I went for a disability mobility assessment a week ago which really kicked my denial of having RA in the arse.
My sister has been down to see me from Scotland twice in the last few months during my worst times as I live alone, she also has an auto immune disease and is none to well herself. I hate that she feels that she had to do that and felt somehow responsible for me. She encouraged me to try for a blue badge for the car as I rarely go out now, it took some encouragement as I have always thought that they were only for people in wheelchairs and although sometimes now I have to use a walking stick there have been other times when I can manage to look normal when walking, albeit slowly.
I was completely honest with the assessor who was a lovely young lady who was an OT, incidentally she tried to encourage me to apply for PIP also and gave me a number to phone for OT input.... Neither of which I will be doing!
At the end of the assessment she told me that I needed a blue badge and that would be her recommendation.....I cried all the way home, I think I finally realised that this isn't going to go away which is what has been keeping me going. Somehow I thought that after doing all I've been told to do, taking all the meds I've been given, I would get better! Or at least not worse which is what seems to have happened.
Does anyone here have a badge? Do you always use it even on better days? I've read so much about people being confronted getting out and walking when parked in a disabled space or am I just over thinking things as usual.
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Moifoi
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Moifoi, I understand exactly how you feel. When I put mine up on the windscreen and got out of the car to go into the house it turned around to have a look and I burst out crying.....I felt so old, sick and worse vulnerable as I too live on my own.
It's a terrible feeling.....I also had the same feeling the day my shower chair, kettle cradle and other odd bits and pieces were delivered......I was devistated.
I too was recommended for a blue badge.....I have to say I use it most days. When I do grocerie shopping I like to be as close to the car as possible so I don't have to carry heavy bags.
The down side of blue badge holders is that there are a certain class of people who think it's alright to park in disabled spaces when the don't have a badge. I have approched many people for doing this and their responses couldn't be printed on this site. I hope you don't run into this sort of thing, it's not pleasant.
I'm afraid moifoi that you will just have to accept where you are at the moment......easy to say I do know but I've been where you are and in the end.......well, you just accept!
Thank you so much for this lovely reply. When I tried to explain to my friends they just say I'm 'jammy' and if I don't want it they'll borrow it. That makes them sound hard but I think you probably can't understand unless you've been there. Thanks again x
Hi Moifio, We all have good days and bad days i use my blue badge on bad days but not on good days, Also it's your right to apply for PIP not everyone gets it first time then you appeal their decision, anything you need to know about RA this is the right page to do so you have help and support 24/7 even if you just want a good moan, good luck.Mattcass
I don't think I'll apply for pip, I've read too often on here and elsewhere how badly people are treated by atos and the like, I hate how they treat people and I'm afraid that my vile prison and Glaswegian language would overcome the requirement to be civil. I've worked for 50 years and only claimed invalidity benefit once it that time for 6 months ... I was treated like some kind of sub species.
Moifoi, i have a blue badge and it was the best thing i could do to help myself. I use it all the time. The thing i hate is my scooters,though i have to say they are very badly needed as i don't think i would go out without them. It helps my hubby as well as he loads and unloads my portable scooter for me and we have enough room for him to do it. Sad to say you are going to be as good as you are and i understand where your coming from,but if it won't cure you,it will give yo a better quality of life and isn't that more important than your pride my friend. I have a stair lift, a reclining chair and bed as well. They all give me a better life,maybe not the one i imagined,but it is the one i have got. Look on it as a way to help you, not as a failing. As to pip if you don't apply you won't know,not only that i bet you have worked just like i have and have paid your taxes and at this time in your life you need the help,more than those lazy so and soes who think it is great to live off benefits. If your still working and you get it,it means that you could reduce your hours so you can enjoy your life more..Don't despair if it gives you a better quality of life then so be it.xxxxx
Thanks Sylvia, I know in my heart that you are absolutely right, and I would be saying exactly the same to someone else.
I think I'm still having difficulty in accepting it, I know it is what it is, I talk to myself to try to come to terms with how radically my life has changed in the past 6 months, sometimes though I still hate and resent that. Futile exercise I know.. What helped you most in coming to terms with it?
