Silly thing is, I live at one of the german HotSpots and this heatwave the end of June brought more than 15 days with degrees way above 30°C, the final weekend we even reached 42°C. 😫
Our little apartment got so warm - it reached 35°C permanently during the last days. I live her since a while, but it never got that hot indoor! Despite of all the heat protection steps we did (shutters down, sun protection in front of the windows, windows closed the day and wide opened during the night) it got so, so hot....
The illusion of controling
This weather brougt another lesson for me. During the last years I got to strict Pacing scheme, so I was able to rise my energy a little, tiny bit - and still staying way behind the level of a healthy person! WAY! Unfortunately, I have to write it like this as a sick person, especially with a chameleon disease like CFS/ME. I have to underline it with a neon text marker to prevent all those people coming around and saying: "Oh look, it works out!"
As this Pacing worked out so well, I had the feeling of having my fate in my hands again, at last a little bit. I felt safe and thought: Hey, I got it! But this was foolish in the end, as we never have real control in this sickness. I can care for myself with greatest discipline - but extern circumstances like this heat are able to reshuffle the cards completely.
When this heat started, I was still quite positive. We often had hot summer seasons, a lot of heatwaves. But the heatwave this year is so different. It was more intense, the meteological facts bad (moist during the first days, later not a bit of wind, so the heat bell hang over the area of days, unbearably) and the wave is way, way longer than usual. Indeed we had until now, middle of June, as good as no day under 30°C for more than 4 weeks. All this lead to this heating of the apartment.
Heat is hard work
CFS/ME often comes with a limited function of the adrenals, so the thermoregulation in our brain is affected. This is related to the mitrochondrial perfomance dymanic, which is very limited with CFS/ME. For a healthy body sweating and cooling down happens in the background. For a CFS/ME body it is hardest work on cell level to regulate against the heat.
If the temp gets over 26-28°C our system has to work against it. Our problem: To cool the body down our mitrochondria (powerhouse of the cell) need a lot of energy (ATP). But as our powerhouses run on second gear all day long there is no energy left for the rest of ourb ody (like muscles or brain). The consequence may be a total breakdown, BrainFog, paralyzation.
Same time our adrenals are under permanent stress, too. They are meant to control our salt and liquid levels and the bloodpressure. But when it is hot, they start struggling. It is hard for them to keep the electrolytes in balance, so bloodpressure rushes down and the heart has to work hard to get the blood up to the body.
So - what to do while sitting in a temperature you are totally avoiding usually (I, for instane, really don't leave my rooms anymore usually, if the thermometer shows more than 30°C).
As the adrenal flushes out a lot of salt / electrolytes pure water doesn't help anymore. Boy needs salt and minerals for being able to keep the water inside the cell. So, always care for your electrolytes. Most of us don't get along with pills or powders (often offering a lot of syntethic aroms, too). But, maybe you get along with "Iso" drinks or are able to buy a "good" mineral water. Eat a lot of salt - pretzel sticks, salted nuts, salted cucumber and such. Talk about this with your doctors.
Emotional cleaning: Please curse!
For me I always found it quite helpful to get through such heat - this tiem, too - NOT to rate the heat as my enemy. So I try to be as strict as possible and skip sentence and thoughts like "Oh my god, how terrible this is!" or "I can't stand it!". I really ban them from my thinking and speaking. Because my subconsciousness and my nervous system always are listening. And if I think "How shall I handle it, it is so devastating!" I release another stress and alert reaction.
Well, to be honest, this worked out for me quite well ... and sometimes absolutely terrible 😉
I am no fan of toxic posititvy and I will not gloss over when all around me literally burns. So I allow myself to vent - but focused. I allow it for SOME minutes a day. All negative feelings may flow. I curse, I lament.
Some days I only need this one minute, others days a little more. Important is to let it out, but not letting it get your essence. Keeping the thoughts clean is one of the most powerful tools you own against this sickness.
And as it is with house cleaning: To reach tidiness and cleanliness you have to stir up dust and let it get a little messy at first.
I guess this analogy shows the effect of "cleaning" your emotions and thoughts - by letting the desctructive out at first and later replacing them with productive. It is okay to think out loud: "F... this heat! I can't hold on!" and to cry a little of anger, exhaustion and fear (if this alone isn't too exhausting at all) ... and afterwards getting calmer again.
And say: Yes, it is so exhausting and it sucks. But I will handle it. I can do it. It goes away.
Feet in the bucket, mind at the bach
This was what got me through these days. Besides biological tricks like spray bottles with water, fans, hydrating, electrolytes, cold pads and feet to a bucket for a little bath I figured out all doing me good in this heat.
