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Hello Claire


I have got rather behind in reading your posts. I have been having quite a time of it with my own gastro issues since the beginning of of February and have been in hospital more than I have been home. I can sympathise with your daughter's fatigue being at the same stage myself just lately. It is so disheartening being so tired all the time.


The reason I am posting, actually, is not to go on about myself but to offer you a bit of support with the schooling issue. When our daughter was 15 and 16 she was quite unwell with Asthma and other chest illnesses and the accompanying stress. She too is a very bright person and at that time we made the decision to remove her from her usual school and enroll her with a Correspondence School. She was doing the first year of external exams, the work all came through the mail and a tutor came from time to time to see that everything was going OK. I was the supervisor.


As it turned out for her she passed the exams for that year and was able to return to day school the next year. It was quite a tie for me, but I didn't have to go out to work so I would have to say that it was the best thing to have done. In the end she didn't stay at school much longer, she wouldn't have been able to cope with University so she did some business papers and was fortunate to get the first Office Junior job she applied for and from then on in she was fine.


My daughter's health issues are nothing like Sclero. (don't I know it) but I think that taking a bright motivated teen away from the stress of day school - or "medical" school is not such a bad thing to do. I know what I would do in your position. Schooling here in NZ is quite easy to organise from home and I presume the same freedom is available in the UK.


I am hoping that you can work something out without too much stress.


Warm hugs and best wishes



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Hello Claire


Yep, this disease is huge and for a time consumes our whole lives, not because we are weak or we want it to, but because it is so physically devastating. It can get better and for some it really, really does but whilst it's active we must, must, must treat ourselves with the utmost care. If I find this difficult as a disabled adult I can't imagine how difficult it must be for a young person who still wants to get up an go!


Home schooling may well be something to consider in the interim but your daughter could still have her friends round to visit etc so she's not totally cut off from her peers.


As hard as it is we can't pretend we can live the life we had prior to scleroderma and the sooner we accept this the sooner we can adjust to what we're actually living with now. Do remember though that it can get better so what your daughter is living with now she may not be next year or the year after that.


Take care.


PS Claire, have a look at our video about Fatigue in Scleroderma, maybe your daughter could watch it also?

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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