Thank you for taking the time to answer and help me x
I fell down the stairs and done my knee in and then four years ago i got made redundant and i haven't been able to work since. Hubby straight away ordered me a stair lift as i couldn't get up and down the stairs very well.That was some 25th wedding present i can tell you. I don't think i have ever accepted it to be brutally honest as i still over do to this day,but i am getting better at it. You must apply for both blue badge and pip, and appeal until you get it. You have earned it.xxxx
I'm kind of concerned yet perversely reassured that you say you haven't fully accepted it Sylvi, I think I'm scared to accept it in case it makes me worse or give up. Does that make any sense at all?
Yes it makes perfect sense,you never think your gonna be ill,but sadly we are ill. I have come to terms with the disease accept it now thats a whole different question. Thats why i won't grow old gracefully,my nails and hair are all different colours and its my way of saying i won't let ra beat me.xxxx
A wise rheumy nurse told me to consider it an "Enabled Badge" rather than Disabled - on my not so good days it enables me to get out and park near to to my destination. On a good day it can stay in the glove compartment.
There are too many times to count now over the years when I couldn't have managed without it - such as going to the hospital or GPs when you're having a flare and can only inch along slowly for a small distance.
Re PIP, this is what we pay out taxes and NI for when we're working - you've paid into the system, now it's your turn to have it pay out. It will help to pay for any assistance that you need in the home when you're 'bad' and allow you to maintain your independence.
Thank you Cece, I could not use it on good days, hadn't really thought of that strangely. Right now I'm a bit low and thinking in absolute terms, do you know the one about 'am I ever going to have a good day again?' That's where I'm at presently I'm sure.
That's what the OT lady said, you've paid national insurance for 50 years for just this reason, they are holding your money.
I get that, but my worry is in getting involved with these atos type people, I know I couldn't be civil if they treated me the way I've seen others treated.
But you may not need to deal with Atos folk in person - unless you appeal their decision - it starts with straight forward form filling and medical reports and anyway a good bit of assertive 'straight talk' is much needed!
It's really early days for you and you're cycling through the emotions that go with grieving the loss of life as you knew it. But trust me, things will improve and you will come to terms with it, gradually - and black and white thinking goes with that early stage of being overwhelmed by all the negative changes that you feel are happening to you and your life. The very first step is to be kind to yourself and your body:-}
I don't have a blue badge but recently had foot surgery and used crutches - the s/market said to put a note on my windscreen saying I had spoken to them & it was OK to park in the dibsabled bays whilst using crutches. Nobody said a word - even when I just used a stick - so please don' worry about what you think people will say - I found nobody took any notice.
Regarding the atos type people - just sit there and imagine them to be in their underwear - that really helps if you are seeing them at a disadvantage!!! You have contributed a life time into the system - please apply - and think frilly underwear at the interviewer - interesting if it's a man doing the interview! Good Luck......... Kathy
I have a blue badge, and even though I walk with two crutches, and have an awful lot of difficulty going more than about 20 yards, I still don't always use it, but when I do want to use it, it is the most wonderful thing to have. Keep it in your purse when you go out. Have a think about where it is difficult for you to park, or to walk from your car to where you want to go, or think about how tired you are at the time, and do a bit of planning in advance. You can say to yourself "yes, I will use it for this particular trip, because......" or "I don't think I need it for this trip because......." . I always wondered if anyone would challenge me for "wrongly" using it,but because I am not an old age pensioner, and I do use walking aids, it seems that it is "acceptable" and no-one has ever looked at me oddly - at least not once I have got out of the car and they can see how hard it is. If you use it when you need it, and have a bit of consideration for other users by not taking up those limited spaces on days that you don't need it, then you will be fine, but don't be a martyr about trying to do without the blue badge - its there to make life easier for you.
Thank you so much for that Earthwitch, my friends tell me I have 'over managed' for too long. I never thought of myself as being particularly vain but if I can't manage to walk the way I used to then I don't go out! I know that seems daft, it's not as though I've done anything wrong to get to this place and I'm so aware that I'm a lot better off than most folks here, I can't seem to get it through my thick skull that life goes on despite the changes. X
I have a blue badge and i use it most days. I could never walk from the car to the hospital never mind the out patients dept. I also use a small scooter that fits in the car in five parts, i can just manage to put it in and out and put it together.Its the difference between going on my own or one of my children taking me. I would'nt like this neither would they., as they all work. I also get DLA or PIP if its changed over, other wise i could'nt do any of them. I use mine to get a disability car, making it possible to be independant.. I agree with everybody else you have paid into it so why should'nt you get something back.
