Things r getting worse !

Hi all lately everything has been getting so much harder . Been really unwell no energy sore everywhere sleeping a lot again, my face keeps falling at one side just waiting now on a date 2 get into hosp to get tests on way my face keeps doing this. I have lupus and fibro docs say my face looking like stroke but my head isn't showing up these signs . This is happening me everyday now. All I wanna do is be a 26 year old girl party with my friends and family and have a great life with my partner but even these simple things seem so much harder. Have it in my head that I wanna start getting out even 4 a 10 min walk but this is so hard as the mood and soreness I wake up in is stopping me then I feel worse 4 not doing it. I just can't stop being so down. Then my weight that's another thing, I just feel like a big fat mare !! Would really like 2 start a few hobbies but am so scared 2 do this incase I feel at these again !! X

2 Replies

  • Ruth, I think the idea of a hobby just for you is a brilliant one. I don't know if it's possible for you, but I found joining a choir saved my life . . . I needed to do something for myself after I broke my neck, so I started singing lessons, and after about 6 months my teacher told me I had to join a choir - and although I was *so* scared, it turned out to be one of the best things I've ever done. It doesn't have to be anything special - these days there are plenty of community choirs (where you don't need to be able to read music). And lots of churches have choirs of varying abilities. But it doesn't have to be classical - a friend sings with a gospel choir and swears by it, and others sing show tunes or pop . . . My choir has always taken my disabilities in its stride - there's always a seat for me, and when my hands aren't good enough to hold music I use a music stand. If I can only do half the concert, that's accepted . . . and one year on tour near Carcassonne in the south of France, the choir had a trip to a castle in the mountains - and determined I wouldn't miss it, the basses carried me in my wheelchair up to the top (which was worth it just to see this fit Germans round the corner and see me sitting at the top of the mountain in my chair reading the guidebook and admiring the spectacular views!) But it's not just the friendships I've made - although those have been invaluable. It's the actual singing; - it's improved my health, helped with the depression and definitely improved my lung capacity.

    And I think your idea of a ten-minute walk is a really good one - so much so that I'm going to follow your lead. If all I do is walk around the block once a day - well, that's still better than I've been doing. And maybe after a couple of weeks I'll be able to make it two blocks . . . I think the hardest thing is forcing oneself to start, isn't it? Maybe we should start a 'round the block' club!

    Whatever you decide to do, hang on in there - and best of luck!

  • Hi Ruth_Lderry,

    Sorry to hear that you are having such difficulty with your symptoms at the moment. Are you currently on any treatment?

    I think it's a great idea to start a hobby and also get a little exercise and fresh air by going for a short walk. If you are really sore, why not start off just going for a two minute walk? Then if you find you can manage that, over time you can push yourself a bit more?

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