I haven’t written about symptoms for a while so this blog will be about the inability to regulate body temperature. Fortunately, I can use today as an example to highlight how tricky it can be. Today I attended a 4 hour staff training event. It was informative and enjoyable; however, the building it was held in is old and very cold inside (because of it being the summer months, the heating wasn’t on). The first lecture theatre was so cold I started shivering after around 30 minutes. I wasn’t the only person affected but because of my M.E. I felt the impact of the cold much more intensively. My legs were shivering and my whole body felt like a slab of ice. I was starting to lose sensation in my legs as my body seemed to go numb to cope. We were in this room for 2 hours and at the 2 hour point I was very grateful for the cup of hot water (notice not coffee – my body hates coffee). Moving around for 15 minutes warmed me up slightly, but the next room was just as cold. Another 2 hours in this room and my body felt like it was turning to icy vapour. After the event I struggled to get warm. My face/head felt incredibly hot but my body was numb with cold. It took me a good hour to warm up.

With M.E., because your body uses so much energy trying to warm up/cool down, often ineffectively, other symptoms flare up in response. I have felt exhausted and brain fogged all afternoon, because of the energy used trying to be a non-icicle. On the flip side, excess heat can feel overwhelming. If, for example, I am in a hot car, I feel stifled very easily. I feel like I can’t breathe and often have to resort to deep breathing to cope. Guaranteed way to annoy your fellow passengers – open a window so they get a cool blast when I have to cool down!! Let me clarify, I am not talking about sauna hot, for a non sufferer it would probably feel pleasantly warm. My body reacts as if it is overheating and goes into overdrive to cool down.

As I said in my awareness talk on 12th May, inability to control temperature is one of my own personal issues that I have to deal with on a daily basis. I usually feel hot through the day and then by bedtime I am shivering, this is the same EVERY NIGHT, regardless of season. To warm up enough to get to sleep I wear thermal pj’s, thermal socks and have to sleep under 2 duvets. I have to do that or I will just lay in bed shivering unable to drift off to sleep. I remember when I was on holiday in Malta last year,  requesting extra blankets for my room. I think they thought I was nuts! It was, on average, 15 degrees centigrade at night and every room had air conditioning/heating…I don’t think they understood how my every need wasn’t being met!

As every sufferer knows…layered clothing is the only way forward….on, off, on, off!!


Sally xx