Is lupus something we need to 'beat'?

Someone here recently wrote about a method they had found to beating lupus. It got me thinking not just because the post 'inflamed' (sorry naughty pun) a variety of reactions, but also because like it or lump it for most of us lupus is here to stay and there probably never will be a quick-fix or a magic-wand that'll make it disappear.

To those that have the motivation and will-power to change their lifestyle as a way of coming to terms with their disease; well-done. It's not an easy thing to do (I'm thinking cake, buttery toast, and bacon sandwiches) and you should feel immensely proud of yourselves. But also perhaps have the humility to accept that not everyone is at the point where they have the resources to I suppose martyr themselves to their condition. Eating well, and riding the body and home of artificial chemicals is as much a political as a health act. And this site I believe needs to be a safe place for us to discuss our dis-ease without getting too much into politics

That being said, I do know in terms of myself that I try and placate a lot of my lupus symptoms (and hopefully disease progression) through a decent diet with a moderate degree of success. However when I'm having a 'lupus' day/week//month this is far from easy. I barely have the energy to boil myself an egg- let alone deal with the seemingly monumental task (inc all the washing-up, that's the worst, the damn washing-up and mess that comes with cooking) that goes with eating well. And of course I'm not always perfect in what I do. Sometimes I just fancy a fat fry-up, followed by a chocolate bar end of. Diet plays a part, but the story of lupus is much more complex than just that.

The fear that one day I may be caught 'off-guard' and my friend lupus will decide that it fancy's a piece of my kidneys, or my lungs, or my heart is always lingering there. I'm trying to come to terms with that, and not let my mind-scape mirror the battleground of my body. This isn't always perfectly straight-forward, but I think coming to the idea that lupus isn't something I need too or even should "beat", is the only path I can go down. When my body is already minefield of renegade antibodies, using such a language of war when referring to myself and 'it' isn't particularly helpful.

A Buddhist nun once wrote of the irony of witnessing peace activists during demonstrations argueing- at times even clobbering their opponents with their rainbow banners- for peace. I think for many us this anecdote can aptly extend to the way we view see ourselves and our lupus. Any lupus beating we do in a way perpetuates the nature of the disease. On some level words such as 'fight' 'beat' and 'battle' assist us to re-enact psychologically what is happening to us physiologically.

More than radical diet changes, or even magic-cures- for us lupus-suffers the biggest challenge is that of the mind; when our bodies are a war-zone how do we stop our heads from following suit? How do we find peace with what and who we are? How do we transcend our lupus and our suffering and simply be at one with it all? And is this 'oneness' for want of a better word the destination our different lupus journeys ultimately ought to reach?

Acceptance doesn't have to be a passive thing. It isn't in any way that I bow-down subserviently to pain, fatigue, skin deformations, and organ problems. Neither does it need fancy trappings; money, special things or snake oils aren't at all necessary to find acceptance. It, I believe come from a simple moment when you crudly say to yourself this is who I am. And this I what I have to live with. OK. What next?

Sorry if this at all sounds preachy, I'm not trying to declare how anyone should be, or think , or act. I suppose in a way I'm just trying to philosophise on the common situation we find ourselves in. And to ponder what living with a long-term health condition really means.

So I ask, Is lupus something we need to beat?

(P.S. here's my lupus 'C.V' for any of those interested: aged one after months of being ill and bruising at a touch, I was diagnosed with idiopathic (immune) thromobocytopenia- my immune system was attacking my platelets- was put on corti-steroids for nearly 2 yrs. It passed. The rest of my childhood/adolescence was relatively uneventful- though I always had an acute awareness there wasn't something quite right in my body, I didn't really know how to articulate it. Fast-forward to 2 years ago; in the early summer I developed blazing red rash on my upper chest area, nose and cheeks (where my skin was exposed to sun) the niggling joints pain that had been around for years got more niggling, and some days I really struggled getting myself out of bed. As winter drew in the rash faded and i 'forgot' about it. Next summer the same happened again, this time I decided to listen and took myself to my GP. I was very fortunate, she is super-efficient and based on my history of immune problems and the fact that my maternal grandmother had lupus, she ordered a series of blood-tests and referred me to see a Dermatologist re the rash. Three months later I had a diagnosis; I had an ANA of 1:360, was ds-dna + and ro +, I started seeing a Rheumatologist who put me on 200mg Plaquenil and also began dealing with the aftermath of diagnosis... I'm lucky so far not to have any noticeable organ involvement, I still suffer badly with exhaustion though....)