Hi Moifoi so know how you feel about the dratted RA. Like you keep thinking it will go away sadly after a year think i might be stuck with it!! Still don't want it but body has other ideas.... I do have the blue badge my heart did sink when it arrived but it really does help when shopping and bad days. So hope you apply for one xxxx
Yes I do have a Blue badge and also DLA for care and mobility at the higher rate. I do have RA and OA, fibro and a diet no one loves me for of 'no this and no that and lots of allergies' cos I was not diagnosed for 50 years from coeliac disease and dairy products. This I feel is the cause of my immune system and pancreas being poorly. I take enzymes even to digest a biscuit. Though the diet is better than boiled fish and mashed potatoes I had for years. I agree with the previous writer who said "grieving for the life one had". Yes this is true and I spent the 80's in depression cos I could not work till in 1987 I applied for mobility and in 1994 for care. That is why I learnt medicine. NOT a GP type. It has helped me and the more I learn the more I want to learn. I love immunology. Learning about what is wrong is helpful in lots of ways and this site is great for that.
Though I've been a member for over a year, I haven't been active for a while, but I had to add my voice to your question about a Blue badge.
I agree wholeheartedly with everyone's replies, not least because you have worked hard and paid your share of tax over many years, but because your independence is a major part of helping you to feel that life is worth living, even with the dreaded RA.
I suppose most of us kick against the fact that this is how it's going to be for the rest of our lives. It certainly is not how I envisaged the autumn of my days, to be.
I had pictures in my head of still growing my tomatoes and runner beans each summer and growing plants to fill my tubs and containers, not to mention taking the shears to the privet hedge well into my 80's. Ha,ha,ha I should be so lucky. The reality finally hit home this summer
Needless to say, I do have a blue badge and I have had DLA for the last couple of years which has enabled me to have a Motorbility car which my little blue scooter fits nicely in the boot of. Without these vital aids I would be housebound. I'm not going to say that I don't feel conspicuous when I use my scooter, because I still sometimes do. I'd much rather be able to walk swiftly and strongly, even break into a little run now and then like I used to do.
I've just filled in all the pages of a new claim form for continued DLA and sent it off, feeling that I was bound to lose it this time. My husband told me off for being negative and he was right to say so, because the answer dropped on my doormat a couple of days ago and the answer was, nothing has changed, so I get to keep my little car with my scooter in the boot.
So, please think very seriously about having a blue badge and claiming DLA/PEP, because no matter what anyone says, you are entitled and you are a genuine case. You can hold your head up high because you have always been a hard worker and paid your due's, and now you need some help to be more independent.
I wish you well and hope the outcome of all these messages is positive for you.
Petalnumber2, thank you SO much for this reply and being so open and supportive , it did make me think seriously about it, you're right, I have paid my dues and I do need some help for now so I am going to apply. Thank you again x
I am now 71 and do feel for those of you who have to keep filling in forms for pip and dla etc. Though they are not touching us for now I reckon it won't be long before they take a look at those of us over 65. I recently bought a mobility scooter and it is great. till I got out the wrong side and so bashed my shoulder and 8 weeks later the muscles have still not gone back to where they should be. Now a little scared but I must get back on it. At least I was out in the fresh air. Anyone else feel like that?
Hi skeggy, just to let you know that I am 66, so I guess they have started looking at the pensioners. Perhaps they are working upwards in age, so you might have a little time to wait. June xx
Yup thought so. One had to be below 65 at a certain age. 16 to 24. If you are over 65 the Blue badge has to be applied for and you cannot get mobility if over that age. At 65 it becomes Attendance Allowance. I am sad you are a year too old to apply for DLA as if you do get this at the higher rate for mobility then you get the Blue badge automatically and continue getting DLA. I qualified for this....Until they change it. Check what I have written as it is written as I understand the rules.
