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04/07/2009 07:16 AM

Hello Everyone .. new here

doowidancerPosts: 10

Hi Everyone, what an amazing site. I'm so grateful to have "stumbled" across it! I'm in the UK and haven't found any online support over here.

I only got diagnosed with SLE a month ago and have been off work for 8 weeks now. I think it came to a head as the last two years were very stressful what with moving home twice, working 4 days a week and dealing with a relationship breakup. I cut down my working week 5 years ago due to the pain and fatigue! It's been a bewildering time and my manager said, just rest and get better, but rest doesn't make it better! I now can't get about without a walking stick as my knee gives way frequently when I walk.

Thankfully I've got a wonderful supportive doctor and am under Guy's & St Thomas's hospital in London which has a very good lupus unit. I am very thankful for this as my last doctor didnt test for this in 30 years!! Can't believe I've been struggling with the joints and fatigue for so long. Oddly enough I've never been able to tolerate the sun and people think it's wierd that I seek out the shade .. makes sense now. Whilst at first I was relieved to have a diagnosis, the implications have been sinking in so it's been an emotional time.

I miss my job in London (can't believe that two months ago I was cycling all round central London!) and my workmates too. I work with volunteers and older people and love it and miss everyone. As I moved back out here to Essex to the countryside, I don't have family close by and live alone. I've never minded living alone until now .. sometimes it can be a relief to come home after the pressures and demands of my job to the countryside and the peace and the quiet .. but right now it feels pretty lonely so I'm struggling mainly with the loneliness .. as well the the pain and fatigue and I'm worried about finances and whether I'll be able to return to work especially as I have a two hour journey each way!

So, would love to hear from you all... sometimes it's hard to remember there's more to life than lupus but I try to stay positive and rest, sleep, rest, sleep and rest some more lol.


04/07/2009 08:59 AM
Posts: 1587
Senior Member

Hi doowidancer,

Welcome to the group. I'm glad you found the site and hope you find the support you were looking for. There are tons of wonderful people here always willing to talk and listen.

04/07/2009 12:16 PM
Posts: 6150
Group Leader
I'm an Advocate

doowedancer - So glad you found this wonderful support site. There are so many wonderful and caring people here. Your not alone in this most of us here feel lonely at times and struggle with alot of issues. I'm like you I can't be in the sun so I too seek out the shade which is too bad because I do love the sun. When I get lonely I just turn on my compurter and head for this site and it makes me realize that I'm not alone in this and it helps me come to grips and I turn my attitude around. I am usually a very positive person and I truly believe that it helps when you have a chronic illness. Just hang in there and know were here.


04/07/2009 02:32 PM
doowidancerPosts: 10

Hi Eva, Many thanks for the response. Great to hear from you. Yes, thank goodness for the computer and internet.. what would we do without it.

It's real wierd being off work this long. I've always been so active apart from the flare-ups for so many years so coming to terms now I have this diagnosis is strange but I've had it so long that in a way nothings changed but everything has. I guess it just kicked up a few levels and stopped me in my tracks.

Positive thinking is useful to get me out of the doldrums at times (too much time on my hands since being off work 8 weeks now) but at the same time acknowledgement and acceptance seem to me to be important. Resistance and fighting it seems somehow to be a waste of energy. Correct me if I'm wrong. So for now, it's time to be real gentle with myself and I embark on the next stage of this journey following diagnosis.

I was due to run a couple of relaxation and stress management workshops in London when this floored me. Ive been teaching this in workshops and courses for nearly 20 years and find relaxation and meditation great for reducing anxiety and pain levels and it has improved my sleep no end.

Ah well, I'll close for now, take care,



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