Anyone living in the Grimsby/Cleethorpes area?

[Silvermyst]

Sometimes I feel that I am the ONLY person in the world that has Lupus... but maybe I am just the only person in my area... but I doubt it

Would be nice to know that there are others close by that have similar issues to mine, not that it really matters in this virtual world we live in, but it would help to feel not quite so isolated...

Sooo if you do let me know, would be good to share experiences

[gummy]

hi silvermyst i live in hull humberside just over the humber bridge and i understand how u feel i have i feel the same a lot of ppl donr no or understand wat lupus is and what it does and how we feel just because our illness is invisable and we look ok ppl dont now wat to expect xxxxxx

[Silvermyst]

Hi there, thanks for getting in touch. Agree with you that people are generally clueless about Lupus unless they a. know someone with it, b. have it themselves or c. work with people that have it... As far as I know, there are very few people locally that suffer with it, certainly not enough to have regular meetings like in other places, which I think would be good for people in our position x

[beckside]

Hi Silvermyst I live in Lincoln which I suppose in rural Lincolnshire is not too far away. I took ill 2 days before I retired. I was diagnosed with probable Lupus after being admitted to hospial this time last year after having flu like symptons for 5 wks. After I was discharged home I found it difficult to get upstairs etc, turns out they missed I had pleurisy, which unfortunately has left me with long term problems and turned my world upside down. Like you I sometimes feel I'm the only one with this disease. My GP has no other patients with Lupus and the Rheumie Nurse who has worked at the clinic for 20 yrs has never dealt with the likes of me, and knows very little about the condition. I like this site as knowing someone else has similiar symptons is weirdly comforting for me. Currently I'm on mycophenalate and prednisolone (which I'm tapering down at present) I have gained nearly 4st with the bl - - dy steroids,it doesn't help that I am restricted in my ability to excercise. There are no support groups in Lincolnshire I think the nearest is in Yorkshire. Sorry to hear there has been a decline in your health recently, do take lots of rest and hopefully you will bounce back soon.

[Silvermyst in reply to beckside]

Hi Becks, what a nightmare for you, am so sad that it hit just at the wrong time... My GP has no other patients either, I know of no-one else in this area at all, really think it would be good to have a group or something that we could attend. Just a get together once in a while to stop us from feeling so isolated and maybe be there to support each other when things get tough.

I'm right there with you on the steroids, I too have gained lots of weight, I barely recognise the person looking back at me in the mirror these days, so I want to try and get some of it off, but its difficult as mobility is very limited. Feels like you can't win doesn't it?

Thank you for your good wishes, I am resting up after increasing steroids a few days ago to hopefully calm it down, like i said, cant win lol.

All the best