Like resting, resting, resting and resting. Meditation (there are getting-along-with-heat-meditations on YouTube!), watching series or listening to AudioBooks (whatever the own stimulus allows). If it is this hot I - for example - find ease in listening to south american, indian or african music. Feeling like holiday sounds. Because when I imagine to sit somewhere at a nice beach I can give this heat another background and context. This lowers the release of stress hormones in my system. Somehow, I put a funny hat to the head of the heat (read this twice!). We are not friends because of this, but it weakens its ultimative enemy-image.
But honestly? After some days this didn't help a lot anymore, too. It was terrible and horrifying, quite simple. Since years I care so intensely for my pacing to save me from a real Crash and even rise my energy a little. I skip all and everything: Birthday parties, tea parties, theatre, traveling, walks (if more than 100m from bench to bench) and whatever. I run away from (ok, not running, running is long gone) every single sneeze or cough to prevent me from a cold and the following crash risk (of course, one can not prevent it fully) and don't go out a lot between September and April.
And then? Such a silly Omega-High comes along and simply smashes my supposedly safety and control feeling.😐
When the only way is through
The last days of this heat wave I really only counted hours and minutes and struggled myself from morning to noon, noon to afternoon... and so on. My ME produced a lot of symptoms I thought to be subjects of the past. It was like a heavy infection with high fever, but without a break. But the only way was through. I had no chance to leave my place, because the places of all the persons around me were quite as hot as mine or had no space for us.
I can not afford an aircon and my landlord doesn't allow on the top (I already asked for it years ago with no success). I have such an old, mobile aircon, but it is very weak and doesn't help and it is so noisy, this worsens my ME even more (I am very sensitive with sounds/noise and scents). So, there was no help.
I needed more than a week after the temperature lowered to round about 30°C to recover halfway, but I still am so far away from the constituion I had some weeks earlier 😞 This week is hot with 34°C for days again, this really doesn't help so much. But, I guess the apartment will stay cooler, as the heat is not that long, not that moist and and not that intense.
Cool down with your mind
Well, this is life with CFS/ME, isn't it? My house of cards with my wonderful pacing scheme collaped totally, just because of external circumstances. Nothing, absolutely nothing to do against it. And suddenly all the things that were little mounds in June are Mount Everests again in July :(
Anyway - it is important NOT to rate this as danger or disaster. Because summer will not last endlessly and probably it will not stay this hot all summer long. Two months ahead from now the first leafs of the trees will colour again and fall will come around. And with fall there will for sure come temperatures being way better to handle for my ME-body.
And especially now, these weeks, I realize another time, how grateful I am and how helpful it is to get out of the fight mode. We can do this with our psyche, mind. We can balance out with our thoughts without devalueing or glowing it. We can cool down this heat in our mind, even if we can not do anything about the temperature around us.
A cooling impulse for your nervous system (mini practice)
Finally I wanna hare with a very practial tip, a little life hack how to calm down our nervous system during heatwaves. It is a breathing practice from Yoga, but don't be afraid, it should work out even with severe CFS/ME. Just do it slowly and gently.
Practice 1: Cooling down gap-breath
Lay down or sit down (depending on your energy level)
Form your lips as if you would try to spell out the letter "P", a little sharp but curled to the inside ("P"). Lips mustn't touch each other - leave a small gap between.
Inhale sharply through this gap (but only in a way thast does NOT exhaust you!) With this you create a cool breeze and your mouth cavity as your palate and throat will cool down immediately.
Exhale normally through your nose and repeat 2-3 times.
What happens in your body:
In your mouth and throat area are big parts of your trigeminus nerv. This nerv gives impulses of temperature immediately to your brain. The sudden physical cooling show your brain immedaitely: "Danger gone, temperature lowers!". With this you can calm down the stress reaction of your body.
Practice 2: 4-8-Cold-Imagination
Lay down and inhale through your nose counting to 4 and exhale through mouth or nose (as you wish) counting to 8.
Leave a small break between inhale and exhale (must NOT feel exhausting!)
When exhaling imagine your body cooling down gently. Imagine a blue, comfortable coolness like when you enter a nice swimming pool, the ocean or a wonderful lake. This coolness flows all over and through your body as long you are exhaling.
What happens in your body:
By the slow exhaling (double than inhaling) you will activate your vagus nerv. It is the main nerv of the parasympathicus - and this is the break pedal for stress and alarm. This nerv slows down your heartrate and shows your system it is allowed to end the fight mode.
By imaging a cooling scene like a swim in the ocean your anxious system slows down. Your brain is not really able to difference between reality and an intense imagination. This viualized coolness helps to stop the release of stress hormones.
Both practices offer precious impulses for your nervous system to leave the "red alert". Just try it out :)
I hope you all will get safe through summer heatness 💦💕
