A very English Heatwave

I wrote this at the end of last week, and then completely forgot to upload it! I blame the sleep deprivation!! 

We have just experienced a week or so of exceptionally high temperatures here in my part of the world.

When the daily average is in the upper 20’s degrees Celsius. And it doesn’t cool down at night.

It affects everyone and everything, I understand that. Having ME just makes life somewhat more difficult. 

One of the unfathomable aspects of how ME affects me (and many others) is my ability to regulate my own temperature.

I always used to be a “cold” person, Andy would hate it if I warmed my cold feet on him, and patients would ask me to warm my hands up after experiencing my chilly mitts on them when giving a bedpan!!

So to have the table turned has taken some coping with. Obviously being a woman of a certain age didn’t help, but when HRT helped the flushes but NOT this awful feeling of being so overheated I had to take my ME into account. And it turns out to be one of the myriad of unexplained symptoms. Great!!

So when a heatwave hits I have to really think carefully about my day, how I pace myself and take extra steps to ensure that I can stay cool and hydrated.

We don’t have air conditioning, but the car does so that can be helpful.

There are fans all over the house, strategically positioned for maximum comfort wherever I happen to be. Including 2 in the bedroom which you may think is excessive but it’s also about having a quiet appliance that can stay on all night and not disturb my already disturbed sleep.

The flasks that keep drinks cold are amazing, and 2 years ago when I had my knee replacement in the middle of one such heatwave, icing my knee was fantastic!

As I have said before, pacing is about energy management, so in very hot weather the body is working harder to maintain a normal temperature and dispel the heat. Normal people feel more tired in hot weather, so add to that ME and very limited energy supply and recovery, it soon becomes apparent that other activities have to be curtailed in order to use the precious limited energy on what’s important.

Then gradually as the weather cools down again to a normal British Summer, a more normal baseline of activity can be resumed.

So, what happens to all the jobs and chores etc that didn’t get done because I was conserving energy? Well, to be honest they often just get left and added on to the bottom of the list. I can’t play catch up because that would mean using energy that I don’t have to complete the tasks, which would put me into relapse, meaning more jobs and activities don’t get done.

Life with ME is a daily balancing act. Working out what is necessary, but also trying to do some things that are nice for me, and not just household chores or cooking the dinner. I’m good at delegating, and my family are 100% brilliant at taking more of their share and helping me.

So this is why I share this blog.

To illustrate tiny snippets of my life living with ME, a condition for which there is no treatment, and which currently is largely ignored by the NHS and the Department of Health. I hope for change, and if by reading and sharing my blog I can go some way towards improving things then I will have done my bit.

So heatwave? Yes, but not something that everyone can enjoy. Thanks for reading.