Scleroderma & Raynaud's UK (SRUK)
7,246 members3,435 posts

Who feels lonely?

Why does it seem odd to others that I want to find a person who I can talk to about the way I feel and not feel like an alien? At the moment it feels like a club but I am the only member. I know this illness is rare but I am not the only one, I have lovely friends but don't want to tell them some of the odd issues that I have. Would love to hear from you.

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Hello Debbie, read my reply to your previous post, and I hope it helps xxx

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Hi fairy56, yes wonderful. I have been unwell for about 7 years and it has taken me this long to get this far. If I could I would jump to the moon and back- needless to say I can't but I am willing to give it a go. Not really sure where to begin. I am generally a jolly little person and try to take each day as it comes, I am 66 years old physically but 7 going on 9 mentally. I think that means young at heart. I would love to be able to discuss many things with you if you would like that. Best wishes xx

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Hello Debbie, I am all for being young at heart, perhaps you have read my post from yesterday, " the joys of school summer holidays" I was diagnosed with our friend Scleroderma and her brother Ray nauds, 5 and a half yrs ago, and at first I didn"t really think they would change my life, but as so many of us know, they have a knack of throwing different symptoms at us, at no set pattern, guess you can say it keeps us on our toes, (thats if we still can). I try not to read too many articles about our condition, I find living with it is enough information I need at the moment, and being on this site helps an awful lot. Take care and anytime you need to have a chat or even a little moan, we are here for you, plus you can always send me a message via the "chat" selection. xxx

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It's not very interesting for others, but if you talk about their complaints you can slip in yours. So make friends, don't be lonely. We need others. An we need to laugh.

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Hi I wish id seen this earlier would have loved to have taken part in the conversation, I had a biopsy 2 weeks ago with suspected Morphea and have at least another 3 weeks before I get the results. In the meantime I'm in a lot of pain in my arm where I have the hard skin it feels so achey and am really stuck with what to do does anyone else get painful stinging arms?

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Hi Debbie. It Is a very strange condition as everyone seems to have different problems with scleroderma. I wad diagnosed about 4 years ago and it has mainly affected my feet. Where has it affected you? I live in Yorkshire and see a consultant locally but I also travel to London to see Professor Denton. It is quite a trek but I think it is worth it with it being so rare. He is an expert which is not always do with local consultants although mine is very good he is not always up to date with the latest developments. I try not to think about having scleroderma too much now. I scared myself silly when I wad first diagnosed but reading too much about it. Always here if you want to share

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Hi ilovedancing,thanks for replying to me. I have scleroderma going through my internal ?organs and so life is full of surprises. I also have trouble with my mouth and eyes. I can only open one today, not so bad, you do get used to it. Are your feet painful and do they itch ? Have you met anyone with scleroderma? Look forward to hearing from you.xx

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Hi, I know what you mean about being lonely. When I 1st had my symptoms etc, panic was an understatement. I have secondary Raynaud's and all the silly stuff that goes with that, all I can say is there are folks here that will listen and help if they can. We're having a bit of an informal get together in Birmingham this Wednesday, depending on where abouts you are, you're more than welcome to join us, you can bring a friend or partner to take the stress out of it too.

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I find that when people ask something and our disease is a factor, if we tell the truth we are negative even when stated as a fact not as complaining. Very few understand and even fewer want to try. If your not up to something others take it as a personal rejection. It was worse before I got to acceptance. You are trying to figure it out by talking and healthy people don't like that. You are also trying to learn what works to help you. It took me 3 years of depression and anxiety to accept. Talk on forums like this helps. Try to go out, try something new, anything to let you forget for a bit. Also be selfish and pamper yourself. Taking care of your needs helps you get emotionally stronger.

It is lonely.

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Hi Roxanne, Thank you for your honesty. Already I feel better knowing that I am not odd to feel this way.xx

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Hi Debbie, loneliness is hard to bear. You are doing a great thing by reaching out to others. Some days are painful and you need to rest. When I have rough days, I sleep in a little and try to do some exercises to strengthen my muscles and improve mobility. I use the time to read a little and maybe maybe work on a project. Talk to friends and reach out here. I am here and will reply. Take care of yourself.

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Hi beaglab, thank you for replying to me. Its a sad fact but its actually good to know that I am not the only one who feels a little lost and lonely. Cheers.xxx

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Hi Debbie, do you have a journal to write down your thoughts and feelings? Please keep a list of phone numbers of people you can call when you are lonely. Is there a women's fellowship group at your church? Participating in that might be helpful to you. In addition, a little volunteer work might ease the loneliness. I hope to talk with you here again soon. God bless you.

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