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In Pain, Feeling Confused and Alone

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Curls are definitely IN as far as I am concerned.   Short hair too.   I have finally persuaded my hair stylist that I need to see her every 3 weeks.   My hair grows fast and so I need to keep it under control with a regular trim, then it is never too short or too long.   I can still drive myself anywhere I want to go and there is a disabled carpark right near her salon so I am on the pig's back as it were for convenience.


When it gets trimmed I get the full works with flash blowwave but every other day it is simply a dunk under the shower and a ruffle up with my fingers and let it dry.


I have never had natural curls before, and I think it must be a hormonal thing!!  as I get older my locks are getting curlier and easier to manage, thank goodness.


The rest of me gets similar treatment.  No make up except for a little lipstick and a smudge of eyeshadow and I am ready to go out.   I do like to wear flattering clothes in colours which suit me so I do put some effort in  to get things which are comfortable and easy to get on and off.   I know I am much more mobile than a lot of you other girls but I am still plagued by overwhelming fatigue and the ever present incontinence but a good day will always come again soon and I will make the most of it.


Have just been away on a holiday in Fiji which sounds incredibly exotic to you ladies but is not so exotic if you live down here.   Wheelchair assistance at the airport is vital and plenty of reading material to occupy me while I sit in the shade and watch everybody else swimming and snorkelling.   It was so lovely to simply stroll into the dining room at meal time and not to have to think about what we were going to have.   We took the whole family with us and the grandies had a marvellous time in the pool and on the beach.   Easy to be the Grandma when all the entertainment is provided.   Took my swimming things but there was no way I could get in and out of the pool safely and the soft sand on the beach was beyond me so I just had to watch.


It is quite an interesting exercise to start to think about what we CAN do in spite of Sclero.   Just as long as we don't resent missing out on some things.


Best wishes to you all.


Judy Trewartha

(Retired) ISN Support Specialist

International Scleroderma Network (ISN)

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