Anyone near Birmingham?: How folks... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Anyone near Birmingham?

avtargill31 profile image
27 Replies

How folks, just wandering if anyone is near Birmingham that I can have a coffee and a chat with regarding Raynaud's and other stuff? Perhaps there's a support group or similar? Been struggling for a while and now starting to dread the nights knowing that the following day will be exactly the same as the day before. No one seems to understand and I'm getting on my partners last nerve lol. If there isn't a face to face support group, would people mind about starting one up, meeting once a month or so to chat and sound off etc, share a tea or coffee? We could use this platform to arrange it? Sorry for waffling, didn't go to bed till 2.30 this morning as couldn't settle and had a wrestles night and was up at 8ish, so about 5hours broken sleep. Will close for now and look forward to see what thoughts are out there regarding the support group etc.

27 Replies
fairy56 profile image
fairy56

Hello avtargill31, Its terrible when you cant sleep, I can sympathise with you wholeheartedly, but, recently I decided rather than worrying about it, I would use the time by either playing a game on my tablet, reading, or writing poetry! yes I know but actually its amazing the short poems I have come up with!! and has a last resort I have even got up and loaded my washing machine and vacuumed!!! LOL. Your partner may not thank you for that one though, ha ha. You are right that sometimes going to bed can be the hardest thing, I speak from experience, but deep down I know that night time comes whether I like it or not, and that day always follows, on days like that, I just aim for 10 mins at a time, and before you know it an hour as passed. I hope this helps in a small way, love, hugs and positive thoughts and remember, smile and wave, smile and wave,

avtargill31 profile image
avtargill31 in reply to fairy56

Hi fairy56, thank you for your reply. With losing my job to this and feeling like no one knows or cares, it does take it's toll sometimes. Thank you for you kind words of encouragement, it does help. I agree my partner won't share my thoughts if I start cleaning at some ungodly hour lol. Will muddle on through and hope to get happier soon.

Mylreaclairelee profile image
Mylreaclairelee

Hi, I have been thinking about this also. In New Zealand where I moved from a year ago we have support groups in the main cities. I actually live in Shrewsbury, or just south of there, near but maybe too far. Keep in touch i will watch this post with interest xx

avtargill31 profile image
avtargill31 in reply to Mylreaclairelee

Hi, you are closer than you think lol. There seem to be lots of folks that are far far away like Scotland I think. I'm a little shocked that there is no groups here in the UK from what I know any way. I think if there was anything more central, like Birmingham or a similar city, that might help. Will see what responses I get and might just try and start one up.

Mylreaclairelee profile image
Mylreaclairelee in reply to avtargill31

Great idea, it is an hour on the train for me and I have a railcard so is certainly doable. I would love to come once a month as long as it was a city centre venue not that ive been to the centre of Birmingham yet. xx

avtargill31 profile image
avtargill31 in reply to Mylreaclairelee

My thoughts were along the lines of group meetings in a costa coffee or Starbucks type place, informal where drinks are served etc. I'm sure as long as drinks are purchased, they'll be ok and I don't think it'll be lots of people coming. x

Jen3131 profile image
Jen3131 in reply to avtargill31

I am from South Derbyshire so not a million miles away. I work 5 days a week though so have limited availability. Otherwise I would welcome a Midlands group - only my sister has any inkling re our conditions and I find it all incredibly lonely!

avtargill31 profile image
avtargill31 in reply to Jen3131

Hi Jen3131, at the moment it's a loose idea I have. I'm sure if/when we decide to move forward to putting this idea into a working plan, there will be ways of sorting so all can meet up. My partners daughter lives in DE11, don't know weather that's south or not lol. I know what you mean about lonely, it is hard and that's why I have come up with this idea, to see folks in person and share stories and experiences etc.

Jen3131 profile image
Jen3131 in reply to avtargill31

Hi

I have a DE11 postcode! Small world....

Mylreaclairelee profile image
Mylreaclairelee

Or a dept store coffee shop. Great count me in.

avtargill31 profile image
avtargill31 in reply to Mylreaclairelee

I'll see what other interest we get and try and organise through this site so all is open and transparent x

Winfield1 profile image
Winfield1

I’m a hour away by train too so count me in xxx

Bee1011 profile image
Bee1011

What a great idea ! I’m in Hull and have been off work for nearly 6 months and about to go on half pay, oh so much stress and worry as I’m a single mum with a mortgage but I’m too poorly to work at the moment.

I am diagnosed as Undifferentiated Connective Tissue Disease suspected Crest/scleroderma and sjogrens, I have raynauds and lung involvement too I’m waiting to go to combined chest clinic on 19th April.

I am not on any meds yet so each day is a struggle and I’m mainly laid up on the sofa, get maybe one good day a week if I’m lucky. I couldn’t get to Birmingham while I feel this poorly but like you I feel cut off and think a group meet up is a great idea. When I feel better and hopefully get on a treatment plan I would love to meet up with people who understand how difficult it can be living with these so called ‘invisible illnesses’.

