Does anyone know of how to find out if there's a Lupus support group in my area?

I moved 6 weeks ago to a new area to live at my boyfriends house, I'm REALLY struggling at the moment, still don't know the area enough to get about, still not got a job (therefore no £), find the benefit system a waste of time in the past & struggle to cope with all the paperwork anyway, so not claiming (even if i tried, i have no £ to get to jobseekers appts.

I've no doctor yet (or dentist), no real friends nearby, no mobile credit to chat with friends. My fella is going through an access battle with his ex over their 1yr old child, plus his bankruptcy, my 71 yr old dad got VERY badly beaten up (he's a pacifist!) & my younger brother has bi-polar & tried to commit suicide & I guess all of this is causing me more stress, along with my Lupus! I'm getting to the end of my tether & need some support, recently I've not had the strength to carry on, suffer insomnia, bad headaches & been getting bad pains, in the midst of Lupus flares & my memory deteriorating, along with any confidence of getting a job...worried I won't be capable to do jobs like I used to (my spelling much worse & struggle with figures too-almost like dyslexia, plus the fatigue etc).

I don't like taking conventional medicines, but the strongest corticosteroid creams not working so well now on my DLE (the last Dr before i moved said I'd have to go on immune suppressant pills if/when the cream stopped working). I need help & don't know where to turn....? (don't want to maybe 'burden' my fella with it all, as he's enough on his plate & doesn't understand Lupus). I'm usually a happy go lucky person (well, the last few years), but I can't seem to muster up the energy to 'pick myself up' in any way.

17 Replies

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  • Hi Smiler1,

    I'm so sorry to hear that you're having such a rough time at the moment. The stress you must be going through is not great, especially when you have lupus.

    LUPUS UK have support groups all across the country. What area do you live in? I can put you in touch with a group and our trained contacts that are nearest to you.

    Paul

    LUPUS UK

  • Hi Paul, thank you so much for your reply.

    Thank you, I know a lot of folk are/do have a lot worse going on & am thankful my health isn't as bad as some others-my heart goes out to them. But no, it's not great & I find it hard to differentiate between symptoms of my Lupus & 'normal' feelings/ailments.

    I now live in the Tyne & Wear-Newcastle area.

    That would be a great help if you could put me in touch with a group please :)

  • Hi Smiler1 hope this is what you were looking for

    NORTH EAST LUPUS GROUP

    Chair: Andy Taylor - Tel: 01642 711559

    Email: chair@northeastlupus.org.uk

    Contacts:

    Bob Fulton - Tel: 01913 875136

    Stephanie Matthews - Tel: 01912 645634

    Carol Maguire - Tel: 01912 630834

    Website: northeastlupus.org.uk

    There is also a good group on facebook if you are on there called Lupus north east England which would put you in contact with some local people, I hope you get settled in soon and get everything sorted

  • Hi Cathy, thank you VERY much for the info, it's gratefully appreciated!

    I'lll look up the NE Facebook group too.

    Thank you :)

  • I can't find the group on Facebook....it's not showing on the search...

  • Hiya,

    The North West group have a group on Facebook, but I don't think the North East group does I'm afraid.

  • Hi Paul, thank you for that :)

  • Hi Smiler1 sorry hadn't realised it's a secret group so you would need to be invited, if you send me a private message on facebook I'm Cathy Lupus Wratten I will get you an invite

  • ah, no worries :), secret group? I wonder why...especially when the more awareness about Lupus is brought about-the better!.. Ok, thank you, I'll have a look for you, thank you :0)

  • I cant find the NE facebook group either, where in the north east do you live, I am just outside Amble. Lupus is the pits and I am guessing we all feel alone and that no 1 understands, I keep getting told by my boss not to let it get to me but thats cause he wants me to open the shop again, which means 7 hours on my feet 6 days a week, which in turn means 6pm bed with shit loads pain. Its no life for anyone, all we can do is try and support eachother. I joined the lupus is real group o facebook as well, I habvent contacted the lupus north east group but think it would be good to go o a meeting to see what other folk say,

    Good

    luck pet, who knows we might meet at 1 of the meetings soon

    #

  • Hi luupysue :),

    thank you for your reply :).

    I live just outside Ryton area (don't drive, but have some friends at Whitley Bay..).

    Yes, it can be the pits & yep, I'm sure most of us do feel very isolated & not understood..

    Hmm, that's easy for a non-Lupus sufferer to say that to you!! (re your boss), I guess you maybe off sick from work then?

    Did you tell your boss you have Lupus before you took the job?

    I empathise with you, the pain caused by standing for long periods can be excruciating!

    I'm very concerned about my getting a job, really want & need to work, but don't know whether to disclose my diagnosis to prospective employers...or only tell them if they ask about medical matters...I was already in a job when I got diagnosed last year, luckily for me, my then bosses, had already become my friends & when I had the biopsy, they gave me the evening off! & let me keep the fluorescent light off in a room I had to work in! :). I tried to cover up how hard work I was finding the job (rather physical & on my feet) as knew that I had only a few months left to work there as it was a seasonal job.

    But I'm not eligible for any disability benefits & the bulk of my work has been in retail....& as I'm sure you're aware, most shops have fluorescent lighting & my Lupus is very photosensitive...so if I work in retail again, it may just make me more ill..

    Yes, support is great! & all we can do.

    I agree & I'm going to contact the NE group.

    I can't find the Lupus is real on Facebook...wondering if FB changed the searches, as less & less are able to be found!

    Thank you :0), I wish you lots of luck & better health. If you ever want to chat/let off steam etc, I've got big enough ears & shoulders ;>.

    Yes, maybe we will meet at a meeting 1 day (tho' last meeting on NE Lupus group looks like it was in November last year & no new dates on the web site yet..).

    Take care.

  • smiler 1 have left you a comment on the facebook northeast england lupus group further up the page.

  • sorry me again you might be able to get through by sending an email to this facebook address lupusne@groups.facebook.com xx

  • Ah, thank you very much Cathy :), much appreciated :))

  • Hi, recently diagnosed also (Nov 2011), still tring to find info regarding meds from people with experience. Had a couple of months on hydroxy but came off after feeling sickly etc. Would be good to speak to other people with some experience of this to help with a long term strategy, or is that just pie in the sky.

    Paul

  • Hi Paul,

    If you'd like I can send you out one of our information packs with details on lupus medications.

    If you let me know what area you are in then I can put you in touch with a group in your area.

    Paul

    LUPUS UK

  • Thanks Paul im in the north east, if you pm me i can give you my adress and would welcome an info pack, thanks.

    Paul

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