CHAOSTOCOSMOS

Thursday, 24 January 2019

ME and Temperature Regulation







It is so difficult to explain to people why I so often really cannot leave the house in winter, but I'm glad to see this phenomenon explained so well and that I'm not alone.

That's one of the major problems with ME and the isolation it causes: we feel as if we are the only ones; even we cannot believe the bloody weird symptoms we get, so believe ourselves to be "making them up". Well, we're not and it's bloody hell.

Only this week, I've had to postpone some (very needed) health appointments and one of several reasons for doing that was because I knew what it could mean in terms of symptom exacerbation if I was to go out at this time of year and it was a risk I was not willing to take. But also know how wingy, whiny, pathetic and unbelievable the reasons sound - which invariably causes people to react negatively - so I've given up explaining "in person" and wrote that my husband had drafted the email instead. Sounds more authoritative from a 3rd party, who is also a man. I shouldn't have to do this, but it's just one of the methods that those of us dealing with this crap have to employ to cope.

Anyway, getting back to the temperature. I can be shivering one minute, profusely sweating and overheating the next. I can have a temperature below normal, but be suffering fever-like symptoms. Nobody and especially not doctors will believe me.

"My personal thermostat was blown. I am mostly OK in temperate climates but even the generally moderate temperatures of a normal British winter are enough to cause me significant problems. If I am outside for more than a few minutes, my core body temperature drops very quickly. It can even happen inside, if the heating is inadequate." 
Snap ...
"If I stay out for too long, I begin to enter a catatonic state whereby I lose awareness of what is happening; at this point it can become dangerous. I then have to very deliberately monitor myself and everything that is happening around me and get myself back into a warmer environment as quickly as possible. No amount of extra clothing prevents this from happening.
In fact, I would add that extra clothing makes it MUCH worse. The weight of the clothing just adds to levels of fatigue; extra clothing restricts movement further and adds another stress to already painful and tired muscles and joints; and the extra clothing will cause overheating - not just sweating, but nausea, faintness, maliase ... VERY quickly.

That's how I've ended up lying on pavements or sitting on shop floors. And that brings a whole raft of other vulnerabilities to abuse, which at the very least has included people clearly avoiding me thinking I'm drunk; people not offering any help because of those misconceptions - and I am speaking from experience, not some vague anxiety.

The exposure and overheating, in turn, then causes us to get colder still to the core.

I've tried to explain before that cold actually hurts. It always has for me, even when I was a child and I don't think cold hurts "normal" people, but I have nothing but my own experience to compare. All I know is that it is painful beyond function or distraction; that if I am allowed to get cold, it will feel like my bones have been replaced with sticks of burning freezer ice and, once cold, it can take MONTHS for me to warm up.

It's not unreasonable for me to avoid anything that will make things worse. And as with Valerie Eliot Smith, a move from the UK to a warmer climate is, I feel, the only way of managing these symptoms and being able to not be housebound for most of the year.

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