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  • Very well written. Much food for thought. Thank you.

  • I agree with Purpletop.

  • Again, well written, the psychological effect of coming to terms with a chronic and long term illness may be the most difficult thing we have to face.

    Like Anjia for me the ever niggling threat of organ involvement is always in the back of my mind, and it's taken almost 3 years post diagnosis to 'come to terms' with the new me.

    Accepting this illness is now a part of me doesn't stop me hankering for the past fit, healthy and energetic me, but it does remind me how lucky I was to have many years of good health and being ill now brings home to me what is important ie.. family friends and love and support. Whilst I still continue to grieve occasionally for my lost career and academic achievements I now appreciate the smaller things in life and have learn't to take pleasure in baking a cake, a wee bit of gardening or a stroll in the countryside with my dog and partner (on a well day of course). These small achievements are now all important to me and in some way have enhanced my life and made me appreciate what I do have instead of racing along on a busy professional rat race where it is all too easy to forget and enjoy the simple pleasures in life.

    So, in some way having lupus has made me re-evaluate and appreciate what I do have!

    Slowmo

  • I could have written that myself Slowmo x

  • Totally agree. It is a journey to full acceptance, where we can actually say the words "I accept I have this" and then to live within its constraints. To me this is not 'giving in' but just simply trying to manage it. To try and ignore it and carry on as normal comes with a price. That said.....within these constraints I try to swim twice a week, and walk when I can (nothing like before). I try to eat healthy, still like to find funny things in life and be around those that I love.

    It is a journey that I would rather not have gone on.....but it has taught me a lot about life. Sometimes now when I watch others rushing around, working so hard and burning the candle at both ends, I often think ....be careful!

    I think your post is so wonderfully written. I think the emotional aspect of this illness is indeed the hardest. It's facing up to who you are now and what you have left behind. For me after the grieving process of acknowledging what I had lost came the acceptance. Now I work with lupus and we are a team.

    I hope this makes sense as I am suffering today with brain fog.....but I am just 'rolling' with it.

  • Very well written post!

    A few of my family members try to tell me that Lupus is a lot of 'mind over matter' I can get quite upset over this as it makes me feel that they dont really understand but when I think about it a lot of how I manage is in a way mind over matter just not in the way others think.

    On a good day I use mind over matter to get out of bed, get a shower, get dressed and drag myself to work.

    On a bad day or during a flare I dont stand a chance!!!

    From what I can gather this is similar to a lot of other people on here.

    A positive outlook and trying your hardest goes a long way but we all need to be aware and come to terms with the fact that this is an unpredictable and often cruel disease. I think most people have felt the emotional devestation of a flare after a period of being 'not too bad'

    x

  • Thank you all for your responses.

    A friend has recently told me I need to start writing about my lupus journey, and that if I chose my words well they may not only be of assistance to others, but also become part of my own personal healing. This is my first baby-step...

    Thanks again. x

  • I agree with the other posts, as I was reading I thought what a beautifully worded piece and how well you articulate the struggle I am having! I am still so angry at all I cannot now be or do, and guilty as others are worse off! I know I need to step away from my job, I could build a different life, but financially its difficult and I am (just) able to do it still. Acceptance of oneself is key to anyone's happiness, so thank you for your words x

  • Hi Anjia, ditto all the above and well done in putting your feelings down so articulately, I totally agree with you that acceptance is half the battle to coping with having lupus and learnt this early on. I too am a long term lupie and was often a "sickly child" we lived in a little village out in the sticks and had a very traditional village doctor who I was sure had been there forever but luckily left home to follow my vocation and work in the medical profession and found doctors who knew how to listen to people and hey presto I now lead a full an active life to it's fullest extent. Tho along the way I have tried lots of things - "natural living" that hospitalised me and now I listen to the wonderful doctors I have at St. Thomas and live each day to the fullest enjoying plenty of time with family and friends and my dear wonderful partner who copes so well with so much.

