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Wednesday, 3 June 2015



*Foggy* Can you see me?
Foggy is currently loving life in the Philippines with Tony and co. So far they have been in Angeles but have now travelled on to Olongapo. He will be back in the UK in around 10 days. Then it's on to Dublin! In the meantime, Foggy has given me permission to write another blog, so here goes....


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

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