I do not have any health issues. Ok, I am paralyzed, but I mean besides that. I do not take medicines of any kind. It has been almost three years since the last time I had the common flu. I do not have any pain whatsoever, except when I have it cold.
Since I cannot move, I have it cold almost all of the time. It has to be at least twenty degrees Celsius (70 Fahrenheit) and not windy before I can feel comfortable. In addition, I am living in a country that has an average of seventy-three days of summer in a year. I have been in this situation for twenty years now, and I still do not know how to dress myself up warm enough.
Even in the summer, I can get cold. It just takes a bit of shadow and a little breeze. What for the average person would be a bit chilly is already start of feeling cold to me. I have to put something on immediately before my body gets cold, because once it does it is very difficult to get it back warm again.
On colder days, my body functions slow down, and the whole body is all closed. Shoulders get tense and tighten up. They also curl forward like protecting body from cold. Muscles especially in arms shorten because of the cold that means my elbow do not reach the wheelchair’s armrest as well what means that I lose balance easier. You cannot even imagine what kind of horrible domino effect cold causes.
When I get cold, I get very spastic. Spasticity means violent, involuntary muscular contraction. Simply said; “it stretches out and becomes almost as stiff as a log.” Every muscle in my body starts to hurt so bad that it can even bring me to tears.
I truly love everything about summer with one exception, flying insects. Especially mosquitoes. I get panic reaction when they start flying around because there is nothing I can do if they land on me. I hate mosquitoes so much. If I am sitting alone outside and they land on me all I can do is just watch how they suck my blood. Watch it getting bigger and bigger until they cannot no more. Finally, it flies off and then starts that horrendous itching. If I could scratch myself, I would just deal with it but no. I have to go through that nightmare of spelling “s-c-r-a-t-c-h r-i-g-h-t a-r-m… h-i-g-h-e-r… l-e-f-t… l-o-w-e-r… etc.” and after this, they do not scratch the exact right spot where it is itching.
Whenever I have an itch on a specific area of my body, for instance: hair on my face, skull itching, a tear falling, etc. my body gets a spastic (stiff) reaction. It is very unbelievable how, for instance, one small hair on the nose can cause all kind of funny faces, legs going straight and in worst possible case me sliding off from the chair onto the floor. One reason I always wear a seatbelt.
Right after the stroke, it took me pretty much time to get used to the fact that I could never willingly touch something again. Not just touching things, but also touching people. You may think; “what is the big deal?” well it is when you cannot show the ones that you love what you feel. Your heart is overflowing with emotions and you are unable to express yourself by either words or touch.
We all know that sometimes just holding someone hand can be a source of comfort. I cannot even do that. Only thing I can do is stare at them and hope that they can see what I feel when they look into my eyes. It gives a whole other meaning to the saying: “so near, yet oh so far.”
It feels horrible not to be able to caress Happy (my dog) or to touch Henning, to play with his hair or to curl myself to his arm when watching a movie.
Sometimes when I look at my niece, I thank god I do not have children because I can only imagine how horrible it would feel like if I could not touch them.