Whilst blog activity has been minimal and absence notable, it's a far cry from my daily, non-cyber related life.
So this month has been eventful to say the least, not including all the additional calories burnt hopping like a mad hare from one side of the road to the other to find the smallest glimpse of shade to walk in. I've also been making sure I remain permanently glow in the dark by applying industrial strength and ridiculously expensive factor 50 sun cream to my entire body everyday (the price we have to pay to stay the colour of a milk bottle) or as my 84 year old Grandad summed up last week in his concerned voice "ooooh, you're very pale aren't you".
My medication has changed too, the remnants of my final Myfortic prescription has been very excitedly shoved right to the back of my overflowing medication box and a box Azathioprine sat pride of place in what is vastly becoming a home pharmacy. The downside, my poor veins hammered in weekly blood tests to check I'm tolerating it and my kidneys aren't going haywire again. More adventures on this coming shortly.
But yes, unless you've been in an underground cave without wifi or any form of daylight these past few weeks, you can't have failed to notice the almost Mediterranean type weather conditions we've been experiencing. In true british style we've been stripping down to our skimpiest and occasionally most unflattering attire at the first hint of the mercury hitting 70°, chalky skin blotched red in sore looking patches and floral maxi dress patterns adorn our streets as everyone makes the most of the limited sun in this country.. But whilst most of us are enjoying our strapless tops and merry camaraderie in packed beer gardens, there are a limited number of us that find this heat very difficult to manage.
The sun is a massive trigger for lupus flares (disease activity and symptoms increase making us unwell) our bodies reacting to UV rays encouraging our nasty rashes to appear if we spend too much time in it. So unfortunately topless sunbathing is totally out of the question. Secondly a lot of us are on medications that rapidly increase our sun sensitivities. Drugs like hydroxychloroquine enhance your skins reaction to the sun making you burn easily and immunosuppressant drugs like Mycophenolate increase your risk of skin cancers.
Whereas prolonged heat can make the healthy of us feel drained, it definitely exacerbates the fatigue we suffer from other medications or and our general condition.
With me, I'd say I tolerate it well, the heat drains me and I can't sit in the sun very long. I wear SPF 50 to walk to the shop and try and stay out of the midday heat. I occasionally get my rash on my arm if I get caught out and my face stings like I've used cheap cleansing toner on my face. I also have a lot of moles on my back and body, more than 50 (I've not counted, just a good guess) which puts me at extra risk.
Staying safe in the sun has now become a profession, it goes hand in hand with my low salt diet for my kidneys, my early nights to battle fatigue and the two weetabix and banana I have for breakfast in order to stomach my medication. There has been so many adjustments to my life these past couple of years that makes hiding away from the hot sunshine and looking like a vampire, is a small sacrifice to pay to stay healthy. For me it's all about winning and if by self preservation, the more I can do to make sure lupus doesn't raise his mean little head, the more I feel like I'm in charge.
You have to, as always see the funny side of things, like my 'shady route map.' It sounds like a dodgy log of all the backstreets of York you need to avoid, but it is actually a mental map of the various routes I can walk too and from work, accounting for different times of day, what side of the road is the most covered from sunlight at that point and where to cross over to the next shady spot and limit exposure. It certainly makes you less self conscious, I very rarely care about looking like a complete tool in my mission to stay safe in the sun, whether it's hanging back in the crowd of pedestrians letting them pass so I can stay in the shade or happily going out in the biggest, floppiest sun hat I can find.. Next year if it's this hot again, I'm thinking parasol. Surely I won't look too out of place in a city like York?
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