I went to see my consultant last week for a review - I have CREST. Currently I just suffer with bad Raynauds and things don't seem to be progressing which is good news. However I find I get quite down on my review days and the days on which I go for my heart scan and lung function test. The Raynauds is a problem every day but you learn to work around it. I think going to the consultant and answering all the questions they ask you makes you realise about all the other things that could develop. I don't think you can live your life worrying about "what ifs" but I think the days when you talk about the condition in detail are when you really think about what you have and what could happen in the future. I just wondered what other people think. That said you have to live in the now and enjoy life and that is exactly what I am doing!!
Why does my review get me down? - Scleroderma & Ray...
Why does my review get me down?
Hi Emma. The one thing that I always hold in the back of my mind is that noones condition is the same. Whatever category of auto immune they've badged you with, they don't know everything. I stopped taking some medication a few months back and my lungs have improved slightly.
You're right about that - everyone seems to vary with their symptoms and the severity to which they suffer. I suppose you just have to roll with it!!
I've given up worrying, I take every day as it comes and live for that day - when anything new happens to me I deal with it at the time. Thats is the only way I can cope with this condition, if I cant do it I dont, if I can I will. But, the fatique and ulcers are a killer for me.
I think that's probably a good moral for life anyway - take every day as it comes and live for that day as you never really know what's going to happen. My life is crazily busy and I am able to do everything I want to do so I consider myself really lucky!!
It is true that not everyone that suffers with CREST will have all the symptoms. I have had this for the past 10 years and so far (thank goodness) I have managed to cope. There is not much help out there so I tend to rely on sites like this and research in the internet to find out what to do with any new symptom that I get. My latest one is chronic fatigue and trying to hold down a full time job is quite hard but like "Anteater" above says you do what you can and what you can't just has to wait. It is difficult at times to get people to understand that you are not well, some just think that you are either lazy or should get more exercise.
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