    Writing about your lupus journey sounds like a very good idea and could help many people, sufferers and medics alike, good luck if you go ahead with this. :-) You seem very articulate when it comes to putting your feelings down it could prove a very positive experience both to yourself and others

    Let your fellow lupies know what you decide

    Madmagz x

  • Lovely anjia, but I suppose I have a different perspective.

    I don't wish to upset anyone but I will never accept Lupus. I do pursue what I judge to be credible alternatives. It gives me some control over the disease and my own body. This is the best year I've had for a few years. It could of course just be the nature of the disease.

    I'm also the wrong side of sixty. I'll probably be too old to benefit if a cure is ever found. It is however my mobility that worries me the most. Even healthy people are less mobile after sixty, never mind if you also have Lupus.

  • I suppose the beauty of this site is for us to have a safe place to explore as many perspectives as possible; the good, the bad and sometime very ugly... ;)

    Our illnesses conjure a whole heap of different feelings, and each of us will have our own particularly unique way of going about them- as it should be.

    I'm so glad Melinda that this past year has been good for you, here's sincerely hoping it continues.

    x

  • Totally agree Anjia. After trying to fight it and not exactly winning I finally realised that I shouldn't be fighting something I can't win but accepting what I can't change and thinking about things I can do instead. But the thing that really made a difference was when I realised it wasn't a 'physical' action I needed to take, it was a change in perception. I started to realise that I hadn't really been 'cursed' with this condition - it just happened...and when I invested less energy in asking why this happened to me...'why am I tired'?...I had more energy for other things!....life was that little bit better! In fact, developing Lupus highlighted all the good things I already had, made me very adaptable...I'll be honest it's the best thing that ever happened to me in that way.

    That doesn't mean I don't have days when it's too much to bear or that I think it's wrong to express how we feel when we feel down or angry...allowing ourselves to explore these feelings seem to be a vital part of getting to a place of acceptance or finding some peace which this site supports so well.

    The points you make are very insightful and I hope this really helps you and others on your journey

    All the best

    xxx

  • Wow you're all amazing people and in principle I agree with all the things you say but sadly at the moment I am soooo resentful! My little boy is 7 and its "walk to school week" but I can't walk to school with him!!! I know it sounds so silly but I used to be so active, I was a personal trainer and so today I drove my son to school. I should be so happy that I have my gorgeous son (Brendan) and he'll get over not getting his stickers etc.. But I just read all your posts and feel so inadequate because you're all such strong people and I admire you. One day I hope to be like you. Take care xxx

  • Have a big hug Maraid. A really big one ;)

    And as difficult as it may be, try not to worry about being where you are in terms of your feelings towards your disease and the limitations it imposes.

    Much Love,

    xxxxx

  • You are in no way inadequate Maraid!

    Also, I didn't reach my conclusion above because I'm strong (well no more than anyone else that's for sure lol!)...it's just after banging my head against the brick wall that was across my path - because I wanted to go the path I was used to taking....I realised I could step round it and take a slightly different route!....I changed because I had to...banging my head for that long gave me a headache! :)

    BUT, your journey is your journey. It took me quite a while to get to a point where I could see things this way. Please don't think your journey or experience should be compared with others and that your inadequate in any way. Yor experience and your pain is valid and you are on your own journey and all your suffering is real.

    What you've experienced today is horrible and you have every right to feel resentful.

    If your wondering how we have managed to be strong, remember it's not strength. It's probably more necessesity! As hard as it is, you may find that evetually you will become so exhausted with the heartache remembering the things you used to do (I used to be captain of a ladies rugby team:( ) that you decide that all you can do is concentrate purely on the littles things you can do...and that relief in itself might bring the peace that we all seem to seek.

