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Lupus Management

In this topic we were interested in exploring the ways in which people managed their illness.

People wrote about self-help strategies, complementary and alternative medicine, faith and spirituality etc. Daily management strategies appear to define the experience of lupus and we were keen to gain insight into how people developed these.

Phoebe

...My work try and manage me but not in a good way...

Isabel

...Acceptance means that I don't fight it...

Lis

...I had to stop working full time in 2003...

Denise

...the most unbearable part of this disease for me is chronic fatigue...

Ros

...I have no coping strategies...

Heidi

...I was finally diagnosed with SLE following over 2 years of wrong diagnosis...

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Amelia

...I tried the online boards, but found them too depressing and it made me feel sort of guilty...

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Fatima

...get to know your body and listen to it...

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Phoebe's Story

Thought I would talk about management of lupus. I don't really manage my disease, it manages me. It manages my social life, my work pattern, my family life, housework and even my heating bills! Shame I'm not a famous person - it would be a cheap manager! I'm not yet at the stage where I have learnt to be sensible. I still get frustrated at the slightest thing stopping me from doing something. I'm still reduced to tears when I realise that the carpet needs hoovering but my fatigue and pain stops me - honestly, it's just a tiny hoover what is wrong with me. I am inconsolable when I realise that a night around a friends catching up on gossip over a coffee is going to have be called off one hour before I'm due round there because I feel physically ill. Sensibility - that's what I need to manage my illness and what I'm not using at the moment. I push myself at work, partially because work are pushing me too and partially because I know if I don't keep up I'll be forced to go. I run around like a mad thing doing my job, organising stuff etc and then all of a sudden I will literally collapse and will need to take a day off. Then HR moan about my sick leave, so I go back and the cycle starts again. My work try and manage me but not in a good way, they try to manage my lupus but again not in a good way. My friends way of management is to be initially sympathetic. Then it wears off, and they peel away when I can't go out with them or cancel last minute. They seem to think lupus will go away. So I become isolated in my illness.

Isabel's Story

I manage my SLE, Hughes and osteoporosis with medication, vitamins to counteract the meds and acceptance. If I had the money I would definitely have all forms of alternative therapy that helps to relax the body and mind. TENS is good for pain/ache as it's a different type of pain - it's like self harmers hurt themselves to relieve the pain within, I use TENS in the same way. Acceptance means that I don't fight it and allow myself to rest if I have to. I am 46 with 2 children aged 5 and 8, diagnosed for 4 years.

Lis's Story

I'm 31, with a 2 year old son, and have been diagnosed with SLE since 2002. I also have Hughes syndrome, fibromyalgia and Sjogren’s syndrome. Similar to other comments, my Lupus tends to manage me, although I have been more careful over the last few years.
I had to stop working full time in 2003, and although money is tight, I can manage part time work. I don't arrange nights out too close together. I too get very frustrated that I cannot do "normal" things. The biggest challenge has been becoming a Mum. I am constantly exhausted, and managing Lupus has had to change, because I cannot just go for a week’s bedrest when I need to. I would not be without him though.

I moved house 3 weeks ago, and when we last moved I had a huge flare. This time I knew I couldn't afford to do that, so I started packing 4 weeks before the move day, doing 2 boxes a day, knowing that would help lots and it did!!!!

My best advice is to swallow pride and ask for help! My parents are wonderful, and so are my friends, they understand that even a spare hour makes a huge difference.

Denise's Story

I’m 42 and diagnosed with Lupus 2 years ago. I think the most unbearable part of this disease for me is chronic fatigue. That is what determines how my day will pan out.

I work part time at a primary school and usually manage my 5 hours a day ok but sometimes when the fatigue kicks in I can be reduced to tears on the journey home and have to go to bed and sleep!! Obviously I have days of pain and unusual swellings, but on the whole, I think it’s hard for colleagues, friends and family to understand because on the outside you can look so well. My children are grown up and I can rest when I need to but as others have said, the unpredictability of the disease causes disruption to your daily life.

Ros's Story

I am nineteen years old, and have only very recently been diagnosed with lupus.
I have no coping strategies and like others I am managed by my lupus and often feel like a ninety year old woman stuck in a nineteen year old body!

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Heidi's Story

I am 39 and was finally diagnosed with SLE in August 2007 following over 2 years of wrong diagnosis.
For me a diagnosis and having a second chance to live gave life a new meaning and understanding.
Before diagnosis my life with Lupus was ruled by the onset of this fast acting and intrusive disease. This lead to despair, depression, lack of mobility, severe pain in all joints, muscles and tendons, and in the end, multiple organ failure and time spent in ICU battling for my life.

Three years on my life has taken a different turn. I now accept this illness for what it is, welcome the wonderful things it has given me in way of a second chance to make a difference, and the time to show my family how much they mean to me.

Back working full time since December 2007 as a Drug Worker, stress has been one of the hardest things to manage. Stress is my main trigger, but recognising that and finding ways to deal with it, along with having a positive mental attitude, has been my biggest help in managing this illness.
I have given my self new challenges to overcome in helping this further. I am currently studying Reiki 1 for self healing, am looking to study holistic therapies next year on weekends in order to look for a career change, and hope to study NLP, in specific - managing a critical illness.
This year for me has been about taking back control of my life from Lupus.

