Living Well with Lupus: Happy Days

It’s been a while, so I thought it was about time I put ‘finger to keyboard’ (a modern twist on ‘pen to paper’). So, what’s been keeping me?

Well it’s been a case of ‘no news is good news’. For the past few months I have been enjoying life in a way that for a long time I thought would never be possible again and so far, I’ve avoided having to pay too higher price health-wise. I’ve been on a fantastic holiday to Italy, progressing with my Yoga Foundation 1 course (that I’ll finish with final retreat in July), thoroughly enjoying Ben and Rachel’s wedding, coordinating building work on our house, keeping up with my voluntary support work and spending great time with Tony. So what’s happened? How has this been possible?

I have talked of lifestyle changes before, but I know it’s not often possible to change everything overnight. I started making small changes long ago when I realised that lupus couldn’t be a) ignored, b) fought or c) ‘willed’ away. With each thing I tried I hoped it would be the key to returning to a healthy life. Individually each thing helped, but I’d still hit upon significant stumbling blocks. And realistically I probably still will because it’s very easy to fall back into a ‘phew, I’m over that now’ mentality as soon as I feel vaguely better, although I know in my heart of hearts (as we all do) that currently lupus cannot be cured, it is always there. But, with proper management it can be contained.

This is the reason for the recent spate of relative good health (ok not perfect but pretty damn good) and consequential happiness I have been enjoying. At the beginning of this year I made a pact with my husband to consciously adhere to all the winning lupus lifestyle lessons we have learnt over the past few years. The incentive is high. We would really like to start a family and the doctors have been working to adapt my medications to make this feasible. Meanwhile it is my job to do all I can to ‘tame’ the lupus, as going into pregnancy mid-flare isn’t likely to make for a happy story (and let’s be honest, when lupus is flaring even the conception part itself doesn’t hold much appeal!). So I’ve been acting on all the things that I know, rather than just knowing them, if you see what I mean. And it seems to have been working.

For example, I have been taking sun protection very seriously this year (unlike in the past where efforts have been half-hearted and underpinned by the desire for a nice tan and the mindset ‘I’m sure it doesn’t affect my lupus that much’) and low and behold, I have avoided the usual downer that follows a holiday. Notably I still had one of my most enjoyable holidays ever and came back looking really healthy. There is a separate blog on this subject to follow as I’ve discovered new products and tips.

Due to the economic recession my work was drying up so I decided to turn this into an opportunity to make more time for my health and reduce stress. I would now describe myself as ‘semi-retired’ – at least for the time being anyway. I do some low stress work for my husband’s business and occasional odds and sods for former colleagues, but nothing that puts me under any great pressure.

I’ve been getting rest and sleep where necessary even during the day; what’s more this is without guilt (a new one for me). I’ve also been keeping up with my yoga and trying to walk regularly for gentle exercise as well as to sticking to prescribed medical routine, blood tests and appointments.

Ok, I’m not pretending I’ve been the perfect angel 100% of the time, but having a strong incentive has made sticking on the lupus ‘straight and narrow’ far easier.

To summarise the key factors that have been key to my good stretch, in case you fancy making a few changes that are likely to help: