Since summer has hit where I am currently located with full force – let‘s talk about temperature. About temperature confusions to be exact. Don‘t ask me why exactly that is, but a few very strange symptoms come along with this syndrome…well, it‘s an illness that involves nerve damage, hence the strange symptoms I guess. 😀 I have written two blog posts about ‚confusions‘ already, one of them was about taste confusions, the other one about pain confusions. Go check them out, one of them is a pretty funny read – you will probably be able to find out based on the titles which one I‘m talking about. Well, both of them are just covering the crazy symptoms I was having during the first few weeks after my diagnosis. I actually thought I was losing my mind.
Temperature sensation/control is the third body function that is not really working the way it should with this syndrome and out of the three it’s the one issue most apparent at the moment. The issues I was having with taste are completely gone by now and the issue with pain is a constant up and down. I am in pain – sometimes it’s almost not noticeable, sometimes my nerves are working like crazy.
Now let‘s talk about temperature. I don‘t really know where to start because there were quite a few situations where I noticed that something was wrong with my sense of temperature. Let’s start with the most obvious one: the daily shower. The first few weeks in the hospital a nurse had to help me shower because I wasn’t able to do it myself. That’s why I noticed even more that something was wrong. What I was feeling basically was the water temperature fluctuating from very warm to almost cold. First I thought that the temperature of the water was just hard to adjust, but I somehow knew that it might have something to do with myself, my body, my nerves. Also, I was in a hospital. It did seem kind of strange to me that the temperature would go up and down so drastically…I mean, there are patients being showered by nurses who might not be able to react as quickly as I did when I had the feeling the water was too hot. Well, let’s go on. When I started suspecting that it’s my body and my nerves behind it after all I started to pay close attention to my sensations and of course I noticed a pattern. The further I was going from my toes up to my calf, the more I was feeling the actual temperature of the water. So let’s say the water was too hot or too cold for my liking. I wasn’t able to feel it on my feet and legs. Everything was feeling lukewarm from about my bellybutton down. The further up to my calf I was going with the shower head, the more I was feeling the actual temperature of the water and thus if it was too hot or too cold. Since I was sitting on a shower stool (still am) when showering, of course the first body parts the water would touch were my lap and my legs…only when I put the shower head over my head I would flinch because then I would notice that it’s too cold. Okay, I think I have explained it in enough detail now…it’s just still amazing me how the body and the nerves work and which symptoms one is feeling when they do NOT work the way they should.
Of course, this is not just a GBS-thing. Almost everyone I talked to in the neurological unit I was staying in was telling me about similar sensations. A woman who became a very dear friend once said after showering that the shower isn’t working properly because it’s crazy how much the water temperature fluctuates considering we’re in a hospital. I told her that it’s not the shower that is not working properly – it’s our bodies. I think we laughed for about a week. 😀
There were other situations as well where I noticed that my body is absolutely not in control of it’s temperature. I was diagnosed in January and it was very very cold outside during my first few weeks in the hospital. Like crazy cold – for a week we had temperatures between -10 and -20 degrees Celsius. Sometimes I would open the window directly beside my hospital bed because I wanted to get some fresh air. I would completely forget about it and only when a nurse came in and said that it was freezing cold in the room I would notice that it might be a little bit chilly.
I generally did not really feel cold…I constantly had the feeling that I was sweating like crazy even though that was not the case. I started to measure my temperature ten times a day because I got so paranoid.
Once during physical therapy the therapist put an ice pack on different parts of my body and asked me what I was feeling. I was seeing the ice pack, I knew she got it out of the fridge and I knew that it was supposed to feel cold but I was feeling something completely strange. I was feeling something extreme, yes, yet I was unable to define it in detail.
I’m not gonna lie, these things fascinated me from day one. Even though it was the most difficult, painful, traumatizing time of my life – my fascination for these batsh*t crazy symptoms was probably one contributing factor why I made it through so well mentally…even with the pain issue I was genuinely more fascinated than scared sometimes.
I have always been a person that doesn’t like it when it’s too hot…I do like the summer, but for example I could sleep with an open window the whole year. I live in Austria by the way, we do have pretty cold winters. Now everything is just strange…as a whole, I still like it if it’s quite cool in the room at night but my hands and feet are still freezing cold. In retrospect this has been one of my first symptoms. I was diagnosed in January and back in November I started sleeping with two hot water bottles – one for my feet and one for my hands. I wasn’t cold as a whole, I was still only wearing a light shirt and underpants as always…but my hands and feet were so freezingly cold I actually needed two hot water bottles every night…now I know why that was, but back then I and everyone around me was kind of confused by my behavioral changes.
I have read about a lot of others not tolerating the heat too well. I have to say that I did not notice something in particular until a few days back when temperatures really hit high summer levels where I am. Now, my feet and hands are definitely crying out over the heat, the nerve pain is getting worse again, but I am hopeful and confident that it will stay within a tolerable pain level over the summer.
Thanks for reading my post. As always, if you have any questions, remarks, experiences to share,… I would be very honored if you would take two minutes of your time to comment down below. Answering to every single one. 😉