Wish I had done this years ago

Call it pride or whatever but at long last I have admitted that perhaps I am not as mobile as I once was. It has taken years to accept I needed to use a stick, then arm crutch and then a rollator on really bad days. Anway I decided to apply for a Blue Badge - felt a bit of a fraud as I realise some people are worse off. I had found myself not going out as I could not cope with the walk from the carpark to the shops. I duly filled the form in and waited. I was called for an interview with an occupational therapist. What a delightful person and after watching me walk and after talking about home and what I could and could not manage I was told I would have to wait a couple of weeks for the decision. Well I am know the owner of said Badge and I cannot believe the difference it has made to me. Should have applied ages ago. Should never have been so stubborn - we are all wise with hindsight!

32 Replies

  • Hi Dinkie

    Personally I think Fibro and how it affects us can be extremely hard to accept.

    I have lived with Fibro & ME (plus other conditions) for 36 years but in all honesty I have never really accepted it.

    Good for you getting your Blue Badge and don't feel ashamed to use it.

    I think we can all be stubborn at times and not want to admit that we need some help.

    I genuinely hope that you enjoy your new found freedom :)

    Lu xx

  • Thanks Lu

    I don't think I will ever 100% accept the diagnosis. Don't you think that how the news is delivered has some bearing on it. My locum rheumatologist wrote "fibromyalgia" on a piece of paper handed it to me and said "go look it up, we don't treat it and I'm referring you back to your GP" end of conversation. I sat in the car park and cried. I had never heard of it and had waited 28 long years for someone to tell me I wasn't imagining it. Had absolutely no help. I don't even bother with my GP any more. He told me not to make appointments to discuss anything fibro related just to write to him. How on earth do I know what is fibro related and what isn't. We can all assume it fibro but that is really dangerous to put everything down to the dreaded fibro in my opinion. So I just use trial and error to find out what works for me. Perhaps I should change GPs but I could easily go from the frying pan into the fire!

  • Yes I do agree with you. I was diagnosed in 1980. No internet then! So relied on books.

    I've been diagnosed by a locum doctor, 2 GP's and a Rheumatologist but I still have doctors doubting my diagnosis!! How much more proof do they want?

    I think it is absolutely disgusting the way you have been treated, but sadly it doesn't surprise me.

    My personal opinion would definitely be to change surgeries. Can you ring surgeries local to you and enquire whether they have any GP's that have an interest in Fibro first?

    I would say complain about your GP but if you do, you can then end up being removed from the surgery's list due to a "conflict of interest".

    I think it boils down to the fact that the GP's know nothing about Fibro so can't answer any questions you may have.

    You could be jumping out of the frying pan and into the fire, but I don't see how things could be any worse for you than they are now.

    As you say, it can be very dangerous to put new symptoms down to "just" Fibro.

    One of our members didn't get some chest pain investigated and ended up in hospital and months later is still recovering.

    If you want to ask us any questions here, please do.

    Lu xx

  • I dont think my GP means to be dismissive and I appreciate there are constraints on funding and he probably feels at a loss to know how to help but perhaps I should be looking elsewhere for a more sympathetic GP. I did contact St Thomas's to ask whether I could self fund a consultation to their fibro clinic and they didn't even have the courtesy to reply. Seems we fibro folk and just ignored.

  • If you go onto our mother site fmauk.org you can request that a pack full of information about Fibromyalgia be sent to your GP practice.

    You can have it sent anonymously if you wish.

    There is no reason why you cannot see a Rheumatologist privately.

    Perhaps try a different hospital or contact them again to see if they received your request?

    I think you'd be better off trying to find a good Rheumatologist rather than a Fibro Clinic.

    Lu xx

  • Hi Dinkie.iv had Me , Fibromyalgia since i was 30 im now 51, plus iv had a stroke as well an 2 Heart attacks, an if u read my Vitamins post , your see the rest of my conditions.

    My Doctor said the same to me , i live Clacton on sea , but my old Doctor in Upminster was completed different , i was under Doctor for ME , plus another 2 Doctors now i don't get any help.

