A little advice please?

Hi I wonder if you could advise me? I am finding it harder and harder to walk any distance. I am thinking I may have to bite the bullet of getting a wheelchair and I don't know how to go about it. My husband in an unguarded moment said that I was a burden and then changed it to the situation is burdensome with my ME and fybro. I know things are not done and curtailed because I cannot do them, it makes me very sad. Any advice would be greatly appreciated - thanks in advance xxx

17 Replies

  • hi there i'm Alan have you tried mobility for any aid that they might be able to help, and do you get DLA higher or lower it doesn't matter which one just ask them for help, hope this helps sorry its not much take care Alan

  • Hi Alan I have tried to secure PIP but twice been unsuccessful. I will need to try again soon thanks though x

  • hi Jayne68 when you have tried PIP twice, how did you explain yourself, the reason being that if you don't tell them in 20 different ways that one illness effects they will close the door on you. want i'm trying to say for every ache and pain in your body and for each question they ask you after tell them how one movement say of you leg for different moves you made what and how does it effect you pain and movement if your not with me it is hard to explain because if you don't tell them just for one ache in what ways does it effect you. if this doesn't make sence i send you my number to explain ove the phone Alan

  • Hiya Alan

    Nice to see your post I have not been around a lot been really really stressed out back in hospital and not felt like talking went into my little she'll for a while.

    Hope you are as good as you can be.

    Happy new year,


  • Hi Glynis its nice to hear from you sorry you have been stressed out and in hospital are me and you twins why i was in hospital as well nearly didn't come out had lower and upper abdomen trouble plus slap bang in between was my badder, but i'm nearly 100%, hope your feeling better as well, let hope this year isn't as bad as last year take care speak to you soon your friend Alan xx

  • Hiya Alan

    So sorry to hear you been in hospital as well think we must be twins,lol I have had trouble with my upper and lower stomach as well.

    Glad to hear you are feeling much better now.

    I am so glad last year is over with and all I am thinking is think positive and hope for best,

    Take care


  • hi Glynis i could have put a fiver on that we shared the same trouble wow i would have never thought that, well i hope your feeling better from it and like you i'm glad last year as gone, just see now what this year brings to us. take care my friend sleep well sweet dreams Alan xx

  • Can I ask what your problems were with your upper & lower stomach? I was diagnosed with Fibro this past June & keep getting new & worsening symptoms - one of they being really bad indigestion & heart burn. Thank you. Jen

  • hi there Jen i had a blockage in my lower Abdomen to which my upper Abdomen was trapped on top with my bladder trapped in between and when i let wind go you couldn't tell which end was which, your stomach feels like you have been kick in it and you get a heart burn and you feel like a stream train as hit you and i have a Hernia that's the main reason all of mine went of. hope this helps take care speak to you again Alan

  • hi you havent said what medical conditions you have is it the pain in your feet or do you have other conditions we can help more if we know we all have several medical conditions sending softest hugs ,we dont bite honest we are a friendly lot ,

  • I am not sure how to go about getting help.

    All I can say is if your heading the way to a wheelchair get it or borrow one before your next PIP assessment, and use it when you go.

    I wants told I had to stop if I got any pain which apparently they are suposed to tell you before they start.

    If I had to go back now I would refuse to try anything because I was in pain without moving but it wasn,t taken into account at all.

    I list my car DLA all I ended up with us low pip disability payment. £55 a week lot less that I got but at least I got something.

    I have trouble with toilet needs but got nothing for it has they explained they were not bothered how I got to the toilet or even if I got there on time only that once I was at the toilet could I sit on it and stand with an aid. Hum .

    Only told you this then you know what to expect.

    So by using a wheel chair to start with that's a few points. I use a stick .

    I also los my Higher rate DLA because we took out bath out and put a shower in .

    So if you have a bath font tell them you have a shower if you have one.

    If you need help to get in and out of a bath you get 4 points this is where I lost my 4 points I needed only got 8 .

    I am a honest Pearson but I really wish I hadn't told them we took out bath out.

    Hope some of this makes sence.


  • hi jayne i have a self propelled wheelchair but it hurts my armas a lot to propel myself .i got a road schooter of ebay it was near me in bnorthampton so i could try it out it cost me £250 that was a year ago ,i just use the whelchair when my husband takes me to the hospital or doctors it gives you your independance back ime sorry your husband said what he did but to be honist my husband gets fed up with me at times in fact i get fed up with me i tried explaining to my family but no good they cant understand if they dont have it its like explaining to a man how it huts having a baby unless they have a baby ha ha i like that idea they cant know .can you telll me how it feels when you put weight on your feet ot try to walk that would help ,take care he did not mean it ,

  • Hello Jayne 68,

    I am so sorry your health is not good and you feel the need for a wheelchair.

    I also have Fibro & ME, have had since 97' I got my wheelchair from my local hospital wheelchair services. You could ask your Dr to write a letter or approach them yourself like I did. You could also speak to your OT, they can often help in these matters.

    Failing that have you looked in your local papers or advertising boards? Often people advertise wheelchairs or Freegle even.

    You have my sympathy re your Hubby's wrong choice of words. If he is your full-time carer he may be feeling the pressure. My hubby is my full-time carer and was under a great deal of pressure when I was suddenly very, very ill with a rare brain infection called Encephalitis that I some how got earlier this year. I was desperately ill and quite honestly he didn't even know if I would pull through!

    I didn't know who he or my Sister were for a week. I thought of them as a kindly couple who just visited me every day for hours on end! Fortunately I did recover but not without further complications and an even worse mobility than before I was taken I'll.

    But hubby none the less felt the added strain so a couple of weeks ago he took time out to go with his Sister to their other Sister's birthday party in Wales. I wasn't up to such a long journey so my own Sister came to mine to look after me and it left hubby free to unwind and enjoy himself. Maybe that's something your hubby needs!

    Hope this helps somewhat and you manage to get one...

    Laura x

  • Thanks to everyone who have taken the time to compose your kind comments. You have given me some ideas. My arms do tire easily so food for thought ..... Xx

  • I am sincerely sorry to read that you are suffering and struggling so much, and I am genuinely sorry to read that your husband passed a remark that clearly hurt you.

    The NHS do wheelchair loan outs for free but it can be a wait. You would need a GP referral for Rehabilitation and they would offer you one depending on your circumstances. The British Red Cross also do wheelchairs but there is a charge for theirs. I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken x

  • Ask your doctor about a referral to Occupational Health, they can assess you for aids such as handrails, walking aids, etc. Mine got me a wheelchair, toilet frame, perching stool, handrails and a rollator. In some areas you can self-refer.

  • Thanks Midori I will look into that x

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