Accepting a changing story

I have moved from getting by and surviving with lupus, to getting on and thriving - looking back I find out why ...

You may have noticed that so far I have not written much on this blog about my own particular lupus ‘story’.  The reason I raise it is because I have been asked by others who are helping me with Living Well with Lupus, why this is. They reckon that it would be a good idea to include my story because it would firmly show Living Well with Lupus is rooted in personal and real human life, which is very much the intention. Having thought about it, I agree and I do intend to post something at the beginning of next year with the aim of launching a ‘Loopy Stories’ section on this blog where different ‘loopies’ will share their stories, thoughts and tips but this got me thinking, ‘why  hadn’t I done it spontaneously?’ and the answer was illuminating ...

The first and most obvious reason is that I am really conscious that I would never want the whole Living Well with Lupus thing to be about me as a kind of Daisy Seale-Barnes, ‘me-me-me’ ego showcase’. I want it to be for and about all ‘loopies’, their supporters and most especially for the ‘loopies’ who directly helped us with our research, who also inadvertently helped me personally by being so inspiring at a time I felt I was living on a petrifying lupus rollercoaster. They showed me I was not the only one to be going through this and I was not the only one looking for answers.

The next reason is a little more complicated to explain, but when I thought about it I realised how important it was because in this explanation I was able to identify the key to what turned the situation around for me and made me able to cope much better and live more happily with lupus than I had ever been able to before.

The fact is I already wrote my ‘story’ in February 2007 for St Thomas’ Lupus Trust website (you can find it at http://www.lupus.org.uk/patients/daisy.htm) and for some reason I kind of felt ‘bound’ to it which made me reluctant. This was because whilst the events of the story remain fact (although they have developed somewhat since then) I no longer feel comfortable with the underlying attitude that comes through. I didn’t want to use that version of ‘Daisy’s Story’, because I no longer see it as an accurate reflection of how I feel today.  The ‘me’ that wrote that story then, is not  the ‘me’ of now and the attitude of the old ‘younger me’ doesn’t reflect the message I want Living Well with Lupus to promote and I suppose my new more enlightened self feels a mixture of embarrassment and pity for the me of that time. I was in a far worse place than I realised.

In fact having just read it again, I realise that there is just one sentence that particularly jars. It is when I say that “I will keep fighting back, brushing [lupus] aside whenever possible” but I also shy away from some of the other ‘defiant’ language of battle I used, such as when I talk about “winning” as if there were some kind of ‘competition’ between me and lupus.

I must confess in the early days after my diagnosis, before my symptoms became so grave and long before I wrote ‘Daisy’s Story’ in February 2007, I was under the impression that my strong will and stubborn nature would mean lupus would never become a major problem for me. Although I made a few token life ‘tweaks’ to address it, I resolved to carry on as per normal, but I firmly held on to what I now realise was a slightly arrogant and very naive mindset. If I am honest, I thought lupus only ‘got to’ those with a weak will and was relished by ‘moaners’ as it gave them fodder and focus for their negativity. Thankfully by the time I wrote my story I had been humbled from this conceited attitude and had moved on a long way, but I still had a way to go.

With the passage of time and events that have occurred since then I have learnt much more and am now living a lot easier as a result. What has changed is that I finally learnt that it is futile to try and ‘beat’ lupus by denying, rejecting and battling with it because, like it or not, it is in my life.  I  learned the hard way. After every flare-up I'd try  to carry on as if nothing had happened, as if lupus  didn’t exist until eventually I realised that this approach only ‘enrages’ the lupus until eventually it flares-up in anger - sometimes sooner, sometimes later.Since this finally sunk in things have been much better.

In my favourite little book Don’t Sweat the Small Stuff, Richard Carson suggests that we open ourselves to “’what is’ instead of insisting that life be a certain way”, and that by “surrendering to the truth” we gain a deeper perspective and enjoy greater peace of mind. I think it was in this vein, that by accepting that ‘it is the way it is’ when it comes to my lupus, that these days I get on far better.

Nowadays I adopt a softer more malleable attitude and live around it.  The way I see it: rigid things break and smash into lots of pieces, soft things mould and stay in one piece. With lupus it is necessary to be flexible and to develop patience in abundance!

It is very important to say that this does not mean I allow it to stop me doing what I want to do, or make  a bigger deal of it than it needs to be; quite the contrary. Funnily enough Tony and I were talking about this the other night, how after the events of the last few years in many ways we are now living life in a far more desirable and enjoyable way than we did before! Because we have to give so much more thought to what is important to us individually and as a couple, we have really established priorities. Once priorities have been identified  it is possible to move forward. In our research we described the steps as »Stop »Think »Plan. Admittedly, certain trade-offs and compromises have to be made, but the truth is  I now do more of the things I want to do, spend more time with people I want to spend time with, eat the way I want to eat, work in a way I like to work than I ever did before, and I am much better at saying ‘no’, because I am clear about my boundaries.

It seems we have developed a new appreciation of life and have become acutely aware of how valuable every healthy moment is. Obviously priorities change and plans shift accordingly. When  lupus does decide to make an appearance, we accept it and deal with it in a calm and pragmatic way. Perhaps unsurprisingly the lupus seems to have mellowed too. By recent standards, my health has been much better.

All in all, I am looking forward to retelling my story in January, because now that I have accepted that lupus is one aspect of my life it has become a happier and more fulfilling story to tell.