    I think a lot has to do with the state of the NHS , an were u live .

    The only other way is going Private to see a Specialist.

    Good Luck .

    Love & Huggs Jacqui xx

  • Same here doctor says you have fibromyalagia have you heard of It? No I replied . Well look it up on the Internet you will find other people with the same its all about self help nobody in the area specialises in it. And basically get on with it. 😕X

  • Glad to know I'm not the only one and it wasn't personal!! Still not exactly helpful for either of us or the many others with fibro. It's not exactly that I am pestering the GP every five minutes. I didn't even know when I made my last appointment that my GP had retired 5 years ago and I had automatically been added to his replacement's list. The new one looks about 12 but then so do most professionals nowadays! Obviously a sign of my galloping old age.

  • Hi Dinkie, that is a dreadful way for go to behave definately look for another doctor, all the younger doctors I have met know all about fibro so check out large practises where there are quite a number of gps much more chance of finding understanding go. All the best

  • Thanks Shazzzy - really need to do some research - there are very few doctors within the area who are accepting new patients. Will try and do it next week when I have a couple of days off work.

  • Oh wow. Defiantly cage GPS that one has no clue about fibro. That's my opinion on him. So yes find someone else. He's never gonna help you. This is not something to be ashamed of hun. Just grab the bull by the horns and be your own advocate that's what I've had to do. As many of the Dr's I've seen had none to poor information to work with for me . I feel my Dr is well suited for me now. As its sort of a specialty for him. This what he told me. Not many like that. Hope you get help.

    Your friend always Country -Gal

  • Hi Dinkie I understand what your saying. It is hard to come to terms with this awful illness. So happy for you, the badge does help. xxx

  • Congratulations.

  • Hi Dinkie , it is difficult to accept when we need help and sometimes misplaced pride gets in the way. It took ages for my husband to persuade me to get a scooter, "I don't want one of them, they are for disabled people"

    I realised I was being selfish expecting him to sit with me, whilst our friends went off walking down the seafront. Neither of us was enjoying life. I was being well and truly stubbornly stupid, I know that now. I bought a second hand one just in case I never used it (!) and it has opened up my world.

    It does take your brain a little while to get used to the idea of "this is what my life is now and how can I make it any easier for myself."

    Have fun with the Blue Badge, you are going places!!!!


  • You sound a lot like someone who is typing this..... took a lot for me to realise I wasn't leaving the house at all! Now I'm trying to but I do have sticks/crutches to help me walk. Looking into a wheelchair of some kind now as well as I feel it would improve my quality of life so much . Yet I'm stubborn. I get my grandmothers voice in my head saying you've got legs! Use them! I was brought up to carry on regardless. Might be because my gran was like she was my mum and mum is like a sister to me now because of it lol. My real siblings even though all are older than me I think tut! Children! lol I'm not even 30 ! And also I'd like to say well done to OP. I can't get a badge because apparently being stuck in the house 100% of the time is completely fine! You always feel like you're pushing yourself right to the limit. Even if you've only done something minimal that day. It does get me down and angry at myself because I can't be a *perfect wife... cook,clean... etc ...

    *disclaimer. No one is perfect. Lol 😂

  • As my little boy used to say "the world is my lobster!" now.

  • Yep, same here took years to apply, wouldn't be without it. When I had to renew it, it ran out at Christmas it took ages for different reasons to get it back and I barely left the house. It makes a big difference, even if I only park at entrance and daughter runs into shop for me, means I don't have to sit for too long as I have coccydenia. Enjoy it,

  • I cannot imagine my life without it now. It has given me so much freedom. I too can't sit for long so trips to cinema and theatre are out as it would just be too embarrassing for me to have to get up every few minutes and move around. I totally seize if I am sitting for too long, so driving too has to have lots of stops factored in but the badge has made it so much easier.

  • Oh bless you, I can associate with your post so much, I know we shouldn't worry about what we look like but it's something that's put in our heads by society that you will be perceived as a different person if you have a walking stick or a disibility scooter. Shouldn't be like this but sadly it is.

