sorry haven't posted in a while! little update, firstly thanks for all the tips about sleeping been getting better nights sleep with a lighter weight duvet and some nights just putting a pillow under my knee. Also have been crazy busy with school work at the moment.
I've got a appointment with my consultant really soon and we are going to discuss going back in to hospital for steroids again, little but nervous as i don't like hospitals but i find steroids very effective. my wrists are especially bad at the moment and my mum is having to dry my hair as i find the hair dryer to heavy and hard to lift it and reach the back of my head..its little things like this that really get me down not being able to do all the things my friends can..hoping seeing my consultant will help improve my wrists.
i will let you all know how it goes
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soph_holmes
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You are so young to have this disease, you should be out enjoying yourself with all your pals and having the time of your life. I do hope that you will be sorted out, whilst your at the hospital think of all the good things you would like to do and discuss them with the person you are with, to help take your mind off what may or may not happen whilst there. As you say keep us posted. Take care xxx
I have exactly the same thing with hairdryers, and there is this thing that it a stand for hairdryers while they are on, so you just basically stand under it and brush your hair as it drys it. I'll try and find you the link, but it is available on most Aid sites xx
Oh poor you sorry about wrists but pleased that you are sleeping better at least. I think people sometimes imagine that being young is mostly about having fun and that kind of adds to the pressure? I certainly had a hard time physically when I was your age and personally think I have a lot more fun out of life now at 50 than I've had for a long time. My eldest son aged 21 in a week is in the same boat as I was and has lots of physical struggles so you aren't alone and there's a very good chance that things will improve for you as you get older and the disease is successfully controlled and new remedies come in the market. Take care and good luck with rheumy apt and school work! X
thank you! yes i sometimes feel like my friends might think im boring if i stay at home instead of going out all the time when really im just too exhausted! im hoping this will improve soon!x
Hi Soph, gosh I do know what u r going through, my daughter got told thr Friday before half term she had one week to write and learn two A4 pages of German for her gcse. We were going away on the Saturday so she had to do it on holiday, so unfair. The same teacher did I at Xmas as well so she is just permenantly exhausted, so can't imagine wot it would be like if she had RA as well, so well done you xx the ideas above of he stands are good and he travel hair dryer. Have you ever seen an occupational therapist as they r real good with suggestions on things like hat. If not ask the rheumatology helpline if they can get u one. Or get a curly perm and then u don't need to touch it ha ha ( joking of course, mine went curly with the drugs would u believe! ) hope u feeling better very soon xx
yes, the amount of work i have to do is so big! i try and use a computer when ever i can as it makes it easier, im always exhausted! will give it a look!
Did u ever use voice activated keyboards? You talk instead of typing! Ask the OT or your college, they should help u manage your condition at school o make life easier for you, your form teacher or head of year might be able to help xx
I couldn't imagine what it would be like to have this at such a young age, With all the stress with Exams and not being able to do a lot of things with your friends, I really hope everything go well for you, Take Care and good luck XX
thank you..trying to not let the stress get to me too much as i don't have long before my exams now..i have some good teachers which help which are positive and very helpful! xx
You are sounding so much more positive Sophie. I'm glad you joined us here. It's great for ideas. I use a little travel hair drier. A voice activated device for your computer. Also taping or recording lectures helps too. You can record on your phone
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