I hope you get a good nights sleep tonight as sleep is so important to us.

Take care x

avtargill31 profile image
avtargill31 in reply to Bee1011

I hope you get meds that work soon. Will keep my fingers crossed for you, until I get an attack of Raynaud's I mean lol

Bee1011 profile image
Bee1011 in reply to avtargill31

Thank you

🤣

GGhere profile image
GGhere

Hello Avtargill31

I'm in South Staffs 4 miles north of Wolverhampton. Love your idea of Midlanders meeting up for a chat and exchange of thoughts on coping with our disease. I'm afraid I'm not mobile enough to get there but I do hope you manage to make it happen. Like you I don't always manage to sleep and I've got in the habit of sleeping with earphones and the radio on. Sometimes I sleep despite the noise in my ears and when I can't the programmes help me through the night. I listen to Radio4 Extra on Dab radio where there's a mix of stuff all through the night. I find the days intolerably boring I've even got fed up of watching telly, I think the dark days of winter make matters worse. If coffee shop meetings are difficult you might consider a private group on Facebook where Midlanders with this condition could let off steam and share hints on how they cope.

avtargill31 profile image
avtargill31 in reply to GGhere

Hi Betsie, I never gave Facebook a thought to be honest, what a good idea. That's another avenue to explore. I listen to radio 4's afternoon plays at 2.15pm, it passes the time but missing the human interaction with folks who know what the other is going through. Will see what happens but the amount of support for meeting has made me think is certainly worth further thoughts to try and get something going, perhaps having a Facebook page as well meeting, so all are included weather house bound or not.

GGhere profile image
GGhere

I know what you mean about the "real people" interaction. Getting out and meeting up with others is the best way of raising the spirits. We'll have to see what others think about the Facebook thing - some people dislike FB. I manage to go to a writers' group and an art class which are very local - virtually "just up the road". It helps me feel that I'm back in the real world rather than seeing life via a computer screen. I must admit exploring the world and my hobbies via the Internet helps me pass the hours, especially in the winter time. I also write a daily blog which helps to keep me out of mischief and it amuses far flung friends and family. Well they tell me it does - it's just a load of old lady drivel really. Do you have any hobbies?

avtargill31 profile image
avtargill31 in reply to GGhere

Not really, I was working full time and that kept me busy, but that came to a sudden stop and so find myself stuck here, wandering where it all went so horribly wrong.

Redoralive profile image
Redoralive

Hi, I'd be interested in coming along if we do something like this. I was diagnosed 2 years ago at 22 with scleroderma and since then I've stopped working and lost touch with a lot of people. Would be nice to have face to face interaction with people who understand what I'm going through :)

trunchalobesity profile image
trunchalobesity

Hi

There is a Birmingham support group.

Not sure when the next meeting is but will let you know. We meet at house of Fraser in cafe zest.

I live just outside Tamworth, can meet in Birmingham, if you want a chat and coffee.

It does help x

Mylreaclairelee profile image
Mylreaclairelee in reply to trunchalobesity

How do you find out about these support groups then and also where they are. Is there a registry?

trunchalobesity profile image
trunchalobesity in reply to Mylreaclairelee

I think i found it through the scleroderma and raynauds society. They have help lines, magazine and contact info for local groups,

trunchalobesity profile image
trunchalobesity in reply to Mylreaclairelee

You are quite right it isnt listed in the SRUK webpage, I went to the site, clicked on the contact us web site link - then find support - then support groups and it showed barely any groups. I know they exist and in the former days of the Scleroderma society were well supported and encouraged. I will contact by email one of the other people who meet up to find out who leads and administrates the groups. I know its open to anyone and the more the merrier.

trunchalobesity profile image
trunchalobesity

You are quite right it isnt listed in the SRUK webpage, I went to the site, clicked on the contact us web site link - then find support - then support groups and it showed barely any groups. I know they exist and in the former days of the Scleroderma society were well supported and encouraged. I will contact by email one of the other people who meet up to find out who leads and administrates the groups. I know its open to anyone and the more the merrier.

avtargill31 profile image
avtargill31

Hi, did anyone find out if there was any groups in Birmingham, Someone said there was but it's all gone quiet. If there isn't, Can I nominate to start one up. I know there are folks who said they'd come so would like to start one up, after the snow has gone though lol

avtargill31 profile image
avtargill31

Hi Folks, after seeing a couple of places yesterday (Friday), I think I've found somewhere that is quiet enough to speak/chat and be heard but busy enough to just sit and look at the world passing by outside (if you don't want to talk etc). It's the Railway, Savoy Buildings, Hill Street, Birmingham B5 4AN. It's cheap so ignore the expensive sounding building name. It's situated just outside one of the entrance/exit points of Grand Central train Station. It's now a question of who wants to come and when. If you want to throw some dates and time scales and we can all get a plan together.

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