My Reynauds over the past 17 years has now progressed to Scleroderma. I am finding it difficult to cope.

[titanicus]

I won't admit that bleeding of the bowels worries and embarrasses me. Why am I broadcasting this to the forum? Together with various other problems(scleroderma based), at this time of year I feel like I'm falling to bits. Does anyone have any advice?

[flickchick777]

I hate those times where I feel like I am broken and a mess. Like my body is slowly falling apart. It is very challenging! There are times that I realize it could be worse, and I am able to deal, but then there are those times that it is worse, and that is when I struggle. Durning those times, I don't want to get out of bed, no matter which way I move, I'm in pain. And trying to use my hands in the morning to get ready, yeah...not a happy thing, and I already despised mornings. However, as a teacher, my students and teaching keep me going! Focus on the positives!! It helps to push through the pain, even though it is easier said than done.

Also, remember, you are not alone!! It helps to have people truly know what you are going through and can commiserate with you!!!

Hang in there!!!

[titanicus in reply to flickchick777]

Thank you for your reply. Bad days at black rock with depression, always at this time of the year with cold weather. Will fight the fight, I am getting used to overcoming it. Thank you again for your comment, it means everything to know your not alone. God bless.

[SRUKadmin Partner]

Sorry to hear this. Please remember you are never alone.

[titanicus]

Thank you for your comment. Just going through a bad patch. April'ish seems a million miles away. I appreciate the caring attitude of everyone .

[AliW]

Bless you. . . . With what we have to deal with its hardly surprising we get down. . . As Mayflower70 says you are not alone.. This forum is here for support . . X Xx

[zenabb]

Absolutely it is very hard. I find that when I am doing interesting things I don't think about it. Do you have interests?

[Hidden]

No you are not alone Titanicus. We all lean on one another to feel stronger. It was my turn last week, and you were there for me with your kind words. I want to sit across the kitchen table and be sharing tea and cakes and talk about our problems and about nice things too. This cannot happen, but we can do this in effect on this site. Take care and know you are not alone.

[titanicus]

Thank you again for all your kind comments. It's nice to know we are in a special club where we can support each other. God bless all of you.

[overnighthearingloss]

I often try not to look at the whole picture. To do so can bring you down and that does no good.

So I compartmentalise the different things and in that way its easier to deal with the whole. I only worry about the most concerning aspect at any given time. Its not that I forget the rest. Its just that its too much to take everything on board at once.

Try to find humour in situations. I am not saying that the condition is funny. Just that to find a way of reducing its effects through humour can help.

[living-the-dream-ssc-ray]

Hiya - Ive had my body hijacked with this diagnosis for over 16 years now, my survival tips would include to take one day at a time, and if you are having a more challenging day due to the symptoms, be kind to yourself and respect the symptoms, as it maybe that you will feel better the next day. Since hitting 40 last year ( 16 years post my medical sell by date, given on initial diagnosis), I now only do things that make me feel good, as well as I am mindful as to my diet and have a daily bathing / moisturising routine which has helped me to almost reverse my skin involvement - 'a first' in Prof Denton's experience. Due to having had my childhood dreams being crushed from this diagnosis, it is now my life's mission to get the diagnosis put into the medical history books! I have written a more extensive survival guide on my blog cosmicfairy444.blogspot.co.uk ~ September post! I believe that together, we can all help illuminate the raynauds and scleroderma journey to the research medics, helping in the discovery of not just a cure but preventative measures from having your body hijacked and turned to blue stone wishing you all a very happy and healthy 2014 with a return to well being thrown in

[titanicus in reply to living-the-dream-ssc-ray]

Thank you for your reply. I do take one day at a time. The fatigue is the worst thing so I have given myself 3 days complete rest as I find that is the only way to get back ' in the land of the living'.

Christmas and new year is always a bad time, but I am a fighter and will battle through, it makes it easier to know that yourself and others understand. Take care.