow. I didn't go very far last winter either. Since last August when i had 2nd op on my knee, i've been in agony with my ra. Resulting ing 3days in walsgrave on a drip, it eased it from the pain i was in,but not enough to be pain free i'm afraid.

The scooter has been a boon as i don't have to rely on anyone taking me. My old one died the death ans the charity ssafa got me a new one which i'm very grateful to them for. I never expected when i married my husband 28yrs ago that he would be looking after me, i thought it would be the other way round as he's a bit older than me. You'd never believe that at 67yrs old he's fitter than i am. Doesn't make sense does it. Then nothing about ra does.

Love sylvi. x

[Hidden]

Hi Sylvi, I understand how you feel about your husband looking after you, mine started looking after me when I had my son at the age of 30.Washing me taking me to the toilet etc, were so helpless at times good job they love us so much.

I know what you mean about staying in that gets you down too, can't win can we, I feel so alone and isolated at times. I take my son to school at 8.30 then sometimes I don't see or speak to anyone else until I get him from school at 3.00!

Your scooter will be good for the nice weather and the extra income from giving up your car will be useful too.

Take care sylvi.

mand xx

[Sharon56]

Oh a brave and wise decision the money is better in your pocket as you say. I have had to fill in those blessed DLA forms today. I got the mobility component after breaking my hip and wrist in February 2010 and now I have got to prove I still need it. The questions are so difficult to answer as you will probably know but I have done my best with them. How can you possibly make them understand RA. Sharon

[Hidden]

sorry to hear that my car is my independence.. take it yours was small and automatic ie as easy for you to manage as possible.. mine at moment is still manual but power steering.. dont rush this decision.. though you could pay for a taxi?. do you get any help with that cost>?

take care alison x

[sylvi]

Thank you everyone, its nice to know i'm not in this alone. Today i'm going to put it in motion. Motorability have said that when i'm able to drive i will be able to have another car, which is a promising outlook. Now i've got to learn to live with what i've got. My doc said last night that this is as good as its ever going to be. He has given me a no. to ring to get help sorting my live out. Ever since i was diagnosd with this disease 9yrs ago i always said i wouldn't give in to it, now it seems i've got to live round it. Hell i don't know how i'm going to do that. I hate asking for help. I'm not usually a depressing person i'm always there to cheer others up, but i don't know how to with myself. That sounds like a comedy line, it would be funny if it was in a show. So this morning i'm going to make that phone call and see how i get on. I think i might ring my ra nurse and see if i can go to ot and see what help they can give me

Thank you all for listening,

sylvi. xx

[Hidden]

reasurring you can get another keep up the hair dos and nails lol x alison x

[sylvi]

thanks that made me smile.xx

[Hidden]

Sylvi,

I totally know how you feel 12months ago after me not driving for 4 months already because I was totally unfit to anyway I'd been through a real bad flare in hospital and basicaly the only reason I got out off bed was to go the the portable toilet I had at the time, I was fed meals etc this was the lowest time ever, anyway once I started to pick up I ordered my new automatic care (as my doc had said before hand it was only temporary he adivsed me not to drive) two weeks before my new car was due to be ready for me, I recived a letter from the DVLA saying my GP had advised them to revoke my driving liscense under ill health grounds, and this would be the case for a minimum off 6 months if I wished to appeal for it back after this I would have to have aggrement off my GP.

I booked an appointment for the next day with my GP I wanted to scream my head off at him "how dare he", however he calmed me and explained that he was looking after my interests and that he didnt think I had the strenght in my hands/ wrists everyday to control a car or in my legs/kness, so I said well I can get an addapted car then. but still he explained that due to my pain killers morphine and tramadol etc that these were meds you cant drive with anyway!

My partner totally sided with my GP and after they both calmed me down although completly devestated I agreeded that not only did I not have full strenght to operate a car, I cant turn my neck far so wouldnt be able to check behind me, I also have lost a hell off a lot off concentration due to fibro fog, pain and pain meds etc.

So I cancelled my car, lost my deposit!

And this is when my GP decided to apply me for a wheelchair he said I still needed to get out and maybe this would help as sometimes I struggle to even stand due to the pain in feet and lower back.

I too have a scooter now and an electric wheelchair and get about were I need to on these now, not the same as the car, but getting used to it now.

Maybe one day I will get back driving just got to find a med that works for me.

Take care and dont let not driving keep you stuck in at home use your scooter.

Julie

[sylvi]

I know exactly what your saying, I don't have the strengh either. All my right side feels like it wants to shut down. I'm right handed as well which doesn't help. Motorbility have been wonderful to me, telling me what to do and how to go about it. The garage where i got the car from have been great too. Personally i don't think i'm ever going to drive again, i haven't had my licence revoked though. I do go out on my scooter though as long as the weather holds every chance i get.

I'm having a very rough time of it at the moment, lack of sleep, pain, frustration at not being able to do what i want to. I've been told i've got to look to ways of coping with what i've got, eg, lack of mobility, unable to do a job or my housework, that really gets me down. My family are good, but you know as well as i do that its not the same as doing it yourself. I'm on high doses of painkillers like you, i didn't know that i shouldn't drive with those meds inside you. I also find i'm losing my confidence to drive. I sit in my husbands car and i'm seeing every hazard going.

I try so hard to get on with things, but it gets harder the more i try. I always said that i wouldn't let this disease beat me and i wouldn't give in to it. The gp tells me its not giving in, its just trying to work round it. I don't know about you but i find that very hard. I'm restricted as to where i can go, my scooter wouldn't get me to nuneaton and back as its too far, but it will get me to bedworth and back easily which is good at least. I have trouble cutting up meat at times too. I'm 55yrs old and have to have my meat cut up, it would be funny if it wasn't so painful.

I try i really do but today its bl***y hard, i've got a funeral to go to in birmingham and all i want to do is go back to bed. At least i'm alive.

Take care my friend if you would like to talk on the phone let me know and we'll swop numbers. The sun is shining and i'd better get ready.

Luv sylvia. xx

[Hidden]

Hi Sylvi

Well done you on making such a sensible and rational decision. It is a loss but the cash will be more useful to you at the moment.

Sorry to hear you feel so unwell though. When is your next rheumatology appointment? It sounds as though a review of medication is in order and certainly reconsideration of your pain management drugs. If you are taking oodles of the things and you're still in pain then you need something more suitable. Your GP should be able to advise on this. Certain drugs are particularly useful at night to ensure a good night's rest. I take 2 x dihydrocodeine with paracetamol and 2 x nortriptyline ... they work really well!

Take care Sylvi,

Lyn x

[sylvi in reply to Hidden]

hi lyn, i had all my drugs changed in march, but i'm going to ring the hospital on monday morning. My gp won't interfere with what the hospital are doing.. He says that i've got to work round it, all he has given me is a phone no. for help in manageing my symptons. Have spoken to them they are sending me forms and a pack to look at, then we have to wait to see what they come up with. I already take a sleeping tablet to help me sleep. Thanks for telling me that i've made the right decision, it helps that you are not intematly involved in the decision and that your not biased. It has been a long thought out process to get to this stage, and not an easy one. I might not be able to use my hands very well but at least they look very brightly coloured and people comment on them. That means that they have to talk to me which means i have to answer and it gives me a chance to come out of myself, if you know what i mean. Its more about me and not the ra, thats what i think anyway. I'm now of to Bedworth on my scooter to get the veg for the weekend if it doesn't rain, if it does i'll have to use a brolly. Talk to you later.

Take care sylvi. xx