Long term LSE sufferer

[Gabby1944]

I was diagnosed with Lupus in 1999. I also have Osteoporosis of the spine and arthritis in feet, knees and hips. I am now 73 years of age and was widowed just over three years ago. On the whole I manage quite well and my Attendance Allowance pays for a once a week cleaner and a gardener/handyman. I can't afford a car but I do have a mobility scooter which gets me down to church and our village shop in good weather. My reason for joining the site is that I am feeling more and more and more isolated and anxious with this disease. I have never met another lupus sufferer and am aware that there are a lot of us out there but don't really know how to start making contact. My best wishes to out to you all. Gabs. X

[HazelW]

Contact Lupus UK Gabby1944. They are a wonderful bunch of people based in Romford, Essex & they will be able to put you in touch with someone close to where you live. There are support groups all round the country who do an amazing job.

[Gabby1944 in reply to HazelW]

Thank you so much for this information which I will be following up. I can't believe that from being very much alone with this problem literally within a couple of days of joining the site I realize there is a whole lupus community to help with advice. Thank you again HazelW. Gabby.

[whisperit]

You are very welcome here, Gabby! A lot of us have difficulties with getting out of the house and/or with socialising - my only outings are a quick trip to the local shop or library every few days. And it certainly is a condition that can be very anxiety-making. Although online socialising is not ideal, it is better than nothing, and hanging out on this forum, and "meeting" lots of truly friendly, wise and supportive people here has been a lifeline for me. Hope you find it helpful too x

[annmoran1944 in reply to whisperit]

Hello there whisperit how lovely to hear from someone who understands first hand what a debilitating disease this is. It certainly not a socially friendly thing. After all these years I am still embarrassed by the number of appointments or activities I have to cancel out on. I now have to wait to see how I am on the day. Fortunately I have a group of friends who are very understanding of myself and my condition and are extremely precious to me. A lot of my life revolves around our active village church but my involvement ìs far less than it used to be. I look forward to hearing about you and how you cope. I assume you are a reader as you visit the library. I rather enjoy historical novels particularly if they have a basis in fact. My big difficulty is concentration and fatigue. Thank you for listening. Best wishes. Gabby.

[whisperit in reply to annmoran1944]

OO you've changed your name!

Yes, I read almost constantly. Mostly science (my daughter is writing a dissertation atm, so discussing her work is both interesting for me, and - at least sometimes - helpful to her), but I recently enjoyed the first couple of Trollope's Barchester Chronicles. I have virtually no social life at all now, as my fatigue has become so extreme and chronic that I cannot manage even the least demanding outings.

Instead, I always try to have some little project or task for each day that I know I can complete. I love watching the birds in my garden (and hedgehogs in the summer) - so often my "projects" are related to wildlife - figuring out how to squirrel-proof the feeders is a perennial problem, for instance! Always a cheering reminder that life goes on....x

[HazelW]

Yes Gabby , there are lot of us Lupies out there. I have met some amazing people through Lupus, some of which have become very good friends. Lupus is not the end of world, just the start of a new one ! Good luck.

[Gabby1944]

Good morning Whisperit. I am a novice where the technical side of life is concerned. I sent a reply to your message of yesterday but it just seemed to disappear into the ether. Regarding the name thing I think I have now settled with Gabby1944. I'm afraid I'm a pleb when it comes to science but it must be wonderful being able to help your daughter in her endeavours. I have two sons and however much I love them they are not like having a daughter who is on your wavelength. One son lives fairly close and the other lives in Belgium. Neither is married but the son in Belgium was at one time and has two girls. But that is another story! Hope you are having a good day today. I am being picked up by some friends to go out to lunch so that will be a treat. Gabby.

[Paul_Howard Partner LUPUS UK]

Hi Gabby1944 ,

Welcome to the LUPUS UK community forum. I'm glad that you've found us and I hope that this a helpful place of information and support for you. There are loads of really friendly members here who I can see have already started to make you feel welcome. Please continue to share here and ask any questions.

We do also have Regional Support Groups who organise meetings around the UK. You can find the group nearest to you on our website at lupusuk.org.uk/regional-gro...

We also have a network of trained volunteer telephone contacts who have lupus. If you would like to chat with someone in this way, please let me know whereabouts in the country you are based and I can send you a private message with some telephone numbers.

If you need more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...