Why having ME/CFS makes me dread the summer

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After I read the news that the temperatures in the UK were going to reach 27 degrees this week, my anxiety levels rose dramatically and panic set in. I hoped I would having 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 colours 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 5 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 favourite 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 got 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 are 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 breath 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 10 fold 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 struggle regulating your body temperature? 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? What do you love about summer?

EDIT: I wrote this post 4 days ago (before the heatwave) but I hadn’t got round to posting it because the hot weather has hit me so hard. I have had a migraine for 2 days now and I have crashed quite badly. I guess it answers my question; Is my fear of the hot weather the real problem? But I will not let this defeat me. I am now looking at installing air conditioning in my room (I will find the money!), I am determined not to let the hot weather ruin all the positive steps I have made over the past few months. Take care x

Edit No 2: I bought the air conditioning unit and it’s a life saver. Unfortunately it’s rather loud so I can’t have it on all the time but it certainly makes a difference.

#ajourneythroughthefog #chronicillness #MECFS #mentalhealthawareness#fibromyalgia #blog #anxiety #depression #dread #selfcare #love #heatwave#summer

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8 Comments

  1. I also get a lot sicker in the hot weather, and especially during dramatic temperature changes. Yesterday it was 58F where I am; today it’s 78F. As a result, I’m flattened and have trouble breathing.

    I have trouble breathing before storms, too, and thought it had to be coincidence until I looked it up on the internet and saw dozens of people with asthma and COPD saying the same.

    The theory I saw goes like this:

    When the air pressure drops (as before a storm), each breath you take contains a little less oxygen than usual. The same is true of when it gets hotter: the air expands, and each breath you take contains a little less oxygen than usual.

    It’s enough to be noticeable even by healthy people, who will also say it’s hard to breathe on hot and wet days; they just deal with it far better than we do.

    IMO, it’s not anxiety. Try something that expands your bronchioles like Olbas (or Vicks, if you have nothing else). That helps me temporarily.

  2. Wow. I have ME and weird temperature control, I feel like I’m overheating most of the time even in the winter. Summer does tend to wipe me out more than normal, but I see I could have it a lot worse. I’ve got some tips to share though they won’t all be useful to everyone.

    Get a big fan if you haven’t already, and during the day keep it in the room you spend most of your time in. If that’s not your bedroom, half an hour or so before you go to bed, move it into your bedroom and direct it at the place you will be sleeping.

    Keep a jug of drinking water in the fridge, or several bottles to take out during the day if that’s easier. If you need to cool the water down quickly, stick it in the freezer for a little while–though best not to do if you’re likely to forget it’s there! Also keep a spray bottle of water in the fridge for squirting over your face, shoulders, etc for a quick cool-down.

    Cold showers. I turn the water on lukewarm and then gradually turn it down. When you’re done, leave the warm bathroom as soon as possible (ideally without drying off first) in favour of a colder room. I stand in front of my fan for a few minutes before drying off and putting my clothes on. I do this right before I go to bed, which stops me feeling like I’m overheating in my bed and makes it easier to get to sleep.

    If a shower isn’t suitable for you, just try using the spray bottle or splashing cold water from the tap, then stand in front of the fan. It’s not as effective but every little helps. You can also buy cooling sprays like Magicool which as far as I can recall give longer relief (I’ve lost my can so I’m basing this on my memory of last time I had it). I also just yesterday learned you can get cooling blankets and things to put over your shoulders to cool you down, though I have no personal experience using these.

    Hope some of this helps someone.

  3. If you suffer with chronic fatigue and summer weather, in particular sunshine making symptoms worse, it would probably be worth mentioning to your drs plus asking if you’ve ever been tested for an ANA blood test/ possible Lupus. Lupus has similar fatigue symptoms to CFS/ME and people with Lupus are usually sensitive to sunlight and UV light, it can cause symptoms to flare up

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