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little steps

well, work has been interesting, since my last post where I had been moved to a less stressful/ demanding area I have actually been on the main area more lol

I have made some progress however, have been able to do some work things that I couldn't do for he last few months, however there have been repercussions pain like you wouldn't believe in my neck/ shoulders.

Managed a walk in the sun yesterday to the local Tesco, then felt ok and went for a mooch in the range shop a little further down the road, then visited a friend on the way home so a nice day.... then noticed had developed a rash all over my arms and a little on my face so no big problems, then got to eleven o clock and the pain kicked in and low and behold 1 hour sleep and pain killers and diazepam to control the symptoms... was it worth it I hear you ask... I think yes as even for a little while I was doing normal things again, as regular readers of my blog are aware I try and stay positive throughout, I do get emotional for no reason, I do get scared what the hell will happen next but Im still here making the best of it and will be seing Dr lovey my rhumatologist next Tuesday so the fight to kick this things butts just starting, long road ahead but I WILL WIn this battle. little steps....

hope everyone is doing ok and have enjoyed the weekend as much as possible.


5 Replies

Hi Scoobydoo, I have to say that ive done the same and gone for a lovely walk today in the sun. Did put my sunscreen on and so far so good but my blooming back and legs are throbbing and so is my head, but hey, as you say, it was lovely just to be out with my daughter and it was worth it. I just think that I can't put my life completely on hold and not do the things I enjoy, so I try things out and hope for the best. Sometimes it gets me down and other times I just go with the flow. I would love to be able to go for a walk and be pain free but its not going to happen so its either put up with the pain, or stay in and I'm not prepared to give in to this horrible disease. Take care of yourself and keep positive. xxx


Hi, just want to say, I can't understand. I also get flares, the worst flare I had was twice and both was the joint pain and spasim. -t was so bad I could not get out of bed, i could not self get dressed, I went to my rhumatologist and she prescribed me malaria pills, It wasnt a week and all my pain was gone. But I still get very tired I also get my days then I am depressed ect. I had to stop work, because as soon I stressed then I cant consentrate and get foggy brain, I hated it. It is going much beter with me now That I am at home. Hope you enjoy your walks and keep the head high. Please excuse my English I am Africaans and trying my best lol. Xxxx


just when all was going reasonably ok... someone's broke in the shed and nicked my bike. not worth getting stressed over, just hope they get injured and come to my department :P


Hi Shereenm . I know exactly what you're saying because there are days when I can't move. I too recently had the muscle spasms and was given diazepam and it was awful. I couldn't walk or move my head. but fortunately, I have days when the pain is not so bad, although it never goes away, and I just try and do what I can when I can, otherwise I'd go nuts. Depression is awful and I find getting out of the house and getting fresh air makes me feel better mentally, even if I suffer physically after. I too had to give up my job, which I loved, and then I lost my Mum and I suffered terrible depression, and I still do, but I have to try and do something positive to counteract it, and for me, its getting out of the four walls. And Scoobydoo, lets hope that whoever nicked your bike gets whats coming to them. Love to allxxxxxxx


I am very low on vit D and need to be out in the sun more, however like many of you my symptoms flare up in the sun, especially my fatigue and joints. I try to get out as much as I can during this time of the year when I am having a good day, because the sun is not so hot. During the hot summer I tend to avoid going out, as the sun is too hot and it makes me really ill. This illness can be so confining, so it is really great to be able to get out especially on a nice sunny day.

make the most of it when you can. sometimes we suffer afterwards, but it is so worth it. xxx


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