Now managed on medication of Immune Suppressants with regular blood tests and monitoring from specialists, am hoping that now off prednisolone can manage this illness without the need for them on a permanent basis.

My advice, rest when needed, accept the illness and look at the positives it has brought you and focus on those, get your fighting spirit back and look to take control, but most importantly be sensible and don't take too many chances or risks with over doing it, by drinking too much or by burning the candle at both ends. One of my main inspirations that might help was watching "The Living Matrix".

I have always been a stubborn little so and so and have always had that inner fight and determination in me. I think my dance career helped that, as in order to succeed I had to fight and perform well even if injured or ill. My attitude has always been - If you want something then you have to work for it. I have never been one of those lucky ones that has things handed to them on a plate, but then don't really think I would want it if I didn't have to earn it.

There was a time however, when the illness took its worst turn, when pain was difficult to manage and meant that I could not care for myself. Even washing had to be done for me which I felt was humiliating. I also felt that my family were better off without me and that they should not have to suffer with me. At that time my fighting spirit and positive attitude left me and I gave up. Much to say, my body then gave up two days later and my organs failed.

That taught me that to not fight was something I could no longer afford to do. To not be positive would mean me be miserable and ill plus would also mean that I had not learnt anything that this illness had tried to teach me.

I do think anyone can develop a positive mental attitude with practice. I am not saying that I don't have my down days or moments when I feel sorry for myself, as I do although now less frequent than before. I am currently doing some research in to the way the mind works and the bodies natural energy force.

I do feel however that to tell yourself a positive action for the day to help you through it can really help with being more positive for the future. "I can" and "I will" are things I use all the time.
It is very easy to think your life is over and "what is the point I will probably die soon anyway". By taking one day at a time and my looking in the mirror each morning and being thankful to have that day at all, really gives you the strength and encouragement to get through anything life has to throw at you. You master that and you can master anything.

I firmly believe (call me crazy if you like) that you become what you feel and think. If you think something bad will happen to you and you think it often enough and fear it, the chances are something bad will happen. If you think positive things then positive things will happen.

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Amelia's Story

I'm at that annoying stage where I'm still stubborn enough to try to push through the pain even though I know it'll make me worse. I guess I'm still trying to come up with a good management strategy considering what's happened over the last couple of weeks. I thought I had one sorted and then I get a cold and I'm back in bed because I refused to give in and let it stop me from doing normal things. I felt awful and I still went to the gym, which was stupid.

Apart from that stupidity, I have to have a daily routine otherwise I will get worse. It does get a bit monotonous but it is for the best. I've worked out when's best to have a shower, do some reading, get caught up with friends, have a rest and go for a walk, and I have to stick to this. I'm still trying to work out how to adapt when something in that routine goes off and I am desperately trying to work out how I can be spontaneous and do something completely unexpected. I do set myself a task every day and I aim to do it, even if it is only having a shower before going back to bed.

The coping strategies on the social level seem to be what everyone else is describing. I've lost friends because of my lupus. Some of those losses were needed, some of them were simply because people drift apart and some of them were through complete ignorance of what I'm going through. There's one in particular who told me she didn't know what I was complaining about, it's only lupus and if I had ovarian cysts like her then I really would have something to complain about. But the friends I've still got have been incredibly supportive, the only thing is that they have lives of their own to live so they can't come and see me as often as they'd like.

When I was diagnosed with fibro I tried the online boards, but found them too depressing and it made me feel sort of guilty. I was responding really well to amitriptyline and no one else was, I was able to have a bit of a life and they didn't. I very quickly gave up the online thing until just before my SLE diagnosis when I found Sara Gorman's blog, Despite Lupus.

It was the first positive thing I'd read about lupus and here she was discussing similar emotions to what I was having. Fantastic. I recently discovered But You Don't Look Sick? through a friend who sent me a copy of the Spoon Theory, but I haven't signed up to the boards, although they do seem to be positive and that's what I need.

I haven't tried any face to face support groups yet. I've heard there's some in NI but they don't seem to be anywhere near me.

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Fatima's Story

I do believe that positive thinking and energy helps me manage my lupus. I had a very bad period after I was diagnosed initially when I stopped going to the gym, I felt depressed, I was feeling guilty because my husband was doing most of the housework and the cooking at home. I did not want to see my friends and I was very tired and worried that I may lose my job. I was a trainee solicitor at the time and I was very ambitious and hard working, doing the extra hours.

It took me months to get used to the idea that I was ill, and it was very depressing.

I have now realised that the first and most important step is to acknowledge your illness. Then you have to find a way to live with it and be happy.

I found that the countryside makes me feel really good. I live and work in London where the commute and stress are the worst. I have slowed down, I am trying to control my stress levels at work and I have now qualified as a solicitor.

I now take long walks when I can and I rest more. I have recently signed up to go to the gym again, and I will take it easy.I was on prednisolone initially for 8 months, now I am on cellcept. I do not want to have to take steroids ever again.

My advice is be positive, get to know your body and listen to it, and when you are tired rest. When you have energy, walk or swim, enjoy life as it is because it may be difficult and it may hurt but I am determined to make the most of it!

University of Hull | School of Social Sciences | Transitions to Illness