diagnosed with LUPUS in 2000,wife gone in 2001,house gone later that year,minor stroke,heart attack ,broken back,loss of vision in one eye,

[jeff61]

tired forever,buckets of pills,visits to doctors and so many arguments with DWP trying to get some help,Is there any point in trying anymore!!!!!!!!

[MaryF]

Have they checked you out for Hughes Syndrome.. there is a data base of professionals who understand Hughes Syndrome.. as some with Lupus will also have this disorder! Mary F x

[Slowmo]

Oh Jeff, you really have had a nightmare of a time, and undoubtedly all this stress will only contribute to your symptoms. There is always a point in trying, although at times it may not feel like it. On the positive side it would seem as though you've been through the worst of it and things can only get better from here on in.

It may be worth seeking help with DWP from the Citizens Advice Bureau and also the RNIB may be able to offer support due to your vision problems. There is help out there in a number of areas, and in the meantime you always have this site to vent your feelings.

All the best.

[jeff61]

Thanks for the kind words it just seems that there is always something else waiting for me around the corner.I've tried many times with the DWP ,Citizens advice and believe it or not even though i've lost the sight in my right eye i am not considered partially sighted.Once again thanks.

[pattismith]

There is a site on facebook called Fightback and another called Atos Miracles, they both offer free help and advice and are so useful. You have already come such a long way already and even though you don't think it just now, things will get better. You can't do it all on your own and not always easy to ask for help along the way. You are stronger than you think - stay strong, we are all here for you on this site xx

[jeff61 in reply to pattismith]

Thank you patti. Xx

[Purpletop]

That sounds rough indeed. No wonder you're questioning the point of it all. I don't think anyone is any the wiser about that but we take it a day at a time and somehow fight for survival regardless how bewildered we are. Hang in there, we never know what is around the corner, life is full of surprises, not all bad.

[daisyd]

Hi Jeff, I don't know the Answer, but just want to say I feel for you, it must be awful.

I have Hughes syndrome as Mary says can have a lot of your symptoms too, I don't know how you feel about antidepressants, but I would not have coped with out mine.

[twist1]

Hi Jeff, I am so sorry to hear your troubles and your sentiment to just give up rings a bell in so many of our hearts. The sheer desperation and frustration of this illness is overwhelming. I know it is always good to fight and I have had years myself when if someone said that to me it would have fallen on deaf ears. But I did fight even in a wimpish way some days and for me things did get better slowly and hopefully will continue to do so.

All I can say is hibernate when you have to, recuperate when you can and nurse and give yourself as much TLC as possible it is easy to forget that this is our bodies way of giving us a wake up call that things need to change.

Like Daisyd would highly recommend antidepressants, they gave me a lift when nothing else was working and gave me an opportunity to include laughter back into my life which is the biggest medicine any of us can get

Stay strong x

[Jo883]

Hi Jeff - not much advice I can give you that hasn't already been given above. So this is more sending gentle hugs and well wishes. It's so easy to feel despondent when you are in constant battle and you need what strength you have just to function. Christ knows I feel like that just going to the drs - I have this whole ritual of psyching myself up to be assertive whilst trying to keep my emotions in check. This whole thing with the DWP seems wrong to me - I have read so many posts where people have struggled when instead they should be supported because of the very impact the stress has on there health - I haven't gone down that road yet because I still don't have a definitive diagnosis sero neg connective tissue disease plus cervical spondylosis. I do need help at home and taking my children to skl etc but I'm sticking to handling the Drs and dealing with the long waits inbetween hospital appointments before I tackle them again. But I think I will just see it as a challenge and keep chipping away at it - I think they make it deliberately difficult, bloody pen pushers - I'd really like to see the inner workings of these offices and how these paper shufflers make there decisions. Keep calm and keep on fighting - there isn't one person on this site that doesn't understand what your going through. Dig deep xxx

[Vals-pal]

Hi Jeff, as with the others I don't have an answer to your problems but I can relate to most of them, but I have the support of a loving husband which is incredible. Are there any Lupus support groups in your area, if there are, at least you'll be able to talk face-to-face with someone, or on the phone to a trained supporter. Good luck

[helentad]

Hi Jeff, so sorry to hear about your loss and all that you have been through. I think most people with Lupus have felt like giving up at one point of another. Have you contacted Lupus Uk or any other Lupus groups as they might be able to offer help or advice and the people that go to the groups are really friendly. With ESA and PIP I would definitely contact Fightback as Patti suggested. They are all volunteers but are doing some fantastic work getting decisions overturned and one of them has even been invited to the Conservative party conference today to talk about the work they are doing and why. When filling out any dss forms always use your worst day as your example and put everything down even if you think it might sound daft it could be the residing factor. I have been through the ESA transfer but had great help from my job Center and luckily didn't need Fightback. One tip when sending anything by mail for dss is to send it recorded delivery as they have a habit if loosing things.

With your eyes might I suggest that you contact the RNIB as it seems ridiculous that you are not classed as partially sighted. My brother in law has lost sight in one eye through diabetes and he has that classification.

Hope something somebody has said something on this page has helped. Good luck.

[Mainshah]

Hi Jeff,

When I read your your post I cried because I nw hw u feel, I was on the point of just giving up because I had a miscarriage due to lupus but with the help of my family and friends especially my husband I got stronger, hope things get better for you soon.

"With every hardship comes ease" that's what I all ways remember x

[bam1993]

Just to say that I think all the above advice to be good and I cannot add to it......but just wanted to send you big hugs!! and say that you will always get support from this site. Hearing your story makes me feel very lucky, and but for the grace of God I have not, so far, had it as bad as you, although at times I have felt so despondant, posting on this site, where other people that truly understand will post back, and keep you in their thoughts... Take Care and again big (gentle) hugs to you! xx

[tim47]

May I recommend and organisation and their website for helpful advice with benefit claims. Benefits and Work has been going a good few years, I remember them assisting CABs when I worked for them many years ago. Caring knowledgeable people with an informative website at benefitsandwork.co.uk/

Best wishes Jeff

[Carcrashgal]

I add my thoughts and prayers to everyone else's and I wanted also to add that tho it all feels unbelievably dark, there is *always* hope. I don't want to make this about me, but I am living proof that you should never give up: crippled at 16 after misdiagnosis, then car crash victim (last of which should have killed me), then (unfaithful) fiance got involved in bad stuff (not his fault but still) I ended up bankrupt, lost house, those possessions not stolen were damaged by flood and fire (and ex-fiance hadn't paid insurance of course!), then sacked from job I adored, in wheelchair & constant pain, then much illness and many ops - then a terrific doctor pushed and so I now have the lupus diagnosis that means I'm not imagining things, the CPAP machine which means I'm no longer terminally exhausted and preoper medication. I also have a new husband (who will *not* end up inadvertently destroying my life!), a job I love and (mostly) can do at my own pace, and a house on a mortgage - which 15 years ago I would have thought a pipe dream. In 2006 I felt like you. Others have listed places to try - Fightback, CAB were good for me, sorry they've not been for you. Def try RNIB. My local social services dept were v good (once I got to the top of the list). Most important advice ever? NOT DEAD. So fight!