From the Lab Rat’s Desk – July 2, 2008

Strange how sensory changes and all it carries with it, insiduously even to me, play such a large part in robbing your of quality of life in this stupid illness. I was too drained to cook after walking to the pharmacy to pick up my medication so I bought some burgers for us. The odd part is that without my son, I would not have bought anything, because it doesn’t occur to me to eat, or drink, or sleep. All those urges are gone. Part of being a dysautomaniac. Not only am I never hungry (except the rare times for a few hours here and there when I am ravenous). This too might be interpreted by some as apathy, unless they knew me well.

If you have no interest in food or drink or rest, it might look as if you are apathetic toward life. I am not, I just am not feeling any of that usual stuff.

I sort of taste food, only a small part of my tongue really works which makes talking and swallowing a lot of conscious work. It is work to eat, so it is also not something I really look forward to. I stopped tasting after the infarct, that was pretty much the turning point, the temperature problems were from before as was the visual stuff and the vertigo and arrhythmia.

I had always enjoyed food, the smell the taste the textures – all gone. Can’t feel textures, or temperature. I burn my mouth all the time. I was heartbroken I could not taste anything, it was all like munching on styrofoam and drinking water. It was my sister who suggested trying the same exercises they use with stroke patients, to match existing memories with foods. In time it becomes so automatic that I do taste the chocolate but only in a memory from the past, so it still is a taste of sorts, but not the same. It doesn’t lend itself to spontaneity, I don’t go on a binge, and the flavour of ice cream is limited to flavours I clearly remember. Any ice cream can taste like pistachio or chocolate. As cumbersome as this is, it means some enjoyment.

Perhaps it also seems like apathy when I don’t dress to impress. Impress who exactly? And why? I have no-one in my life to please with my appearance and I am certainly not in the market for a relationship. My kids are grown up and I don’t worry if my appearance would embarrass them or not. I only dress for myself and what gives me comfort to wear. Compared to the amount of effort I once put out this is a drastic change and so might cause worry. I dress not to struggle with zippers, I like big buttons or one size fits all, pull on, pull up, pull over. I like colour, lots of it, so I wear it, it makes me happy. I am mostly along, so who cares.

I am a year away from being a senior, at that point some programs open up for me and maybe I can occasionally be with other people. Without personal transportation and a connection to some sort of group my social life is a complete bust. Almost all my friends are virtual Facebook friends, Flickr friend, relative and friends reconnected with on line. None of them have seen me, and none could be embarrassed by what I wear. Maybe once I am a proper senior I could meet some people again. If I have any energy for that sort of thing.

I did apply for volunteer help. I had coffee twice (at my expense) with a volunteer. He was too unstable (schizophrenic) to offer help beyond an occasional conversation. I received a note from the volunteer organization to tell me he had gone into an administrative position with them and they would try to find another volunteer. It Has Been Four Years And I Am Still Waiting.

I have a couple of hours worth of energy in any day. Competing for those hours of energy are personal hygiene, housekeeping, cooking, gardening, painting, pets and socializing. Anything beyond that is so very, very hard. It does not matter how wonderful or pleasurable it might be, it is so very, very hard. It pains me but I want so many times during my day to just curl up and give up, right at the moment, and it takes gargantuan resolve to get past the moment and move yet one more step, chew , swallow or wipe. Half of my day my arms feel to heavy to lift and I can’t even find my legs to move them. My eyes close without any warning and again the effort it takes to go against it, unimaginable. There are no pills for any of this, no easy way to adjust life to this. It surely was easier to feel happy when life had colour and flavour and sensation of texture, warmth – all gone. Thank goodness for memories which can take in some limited way their place. Thank goodness to for the computer which keeps me connected to the human race. I just have to hang in there for surely someone will come up with a solution, after all, no one likes the disabled hanging around reminding everyone of their own mortality.

aletta