Tag Archives: sunshine

178/365 – Being silly in the sun 

Today I have been rather silly during the start of this heatwave. Travelling to Birmingham for work, the room we were booked in for the day was extremely hot and stuffy as the temperature soared past 20. After lunch, we decided to take our meeting outside and sat out in the sunshine for the afternoon section of our discussions.

As I wrote about in post 68, taking aziathioprine increases your chances of getting skin cancer. Therefore, it is essential to cover up skin, with either clothes or factor 50, when the sun is high. In my rush to catch my train this morning, I forgot to pack suncream and spent far too long catching rays unprotected. 

This is another example of things I’m jealous of – people who can enjoy being out in the sun without worrying. While everyone should use suncream, it is less dangerous for some people not to.

Thankfully, I’ve learned my lesson from today – I think I’ll have a few nasty sunburn marks tonight.  For the rest of this heat wave week, I will be careful to carry my sun block and a light long sleeve shirt wherever I go. 

143/365 – Chasing the sun (sensibly)

After a day of shivering in Biarritz, where the temperature was significantly lower than London and the sun was a fleeting visitor, it was decision time. Did we stay for another two days and feel time drag waiting for our friends to arrive? Or did we take a proactive step – leave our 4 star hotel with its jacuzzi bath and bathrobes for less fancy but with more sunshine? As we shivered over a coffee, our phones were put into overdrive looking for somewhere warm that wasn’t too far away. The closest place we could see that had a significant  temperature difference was Zaragoza – a place I knew absolutely nothing about but was only three hours drive. There was obviously an extra expense to consider, but Biarritz was expensive and Spain was not. After thinking about it for a couple of hours, we hired a car, book an £18 a night hotel and planned to set off the next morning.

Before we were on the road, there were a few faffs that delayed us from starting. But when we met a lovely Irish girl, who had just walked the section of the Camino we were about to, we knew we had made the right decision. She talked about the freezing cold that she couldn’t shake in the Pyrenees and about huddling around a fire a man had made on the mountain. Soaking up some sunshine before that inevitable bone-seeping cold seemed imperative. 

Watching the landscape change on the drive was incredible. From picturesque Basque coastal towns, we then spent an hour and a half powering through the Pyrenees. Their scale and the plummet in temperature up there became very real. Once we were through them, the land became flat and fertile before it changed to a more arid quality. The dust, the wind and the rows of high flats were my first impression of Zaragoza. Below is a railway bridge near the edge of the Pyrenees – you’ll see the change in sky here to Zaragoza below.

Once settled in our more modest hotel, which I’m pretty sure had a brothel attached, it was a quick change and out to make the most of our 24 hours in this sunny city. We found our way to La Aljaferia (a palace dating back to Moorish times and is the finest example of that kind of architecture outside of Andalucia) – well only as far as the park outside it but it was a fine view for sunbathing and reading.  

I had my factor 50 sunscreen with me, as mentioned previously in this blog, my immunosuppressants increase the risk of skin cancer so I must always be careful. 

You would think that that risk would put me off being in the sun, or at least enjoying it less, but it has not. I’m still aware of how much better I feel after soaking up some Vitamin D – I’m just a lot more careful now about not overdoing it and making sure I’m covered up.

Lying in the grass with bare feet and ants exploring our legs, Elaine and I looked at each other and smiled. We had made the right decision and we would start the Camino better for it.


102/365 – Sunglasses and ocular symptoms of myasthenia gravis

Many people will be doing salutations to the sun god after the recent burst of warm weather – not to mention the three month heat wave we’ve been promised. In amongst those worshipping, you may well find people with ocular myasthenia gravis. The sun means they get to blend in with everybody else. As when the sun’s out, sunglasses take over.

Sunglasses are your best friend if you suffer the ocular symptoms of MG.  They become the way to disguise your MG – to hide that part of yourself from the world. They give you privacy and an anonymity you often crave – people don’t ask what’s wrong with you nor do they stare rudely when you’re behind shades. Ok, some people do but you know it’s not because they think you’re different. They just think you’re looking hot. That’s right – with sunglasses on you get your attitude back and you know you’re looking hot. 

The only downside is there is more socialising when the sun’s out which can often lead to late nights. As I mentioned previously, there have been nights where my glasses have been politely asked to leave. No matter how many times I try, it’s scientifically proven that it’s impossible to wear sunglasses once the sun has gone down without looking like a tool. The spell is broken – you become self conscious again and long for the next day when the world will be experienced through tinted glass once more.

I’ve said it before and I’ll say it again – this year I’m going to stop beating myself for ‘being vain‘. As I’ve already established this so-called vanity is actually a grieving process. Part of this kindness I’m offering myself is to accept that giving my heavy eyelids a break behind the sunglasses is ok. In fact it’s probably quite good for them considering the strain they face trying to force themselves up when the MG wants it otherwise.

But I will not use them to hide anymore and I will not wish away my summer nights. Instead I will embrace the fluctuation and be grateful on those nights where I can fling the glasses to the bottom of my handbag without a care. Those other nights where it’s more difficult to put them away will come and they will go. When they are gone, it won’t be memories of sunglasses that fill me up but memories of being alive.

91/365 –  Spring day in Dublin

For our last day before heading back to London the sun came out and declared spring’s arrival. Every one of the 17 degrees was welcomed by my sun-starved skin as we made the most of the clear blue sky. 

After a couple of late boozy nights in Dublin’s finest establishments, being out in the fresh air for a long walk was what my body was craving. Wandering around Glesnevin Cemetery, where over a million Dubliners are buried, was quite exhausting in the warm spring sun so we made our way next door to the Botanic Gardens. Many of the locals also decided to make the most of the day as families played around the flowering cherry blossom trees and glass houses. Elaine and I found a quiet spot and for the first time this year lay in the grass to relax in the warmth.   

The sun felt strong enough to burn the skin, or at least bring out a few freckles. I had no sun cream with me and initially forgot about the skin cancer risks with aziathioprine. However, after a little while soaking up the Vitamin D, I remembered and reluctantly covered myself up for the first of many times to come.

Feeling still after the break, my mind feels ready for the week ahead and my body is ready to be back on the exercise regime starting tomorrow. My eye is a little droopy after a couple of late nights but hopefully with an early night or two it’ll be back to normal.