    I felt like I was reborn in a way but of course I've come out this side weaker?!...sounds like a negative when I describe myself that way but I suppose I see it like this -

    Before I thought about my 'previous life' a lot...thinking things like 'I used to be fit and healthy, I'm weaker now'

    Now I don't see myself as a comparison to my former self. I see myself as a person separate from before, a person who has Lupus and has different strengths and weaknesses (some from before) and that all aspects of my new self are important. It's only since thinking like this that my life became easier, I think deep down I felt guilty that I couldn't do the same things...and I was punishing myself for it, I blamed myself.

    I'm different now...and that's ok

    I allow myself to see myself as a different person now so I don't have to measure

    myself against my former self....If I did, I would fail every time...and I don't want to see myself as a failure any more.

    I'm a different person, but I'm still a worthy, capable, important human being...I'm just a bit different from before...different though, not lesser or inferior...just different

    Sorry for my long drawn out explanation!

    I think what I'm trying to say is that when we compare ourselves to our former selves we will fail every time. You have changed, but you are just as worthy and special as you were before.....just in a different way.

    I hope you will find the peace that will bring the joy and contentment back into your life that you clearly deserve.

    Much love

    xxx

  • Dear Anjia and to all the other comments that followed Anjia's post.

    Thank you for the words of encouragement and for sharing your stories.

    All I can say is...When I am having a bad day, I try to remind myself of the Serenity prayer...

    God grant me the serenity, to accept the things I cannot change, Courage to change the things I can change, and the Wisdom to know the difference....

    Take one day at time and take care.

  • Many thanks Anjia & Charz001. Best wishes to you both xx

  • Thank you Anjia, for putting into words what I've been thinking ; but you have expressed it far better than I could. Please keep writing! Thank you everyone else who commented for your thoughtful and supportive replies. We are such a powerful community; one person sharing their thoughts can turn an ordinary day into a very special one.

  • Many thanks Steadilymovingforwards, you are very kind and your kindness is very much appreciated at the moment!!!!! I don't know how to get to where you & the others are (emotionally & mentally) but I DO know that's where I need to go!! Big hugs to all x

  • Hugs to you too! I was thinking about it in the car going home today. I think it probably happened whilst i was studying...usually quite a good student but had to make do with a lesser mark...that lesser mark still took me six years and I really wanted to be proud instead of my usual disappointed...when I used to think of myself with lupus it was the 'old me' cursed with weakness. Since the getting my results i suppose I see myself as a lupus sufferer now..not in a negative way necessarily but I means now that I don't expect too much from myself, so what I do manage to achieve I can pat myself on the back for! ;)

    You will get there for sure...it's a pretty exhausting journey but I reckon you'll relish the challenge! Have every faith in you

    Take care xxx :)

  • Well said everyone!

  • I am new to this site, and new to my diagnosis of SLE (only gaining my lupus badge last Thursday!) although my symptoms have been fairly longstanding and unrelenting. I think this post is brilliant - I have come to accept it, just another label and have made my peace with the effect it has on my life and how adapting to respect lupus is more successful for me than fighting it.

    Stay fabulous everyone. Xx

  • Agree with others who have said how beautifully you write. After many years I still bouce between acceptance, denial, battling and frustration xx

  • So true xx

  • Hi Maraid,

    just wanted to say that in my school 'walk to school' includes those who park away from the school and walk the last bit as 'walking' We have to as some families live a long way away. So you could ask his teacher about this, and the 'bit' you walk is up to you! Have you told the teacher about your limitations? it can really help teachers to know, as if you are feeling extra ill, it may affect his behaviour or response to events in school. I am sure his teacher would not want him to feel left out. We would want to make it possible for all children to join in as much as circumstances allow,

    Good Luck with it all! x

  • Thank you Steadilymovingforwards and Saranne, just come back from the Drs and I'm having a flare, which I new anyway! Yes I should tell the teacher but at the moment I'm so tearful that as soon as I start to explain I burst into tears!! So just can't face it but I will soon... Really appreciate your thoughts, thank you xxx

  • Sorry *knew!!!!

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