Baby its cold outside…..

Brrrrr….it is definitely getting colder here in the UK and with that my pain levels soar!

A name given to it by researchers is dysautonomia!  This means the dysregulation of the autonomic nervous system which is what controls our homeostasis.  This is what keeps things like our heart rate, digestion, and body temperature within normal parameters.

In dysautonomia, these automatic functions can be askew, and in many of us with ME that’s highly apparent in our body temperature.

When a healthy person’s feet get cold, for example, the autonomic nervous system kicks into action, re-directing the flow of blood to warm up the area. As long as the situation isn’t extreme, the body should be able to overcome the effect of the environment.

Because of dysautonomia, though, when someone with ME gets cold feet, the body isn’t able to adapt properly, so the feet stay cold. Even putting on thick socks may not help warm them up. The environment has a greater impact on the body that it should.  I have first hand experience of this as am regularly wearing many layers of clothes including 2  or 3 pairs of cosy socks – and the heating is on but yet I am still cold!

So yes here is yet another wonderful element of ME – temperature regulation.  It is a common symptom for sufferers and can make the winter months a real battle.  We basically have trouble warming up and are affected by the cold a whole lot more than healthy people.

It’s crazy how many times I can feel like I am freezing cold – like when you get the flu and your insides are cold and they hurt – but I don’t actually feel cold to touch.  I can also be cold but sweating at the same time – its madness!  My feet are one of the worst parts of me to get cold, and stay cold.  I definitely invest in cosy, thick, warm socks for every winter to keep my toes nice and toasty and I have even bought a foot warmer too which is electric.  It is like a pillow but you put your feet inside and because of it working like an electric blanket I can set it up to have it in bed too – blimey, this is what my life has become!

A friend has recently, very kindly, given me her sleeping bag which she bought to go camping with but never used.  It’s one for extreme cold weather which zips you up like a caterpillar with a part that goes over your head.  I have never been so grateful for that act of kindness and can often be seen in my cocoon on the settee of a daytime!

My family often raise their eyes at me, especially my husband who really doesn’t feel the cold and still walks around the house in shorts at this time of year.  I have the heating on full blast, many layers of clothes and my sleeping bag or blanket to keep me warm.  It heat also helps with my pain too as the cold increases the intensity of it.

Don’t think for a minute though that the warmer weather necessarily brings respite.  This year’s heatwave was a shocker.  Okay, that’s not the norm for this country weather wise but blimey – the opposite happened in that so many ME sufferers were so poorly because they couldn’t cool down.  That damn temperature regulation again works the same way with the heat – it doesn’t know how to cool us down and we just get hotter – BUT we are also known to feel the cold even in the hotter temperatures.  It sounds absolutely crazy but I know first hand from fellow sufferers I talk to online how this year, even when it was hot, they were still in jumpers etc to keep warm.  Basically we can never win – it is either too hot, too cold and we only have maybe a couple of months in between where it is bearable.  Sucks doesn’t it!

Basically, everything we do, everything around us, every breath we take affects our symptoms and we are left alone (by the medical profession) to work it all out for ourselves.  To make things a little more trickier no sufferer is the same as the next so it is not as if there is a handy checklist to know what to do in what situation.  However, the community of fellow sufferers or spoonies as we call ourselves (I’ll explain that one in another blog!) are so supportive of each other and we all keep each other going.  We share our experiences and that is how we learn how to cope, how to manage and how to keep going.

Stay warm this winter and if you know someone who is chronically ill then please don’t leave them alone – spare them a thought – make sure they are okay – really make sure they are okay because the stubborn ones (like myself) will tell you they’re okay whether they are or not because we don’t like to bother you with our same old, same old.

Faith, Trust and Pixie Dust xx



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