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Amanda Thorpe

A new addition to the family...

1 post in this topic

Hello All

 

Due to scleroderma I have severely limited movement in my feet and ankles, immobile calfs and reluctant knees, all of which makes bathing somewhat challenging. Now in the early days with sclero I would go weeks without washing...did she really say that...yes I did! You see I was so ill, so immobile and my skin so sensitive and itchy that water was no friend of mine in addition to which I could not get into a bath or step up into the shower.

 

As things slowly improved so did my cleanleness but alas I still could not bath/shower unaided. My alternatives were to wash at the sink which involved lots of towels on the bathroom floor, a sink full of water from which I wet my flannel in and then indescriminately doused myself with it. It was not a very accurate operation with some parts being cleaner than others but it's the thought that counts. My only other alternative was to have my dear husband lift me in and out of the bath. At first this was very difficult for me resulting in many tears although he never complained. Showering was not an option as my balance and overall mobility were not up to the rigours of it.

 

To the now, I had the council send me an occupational therapist to assess my bathing needs and the only recommendation she could make with the limited funds available from the council was a bath chair. Initially I was miffed, I am 41 years old and had visions of off white hoists and huge contraptions clumsily lowering me into the bath and lifting me out again. Reluctantly I agreed to the bath chair on the basis that I could always send it back, nothing ventured nothing gained.

 

Well the bath chair is a delightful sky blue colour and much more compact than I thought. It's very simply to use and enables me to bathe at my discretion which is ideal given that I have started having hot flushes :angry: but that's another story!

 

Prior to being ill I would never have invisiged a me that would for a time discard bathing and hair washing, a me that would spend days in in bath robes and pajamas, a me that would let my roots grow through and not wear make up everyday, a me delighted with using a bath chair. Then again who would invisige having scleroderma, a disease that fundamentally alters your life so much so that I think of my life in two seperate parts pre and post scleroderma.

 

Some people live "la vida loca" I live "la vida esclerodermia!"

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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