30 years of Lupus........

[Angelman1]

30 years ago I had what I thought was bad influenza. I went back to work but never really recovered. I was so fatigued that I had to lie down during the day at work or else I would have keeled over. I was working in a hostel for people moving out of psychiatric hospital and back into the community and thought the illness was due to stress. I resigned my job and then was more ill. I was investigated by every sort of doctor in London and there were strange counts in my blood, but no one knew what they meant. I tried acupuncture, homeopathy, cranial osteopathy and even a renowned healer from Yugoslavia who had cured various famous people of ME. So, I gave up on cures 25 years ago and we had a baby and moved to Bristol. I was referred by my GP here to Ham Green hospital and a young doctor said to me ' so what would you do if you lost a leg? You would carry on and adjust to having one leg, wouldn't you?' At that moment I realised that the fatigue made me 'unemployable' and I immediately registered as self-employed. This was 22 years ago and I have managed to work around this illness pretty successfully. 7 years ago I had problem with my lungs and a lung biopsy finally gave me a diagnosis for the mystery illness.....Secondary Sjogren's Syndrome with Lupus as the prmary illness. These are both autoimmune illnesses that you just have to live with as best you can. I have flares, but a lot of the time I manage fine. Don't really know why I am writing this here, just getting it straight in my head I think.

[Hidden]

wow what a story and you carried on working and all that time with no diagnosis,. I HAVE to lie down by about two or three latest so I ONLY WORK MORNINGS X

[katerowley]

I've had lupus for about 23 years, i was lucky to have got it detected straight away, had my family, but only since i had skin cancer last year, have i found it really hard to get a job, I've spent two years on the work programme with no benefit to me at all.

Well its a case of getting on with it, i had a rough times through the nineties even losing the use in my legs, then i had a big good period, but i damaged my feet temp working for a warehouse that was to tight to put proper flooring down, and things have got worse since then.

[madmagz]

Well done you and what wise words from someone that make an awful lot of sense. I too am a long term lupie and live my life adapted to the way I best cope with it. I was gutted to have to give up my vocation as a nurse but am now doing voluntary work in a hospital so it makes me very happy just to be able to help a few people a week doing a minimum number of hours as that's all I can manage.

It is so good to read positive posts and hope that yours will give hope to others and they can see there is life after diagnosis of such a horrible disease. I lead a very full and active life - as much as my body will allow on occasions I am a bit restricted.

Keep it up and even if you don't know why you wrote here I hope it is straight for you now and you will have given others hope

Madmagz x

[steadilymovingforward]

Wow, how inspirational that you are self employed and work for yourself. Knowing this makes the future seem much brighter and makes me feel that anything is possible and gives me more strength!

[Purpletop]

That's an amazing story, thank you for sharing. Are you on any medication for the lupus?

[Angelman1 in reply to Purpletop]

I have resisted steroids and Plaquenil until now. I take anti-infammatories which do help. I am getting a lot of 'pins and needles' and numbness in my arms...going to see my Rheumatologist next week and will ask about these. I have terrible side effects with most of the medications I have tried over the years.

[mstr]

Thanks for sharing and I love how the words of that young doctor helped you to make a decision that would help you to manage this condition. I wonder if he/she will ever realise the impact they had on your life?

[Angelman1 in reply to mstr]

At the time what he said seemed a bit brutal....but he definitely confronted my thinking that I couldn't work and I was getting depressed about that. I think his inexperience helped!

[Cann]

It is certainly an illness that tests the determination; it is either that or fizzle away! That's what it is like for me, anyway. Homoeopathy helps me. I have silicea as the latest remedy to help with the nail psoriasis. I was amazed how the pain and swelling eased after just taking it once. I have other remedies to help with the various symptoms that flare - Rhus Toxicodendron helps when I feel a cold sore starting, though they are more like ulcers on the nose and lips. It also helps with mouth ulcers, which, dare I say it, I haven't had for a long time since I started using R.T.

Hepar Sulph. helps with toothache that I seem to find is worse during this type of weather - heavy and thundery.

Ruta Graveolens helps with the pain in my joints that can be unbearable in cold and really hot weather.

I could go on, but homoeopathy, good diet and moderate exercise help me with mine; we all have to find what is best for us, but there is no doubt that positivity is also essential.

When I need to rest, nothing helps except rest.

[gabs]

Thank you all for such inspiring comments they are what we all need. This condition is different for us all and for me I have found that I must pace myself from day to day (sometimes even hour to hour) which only time has allowed me to do but I now find I am managing to understand my body and act accordingly. I am very fortunate as I am retired and that means I am in a position to 'practice what I preach' unlike a lot of younger people with hectic family and business lives. Thanks again. Gabs..

[Siobbhan]

I too have had lupus for 30 years plus. I have some really bad flares but battle on without cotisone or plaquenil. I find that antibiotics are really fatal for me and try to avoid them at all costs . I am so glad you posted your story. I think that with determination and all the right things we can at least manage this terrible illness. Diet is key for me.

Kathryn

[Rani23]

Reading all the comments here and what everyone has gone through shocks. I think everyone here who are suffering with this nasty illness know what it, it's like living with it day to day and there are no help available. To know that someone who has had back problem is working full time and getting DLA plus having a personal assistant to come and help her with cooking and cleaning. The government pay for that too. It makes me sick.

[juneybells]

Well done for living a positive life, I to have had lupus for over 30 years. Luckily for me I have had good doctors and the rights meds with both of those I worked until a years ago. I am sure that a positive outlook really helps everyone cope better with this terrible condition. Thank you for telling us your storey

[Angelman1]

Thanks for all your encouragement. When I am struggling to get jobs and customers I sometimes envy those with a steady job....but mostly I love what I do and my partner and I have got used to not having a lot of money. I wasn't very happy before I was ill and was earning about four times what I earn. This is what I do.....nickjameskitemaker.com

[Joyalinc in reply to Angelman1]

I saw your website and think you are incredibly brilliant to change your circumstances and make a living doing something you obviously love. Very, very cook!!!

[Joyalinc in reply to Joyalinc]

COOL, not cook! Haha