1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

I sometimes think that I'm invisible

Posted , 10 users are following.

elaine_19679
elaine_19679

I think I'm either the most boring person alive or I've become invisible. No matter if I'm writing to or talking to someone I don't often get an answer. This was never a problem before pmr so I must have really changed. I'm sorry for the moaning but so many things have gone wrong I can't keep up and I'm all cried out.

i guess I'll just have to put up with it but it's a pretty lonely place I'm in at the moment

2 likes, 50 replies

50 Replies

Prev Next
  • debbie27473
    debbie27473 elaine_19679

    Posted

    Hi Elaine. I can't really say anything different to everyone else but I do understand exactly where you are coming from. Since my health problems surfaced I sometimes think I could quietly slip out of the room for an hour and no-one would notice! When people ask 'How are you'? they really don't seem to want the truth so now I just say 'Oh about the same, thankyou' and that seems to suffice! Just wanted you to know that although we are 'only' virtual friends, we will always be here to listen to how you are really feeling and will never 'glaze over' when hearing about your bad days! Sending virtual hugs and smiles, Debbie
  • davidmelville
    davidmelville elaine_19679

    Posted

    Oh so fascinating. I love this forum as things keep popping up . . . who would gave guessed others experience the same.

    i had a huge outburst the other day as I felt ignored, the family who once respected me and listened to me now make me feel like I'm not there. (But of an overkill?) my wife suggested it was part of the retirement process, getting old, after all I'd had my day (she loves me really).

    Never felt happy with the answer but now I know it's Prednisolone or PMR that causes it.

    I will tell you the best laugh . . . . After having fallen a couple of times in the road and fed up with not bring able to go 'Birding' and struggling to get something from the supermarket I went and got a mobility scooter. It's brilliant and literally comes apart into three sections, each light enough to out in the boot. It's my 'Golf Buggy'! Why not! Now I can choose to walk or ride and I can get round any RSPB Bird Reserve.

    But there is a strange reaction from so many . . . . it's OK to walk beside me at 1mph and hold doors and be nice but the same people won't be seen dead with me on wheels. 

    I love writer who who uses her rollator like a snow plough . . . . naughty but nice.

    • EileenH
      EileenH davidmelville

      Posted

      The lady with the snowplough rollator had that experience if I remember rightly. Struggling with crutches was acceptable to the daughters but they had a fit when she started to think about a rollator! Somebody else also found her offspring being more knowledgeable about waht she could and couldn't manage comfortably than she did!
    • Nefret
      Nefret EileenH

      Posted

      Yes, families are funny things but I was having such a struggle with crutches in the end that I just went ahead and ordered one.  He's now known (quite affectionately) to the whole family as 'Robin'.  My husband didn't know quite what I had bought and on discovering that it had three wheels shouted 'Flippin' heck (or words to that effect) she's got a Reliant Robin!'

      I've had many nicknames over the last few years, but it's the first time I've been addressed as 'Del'. 

    • EileenH
      EileenH Nefret

      Posted

      I really had decided if things didn't improve drastically by the spring I was going to get a mobility scooter - in some ways I regret not doing it anyway! I can walk for a couple of hours but too many hills knackers me! I still have this question at the back of my mind as to how I would get home...

      So you calling OH Rodney then?

    • constance.de
      constance.de davidmelville

      Posted

      I would love to have a mobility scooter, but we are moving into a, so called

      Sheltered Property in January and builders obviously didn't think of such a thing as a garage, or even a shed, to put such a thing in.  I find even in the lift it would be difficult to turn a wheelchair!!  Obviously we didn't have the sense to think of that ourselves when we bought the place!

       

    • EileenH
      EileenH constance.de

      Posted

      There is one very dainty effort which folds down and will go in virtually any boot - or cupboard. The seat comes off and the base folds like a folding pushchair. Can't remember the company now - was looking at them last week wondering if there was one a teen might accept. She could manage a scooter but I don't know the rules of the road for the ones I found. I think it was German.

      You WOULD imagine that a sheltered housing unit might have a place for such a thing - given the sort of people wanting to live in one! Mind you - when my daughter and family were looking at new-builds with the help to buy scheme only the very expensive ones came with a garage - which a mobility scooter would have been the only thing that would have fitted! A cousin bought a 600K house a year or two ago - the garage that came with the house won't take anything bigger than a Fiat 500!

    • EileenH
      EileenH

      Posted

      Travelscoot it is called - google it!
    • davidmelville
      davidmelville Nefret

      Posted

      Mine is called 'Harley' and no, I don't have a leather jacket and long hair 😃
    • davidmelville
      davidmelville EileenH

      Posted

      i got a Pride Sports GoGo which comes in three bits and lives in the back of the Volvo. It is truly a doddle to get in and out and is very small but has a bigger battery and wheels so it's goes most places from public footpaths to John Lewis. But I also looked at one that folded flat, literally like a tray, very light and so manoverable it will go on planes, trains and anywhere.perfect for travelling, airports, stations etc . . But small wheels and big money.

      it was the best thing I did as it freed me to do anything without help and returned true independence as I can go anywhere with anybody.

    • constance.de
      constance.de davidmelville

      Posted

      I looked up folding electro scooters.  Found one similar to yours (I think it is about 1000 dollars in America!).  Great, I thought!  Rang 3 firms over here (I'm in Germany)  and they started at  €3500, going up to 10,000.  Wow!

       

    • davidmelville
      davidmelville constance.de

      Posted

      The Pride Go-Go Elite Traveller Sport is available from MOBILITY CENTRES for about £875 at the moment. There are a number of private firms carrying them at about the same price. Shipping from the UK would make it cheaper.
    • EileenH
      EileenH constance.de

      Posted

      Is there any assistance with getting mobility aids in Germany Constance? In the UK there is a form to sign for patients with a chronic illness which saves you the VAT (MWS). Definitely worth enquiring.
    • davidmelville
      davidmelville constance.de

      Posted

      The price I quoted is less VAT as I took advantage of the relief for 'poorly persons'! . You just sign a firm and its then VAt free.
    • constance.de
      constance.de EileenH

      Posted

      I could easily buy one myself at £875.  I can't get any mobility aids here.  Can't even get a blue badge because I can walk with a rolator for half an hour.  Mind you, I don't think I would get one in Britain either!   
    • EileenH
      EileenH constance.de

      Posted

      No - you have to be pretty much dead to get a blue badge here too! Not that there are many parking spaces that are any better than the ordinary ones! Our supermarket carpark has spaces between every space, like the ones they have around disabled spaces. Not that it helps when an Italian parks diagonally across the space and both the hatched bits on either side!
    • constance.de
      constance.de EileenH

      Posted

      Had to laugh at this one!  We've always been the money lenders (cars, help with deposits for houses, etc).  Must say though neither has ever defaulted on re-payments (we've heard horror stories from friends!).  I wonder what they would think if I asked for a €10,000 gift for Christmas!!!
    • EileenH
      EileenH constance.de

      Posted

      Yes - similar situation here but have a far better way of dealing with deposits for houses: we bought a flat where they needed one for work and they pay rent! The property will be theirs one day. The money was my extra pension provision really since I always worked freelance. Pays a darn sight better than having it in the bank these days! Esca used her unused student loan (taken out just in case) to get a car!  
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.