Got systemic scleroderma plus raynauds awell some days feel so poorly
Mrs: Got systemic scleroderma plus... - Scleroderma & Ray...
Mrs
Written by
Sarog72
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11 Replies
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According to me the best way to feeling poorly is to distract my attention away from it by going out, doing interesting things and friends.
Hi, I have this disease too with Myositis and Dysphagia, and I have some good and some bad days.
I try and keep my self busy, even though I sit in a recliner chair most of the day, apart from odd trips out with my husband and making cups of tea.
I started looking into my family history in 2007 and made good progress, however after getting ill 18 months ago, it is only now that I have got back into it.
I have found out so much and it makes you feel positive and keeps the mind active, bit like crosswords or sudoku.
I also watch some of the more interesting documentary programs on the TV that I would never have been interested iin before, I am even putting old photos in albums too.
I am lucky as quite often will get a call or text from a friend who has a spare hour to pop in, it is good when it happens on the spur of the moment.
Good luck,Keep busy, works wonders!
Margaret
That's the idea.
I have limited systemic sclerosis, pulmonary hypertension and also suffer from S.A.D which makes it more difficult in the winter months. On my bad days I usually stay in bed for a bit longer then just relax downstairs until my energy levels are recharged. I also suffer with low blood pressure and know that when this drops the only way to get it back to normal is to lie down. My light box keeps me from really losing it as without it I get very depressed and the least little thing has me in tears, so I always look forward to the spring and summer months when I can get out and about in the sunshine. I also visit the gym with a friend once a week, practice tai chi and yoga each week. I find that these really help me to relax and also come to terms with my body and how it is not working properly. I try to keep positive and still do too much so I usually end up in bed the following day but I certainly enjoyed myself the day before. Keep smiling and see what works for you but I would recommend trying tai chi as it is so relaxing and with a good teacher is is easy to learn and no matter what your condition it is done really slowly.
Hello Sarah how's u 😀😀😀
Have to agree with Sarog's posting. I wish I could move around more too..but with three broken vertebrae and severe osteoarthritis in knees/hip and ankles I find moving around pretty difficult. Spend most of my time on the sofa watching telly or reading...used to do paper crafting but since my hands have swollen and my thumb's tendon has thickened with the Ssc it is permanently bent and painful....my lungs are damaged too..three seems to be the magic number with my problems...I have COPD/bronchiectasis and pulmonary fibrosis so my breathing is rubbish on any slight exertions. Whoopdedoo.....if anyone would like to cheer me up in what I could do to be cheery I would love to read about it. But, good luck and improved health to all on here.
Oh....and if anyone can tell me if they also have weird hot-cold sweating episodes to make me feel I am not alone I would be grateful!
Yea same here luv some days I get so depressed awell got a Gud husband n daughter we have to keep going under 3 consultants sometime feel that they don't listen to me xx
Sorry to hear about your illnesses. I have Raynauds and now the weather is cooling down its out with the thick gloves. Don't take any medication for it, do you?
