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Just thought it might help if you are new to PMR

Posted , 7 users are following.

gillb
gillb

Having started my PMR journey 10 years ago and now having experienced my 2nd flare up - having reduced to 2mgs eachtime -  I feel I have a lot of experience but little knowledge or understanding of how PMR works it havoc.   However I am once again trying to be positive !!!! although difficult at times - and I wanted to offer a few tips on self help.  My background is an Occupational Therapist so I have spent many years offering advice on goal setting and aid provision to be independent- both which have been invaluable to the improvement of PMR symptoms.  So I thought I'd share a couple of obvious things but which some people may not intially think about especially when the brain fog/pain fog has a hold. Forgive me if I am speaking to those who have already worked this out for themselves.

?1.  Wear loose fitting warm clothes but with a bit of colour or panache to brighten yourself up - I have two pairs of Supermarket trousers with elastic waist and loose legs that are fairly smart but are not my usual wardrobe type of trousers - but I can pull them on over my feet and pull up and down easily for toileting.  I have also lived the last month in a cope of extra sized loose jumpers - warmth and easier over the head when those shoulder hurt so much.  I top this off wih a scarf of varying colours ( probably as the mood dictates- but hopefully to reflect my need to feel brighter). 

?2   A metre square of fleece material has become a comfort blanket - it is light and easy enough  to manage to get round my neck or shoulders whilst sitting or lying in bed - anything bigger i finds involves too much upper limb activity to get in position to help.

?3. Decant steroid tablets into a small pot before going to bed and leave in easy access alongside a  yogurt or something to eat - so that as soon as one rouses early morning one can take the food and steroids without having to try and get them out of the packets and also means you are aware enough when decanting the tablets to make sure you are taking the correct medication. 

?4  My final and best advice is to treat yourself ( if you have the finance - need about  £500)  to an inflatable bath cushion.  I was lucky enough to be working when I had my first bout of PMR and borrowed aids from work to help with the bath.   With my first flare up I spent me time at my mum's who had a bath cushion installed for her use, so I was able to share.  This time - after the indignity of my husband having to lift me in and out of the bath, I blew some savings and purchased my own cushion - it is wonderful - the relief of the warm water over my back and shoulders as I lie in a lovely bath without the fear of getting stuck in the bath is unmeasurable.  So if you are considering it - just go for it - I fully intend in a few weeks that it will go away in the bathroom cupboard to await my Mum coming on holiday or for when I get 90 and need more assistance.  Meantime I know how much better I will feel after a warm bath.

?Thanks to all who contribute on this forum - you have been amazing in your sharing of knowledge and support - Although I don't often contribute I always read the posts and have learnt so much from you all.  I am avidly reading all about the introduction of methotrexate into your medication regimes as now with a second flare up and the fact that I am likely to be on steroids for a lot longer, it is being suggested that that is the way I need to go - I have asked at present to wait until i can reduce again to at least 5mgs and then discuss - when I hope I will have had time to research and be more painfree and clear minded to make an informed decision rather than introduce another toxic drug into the system now without knowing too much about it - any advice for the forum will be appreciated - maybe methotrexate is the way forward.   I wait to see. 

Good wishes to all - watch the daffodils - spring is round the corner.  For those of us in the northern hemisphere that is!!

 

6 likes, 32 replies

32 Replies

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  • BettyE
    BettyE gillb

    Posted

    I bless the OT who encouraged me to use splints for my painful wrists ( OA, not part of the PMR which I no longer have. )

    Like Eileen, I never bath but did treat myself to a shower that sort of massages and is a great comfort but have wondered about the bath cushions. The ones I've looked at have a battery so you enter the bath at ledge height and are lowered down and then raised to get out. The whole idea looks precarious to me rather as do stair lifts.

    Going back to the bath cushion, it's the swinging my legs/feet from floor over the side into bath that I don't much fancy. Have I got completely the wrong idea?

    • gillb
      gillb BettyE

      Posted

      If you are interested in using as bathing cushion Betty you can see the use on You tube - although the models obviously do not have PMR !!!!  I'd love to use it as easily as they do - but use it I do and it is wonderful - a life saver for me at the present.

    • BettyE
      BettyE gillb

      Posted

      Many thanks for info.

      I found the Youtube demo for the Mangar version but it did not show the actual getting on and off which is what I reckon is the precarious bit. I don't see myself perched at right angles on the side of the bath which is quite high and then swinging my feet somehow into the parallel position necessary onto the cushion before lowering myself in. I think I'll stick with the shower.

    • gillb
      gillb BettyE

      Posted

      With my ex OT hat on I'd say  I agree that if you can manage the shower safely then don't put yourself in a position of risk.  It does depend on the height of your bath, your height and your bathroom surroundings - if your bath room is small and you have a sink alongside your bath or even a cupboard to hold onto it probably would be fine - you could have a rail put on the wall to support if there was a convenient position.  You are always at liberty to ask the social Services for an OT to visit and advise you but expect you would have to wait a while!  I certainly wouldn't like to use the bath that is on YOu Tube advert- being positioned in the middle of the room with nothing around it - wouldn't mind the bathroom space but perhaps living insuch a big environment is not as convenient if you have PMR - further to walk and nothig to hang onto!!

    • EileenH
      EileenH gillb

      Posted

      I hate big bathrooms - the Italians love them! Such a waste of space and draughty! When our flat was being built they took a foot off the bedroom, added it to the allocated space for the bathroom and we got a small bathroom and an en-suite shower room. Far more use!
    • BettyE
      BettyE gillb

      Posted

      That settles it, then. You describe my bathroom exactly. High bath in the middle of the room with nothing to hold on to.

      Did you say somewhere that you are in Norfolk? So am I. Perhaps it was you I saw at Dereham hospital when I was prescribed my wonderful splints but you'd  have to be Catherine so maybe not. Thanks again.. and if it was you then even more thanks. The therabath is a great success, too.

  • tory38006
    tory38006 gillb

    Posted

    great tips gillb and thanks for sharing smile

  • Mrs_Hobbles
    Mrs_Hobbles gillb

    Posted

    All very good and lovely advice, thank you! I love that you encourage colour and panache! I couldn't live without lots of colour in everything, my clothes and throughout my house. I cannot wear black, it just brings my mood right down so I don't! I have a beautiful colourful blanket that is my ' Go to' when I need some extra comfort. Also if I could add a little helpful advice (hopefully), a heat pad is great, good to keep on the couch and it's small and easy to bring places! Thanks again gillb 💕

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