    Then you have this determination and stubburness that goes with that and its crazy really because you are the one that's going to suffer when you fall down cos your not using a stick. It took a few falls & bruises before I gave in lol..I use a scooter now because I really can't walk very far at all so i have to but omg I wished I had used one before. So many missed occasions because I couldn't walk.. it's great you have your badge my friend. It just opens up a whole new world

    I'm so pleased for you xx

  • I think much of it is to do with work. I work with much younger people and I did not want to be seen as old and past it. I didn't want the bosses questioning whether or not I could do my job properly for I know at my age it would be very difficult to find alternative employment and like all of us I have bills to pay!

  • Oh yes definitely, I can completely understand that, I struggled for many yrs. actually looking after people, that was funny in itself cos I couldn't look after myself some days lol then I just had to stop but not until I was walking round the house holding on to furniture cos I couldn't walk without this support. Crazy what we put ourselves through isn't it xx

  • It's pride again isn't it. I was a foster carer for years and for one used to giving support it is very hard to then be on the receiving end of support and help and accept it with grace. I feel embarrassed to have to get someone to do my shoes up - I hadn't needed help to do that since I was about 5!

  • Yes tell me about it hun, I used to be foster carer also, I used to work in children's homes also but I have spent most of my adult life working with Autism and Challenging Behaviour, now I'm the one with the challenging behaviour lol especially when I get a dose of Fibro fog & swear blind I put something somewhere & everyone in the house is saying "No you didn't put it there at all" lolll

    I just try to laugh about everything now, as much as I can, only thing that keeps me sane xx

  • Yep - sense of humour is definitely required. My other half asked me why I had one pair of glasses on my head and one pair on my nose. Just call me four eyes!

  • Hahaha I know that trick, I'm quite good at looking for my mobile when I'm actually talking on it to lol..funnies thing was last night, I was talking to a friend & had on loud speaker in the kitchen so i could put it down while getting a drink, then came back in the lounge & shut the door, still talking & wondered why she had gone quiet & wasn't answering me, then realised I'd left her in the kitchen hahaha xx

  • So pleased for you. My friend who I take out on a Tuesday has had one for years and to be honest it often has been the difference between me being able to take her to a place especually the large shopping centres as some of the car parks are so huge. Without the disabled parking nearby I doubt she would even be able to walk to the entrance let alone go in any shops. I do hope this makes a big difference to you.x

  • Iv not gone out on my own for nearly 3 yrs , i had a Blue Bagde an i use a walking stick , iv got ME , Fibromyalgia , plus a Damaged spine in 3 places , an a Heart Condition, But the looks of Discussed i got was Amazing, be cause i don't look ill , how narrow minded people can be , i had 3 old women behind me saying that i wasn't disabled cause i had make up on , well i turned round an told them , are you on 47 tablets a day , how many strokes an heart attacks have you all had , well they stood there with there mouths wide open , what do people think , because we're disabled we have to look ill , what goes on in our bodies dosnt all ways show on the out side.

    Be careful not every were you can use a blue badge, make sure when your parking in Car Parks , just check , to see if you have to pay .iv been caught out .

    Love & Huggs Jacqui xx

  • It's disgusting that we have to turn around and tell ppl off because "we don't look disabled" I've done same as u in the past. Turned round and told them fine you want my illness you have it! They soon shut up lol

  • I met a lady when I was going for my badge assessment. She parked in the disabled parking space and someone walking by stopped

    and said to her "you don't look disabled" as quick as a flash she turned and said "you don't look stupid - so I guess we are both wrong" absolutely brilliant put down!

  • i've used that one as well haha.

  • Hi Dinkie

    I am truly delighted that you have been awarded a Blue Badge, and I sincerely hope that it gives you so me much deserved freedom my friend. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you


  • Hey I too wouldn't be able to go to the stores if I didn't have that badge. Congrats. I can't walk far so I go to stores that have scooters in them so I can ride around to shop.otherwise my wonderful husband would have to do it. He's great that way.😄

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