Why I Dread the Summer as Someone With ME/CFS

After I read the news that the temperatures in the UK were going to reach 27 degrees C (80.6 degrees F) this week, my anxiety levels rose dramatically and panic set in. I hoped I would have longer to adjust to the summer – what happened to spring? – but I need to face the fact summer is here. I’m sure most people reading this are thinking: What is she moaning about? Summer is glorious! All that sun, warmth, days out, the beautiful colors of nature, etc. – but it’s not so glorious for me.

The last few months have been good for me – probably the best I’ve had in the last five years. My health is improving, I’m doing a lot more and achieving so much, but I’m fearful that is about to change. Although the cold weather brings a lot of pain, it also allows me to do much more. I used to love the hot weather, summer was always my favorite season but now I dread it.

I dread the hot weather because it aggravates most of my symptoms, and restricts my ability to carry out even the smallest tasks that, during the winter I have no problem doing. The hot weather causes so much exhaustion, it zaps every ounce of energy from me – and I don’t have a lot to begin with. I have problems regulating my body temperature – it’s a common symptom of ME/CFS. In the winter it’s easy to warm up by turning up the central heating or using heated throws, but during the extremely hot weather it’s very hard for me to cool down. I use ice packs and fans, but that’s still not enough.

When I overheat I get very dizzy, I feel like I’m going to pass out. Have you ever gotten so drunk that when you lie down and close your eyes the whole world spins out of control? Well that’s what it feels like when I overheat – even when I’m lying down I feel like I am going to collapse. My heart rate increases as my body tries to cool itself down but this only increases my temperature.

Any activity, even speaking, causes palpitations and increases my body temperature. I shut down during the hot weather because I’m fearful of overheating, so I avoid doing even slightest tasks. Once my heart rate and temperature increase it takes hours to calm my body down. I am also hypersensitive to light; direct sunlight causes pain and heat on my skin causes a flare of my fibromyalgia pain. The heat also causes migraines which can last for days.

The air is so hot and dense I struggle to breathe and it’s unbearable for me. But having a panic attack in this environment is my worst nightmare. The usual symptoms of a panic attack – increased heart rate, difficulty breathing, sweating, dizziness – are magnified tenfold by the hot weather and my inability to control my body temperature.

After all the improvements I’ve made over the last few months I don’t want to go backwards. I want to continue this positive path but I fear the next few months are going to be very challenging.

But am I overthinking everything as usual? Is my fear of the hot weather the real problem? Is my anxiety making my physical symptoms worse? I know I cannot control the weather so why do I get myself so worked up about it?

Do you dread the hot weather? Do you find the hot weather exhausting? Do you have any tips for keeping cool during the summer? Or do you love the hot weather?