Hello I have shared the same concern as you Moifoi about applying for these things. I am now 19 and have lived with RA for little over 2 years. It is so difficult especially with it being 'an invisible disease' I have found it tough as I am still at college trying to finish my A-levels because of repeated illness! I feel guilty applying for a blue badge and PIP but currently my meds aren't working and I can't work part-time alongside college. I still haven't come to terms with all of this really, I try but I feel like nobody understands especially because I am only 19. I rely fully on my little car to get me to and from college, hospital appointments, blood takings the lot As I am now 19 I also have to pay for my prescriptions which are so expensive as I can't work and am at college full-time so feel that the only way is to apply for PIP but I feel as though it is for people who need to pay for carers and other things :/ Not sure what I should do in terms of blue badge and PIP xx
Bless your heart, do it darlin, I've been convinced by the good people on here.... It's too important for you as you are at the start of your life to miss out on any help that you can get to continue with your education. Later on, when your illness is better controlled or new meds make life easier you can choose to continue to claim or not, or use your badge or not. Good luck sweetie xxx
Thank you, I think I will, it seems like it will help so much as lift a lot of the stress RA causes Thank you Moifoi, I hope it is all helpful for you too xxx
My heart goes out to you being only 19 with RA, and it would seem that there are quite a few young ones who are really struggling to lead as near a normal life as possible.
The blue badge scheme and DLA/PIP were set up to help people of all ages and circumstances, so my advice would be to make an appointment with an organisation such Citizens Advice Bureau or Welfare Rights first of all. You would need to see someone who is trained to give benefits advice. Perhaps you could take someone with you for support, a relative or close friend perhaps.
I have long been a carer for my husband who is severely disabled and I contacted the Carers Association first of all and they put me in touch with their Welfare and Benefits Officer. She was very helpful and it was she who helped me to fill in my first claim form.
I wish you well and hope you can get some help so that your path in life is made easier than it is right now. June xx
Thank you I will make an appointment with one of them and probably take my mum along everyone on here is so helpful and do make me feel a lot better about all of this as I know I'm not alone I guess it'll just take time until it all settles down xx
Do you use the Prescription "Season Ticket" ? If not it can save a lot of money - look on the back of your NHS prescription form - it tells you how to apply - I used it for years before I was 60, and if you work it right you can get an extra months presciptions for each quarter.I must say I thought if you were in full time education you qualified for free scrips - just shows how out of touch I am.....Kathy
On the prescription forms it says only full time education up to 18 years of age. I will have a look in to it Would definitely be worth while Thank you
On the NHS website it refers to a low income scheme (wider criteria than the usual eligibility criteria of Job Seekers etc), provided yourincome is<£26,000, a HC2 form needs to be completed. Worth checking out? Otherwise the annual season ticket must be your best bet
I say go for it. But it isn't necessarily a one way road. I have been through times when I couldn't even negotiate the step down into the garden of the new house we'd just bought. But gradually I have gained more mobility and although I can't do what I used to, I can get out, catch the bus, walk a fair way around town etc. just a little at a time, and learning how to handle stress. I hope you can experience some of this, focus on good days.
B2403 I do feel for you. Have you a counsellor at college who can help you? That is my suggestion. They know where to go for help. Also do you have any disease like being hypothyroid when at present it qualifies as free prescriptions. Ask at a pharmacist if in doubt. I can't imagine there are no grants you can claim.
No I don't have another that would qualify unfortunately and I wrote to my local MP to see if there was anything he would suggest. My response was that he shared my concern and from there contacted the health minister who's remit it falls under and their response was simply that they won't change things as it hasn't been changed up to present. So not an awful lot of luck there! I will put a claim in for PIP though which will help cover those costs I will see about college - I think it's because ~I have to put a brave face on all day at college that when I get home I'm just exhausted! Thank you x
College counsellor might be able to help further like a fund or at least advice re PIP. I do not know if the rules are the same as for DLA when one gets a blue badge cos of being on DLA at the higher rate. Worth checking though.
Best wishes to you and trust also you continue with the course and get the results you want for a career. May I ask what you are studying. I used to teach Law, Accountancy etc
Thank you I am studying my second year of A-levels in Geography, Law and Archaeology I am also doing an Extended Learning Project Hope to go to uni next year so busy applying at the moment!
I loved it when I practised it and then taught it in London. Had over 350 children staying on after school to learn. It is a lovely subject and inspires one to find answers. To delve deep to find them.
Yes I have a blue badge since I have Lupus, COPD and RA. Sometimes I use my walker or scooter, but I do have a cane for those good days. After receiveing my paper work from the DR and took it to the DMV for the tag. It helps when those days of so painful.
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