Was it worth it? That is the obvious question that no one has yet seemed to ask and yet surely must be on people’s mind. Elizabeth goes to graveyard in the sun, spends over an hour to get dressed up, knows she has a fever, plays in graveyard has attack and ends up sick for many, many days. Indeed a slight fever has returned tonight but I believe that only indicates a weakened state in general. So, is that REALLY worth it for a few pics, all that pain?
Well no. Except with chronic and degenerative conditions there is not A+B=C, there isn’t even always A+B=Gorilla on your chest! I take Echinacea twice a day to help make sure I don’t GET a fever. And I haven’t had one for over two years. I take aspirin every day to ensure I don’t have TIA or seizures. But if I went and did,,,..Ice sledding and had a seizure, the question would be...WOULD IT HAVE BEEN WORTH IT? But I think the question should be: “What is the value of a life, if after ALL the precautions you have taken, you are still too scared to LIVE IT?”
I took what I believed to be reasonable precautions against infection. I now believe that I got a cold which started ended sometime Sunday, ending on Monday. That is what the PHYSICAL evidence of how colds progress demonstrate: Sore throat, slight fever, feeling better, nose fills, sinus cavity feels as if it will explode, cavity drains, person better. That all occurred, and finished by Monday...well except the last one. Because it seems that in pushing my body, myself, I learned a “new trick” that my body can do. After a 14 hour medical appointment without rest where a nerve conduction test is performed up to six times in succession, and I get no sleep, that pushing some more a few days later creates what I term an “unbalance.” Or rather, instead of ME having X amount of spoons, to spend on what I can do, it seems my central autonomic system has a certain number of spoons and when pushed, it just sort of lets go of certain things, like my heart getting lots of erratics (we knew about that). And now, during periods when the temperature is hot already the ability to maintain function over my body temperature (which occurred once for two to three days early on last year actually). So yesterday I get a fever at 1-2:00 pm and I wear the ice vest but I am not as burning hot like the previous night and don’t need extra ice. Tonight we will see if I need the vest at all and how long. And we will see if the fever, which returned at 8:30-9:00 pm returns tomorrow at 11:30 pm or not at all.
That’s the boring medical stuff that I have devised because I REALLY don’t want to do this all over again and again and again. But more importantly should I take risks and what are “reasonable risks?” There isn’t anyone around with a big book saying, “This is how you should change your lifestyle and these are the benefits.” To be honest, the medical advice I have been getting is more along the, “Try to keep yourself out of hospital long enough so that we can do more tests on you.”
I will say it plainly: I do NOT have control or a clear idea how to maintain my condition. I used to, then my fingers changed colours, then I had a bunch of TIA's, then I got a long fever, then I got heat exhaustion all the time, then I got heat stroke, then I went into shock three times in 24 hours. I DO NOT KNOW. And so far, no one else seems to know either. Linda was on the phone today working with the people on the medical alert bracelet to put the “most important” things that would likely kill me. That’s the phrase they and Linda used, “Kill her.” Turns out they didn’t have enough room. So we had to make a choice, then realized we forget to put “heat intolerant” so called back (now ever more things NOT on the braclet, should I get two?).
I want to get better. I went for a wheel down to the video store on Tuesday because medical journals say that total rest during an cold or flu isn’t the best, light exercise can help. Except my cold was over, and I was just stressing my autonomic system, using up a “spoon”.....maybe. See, that’s just a working theory. I want to figure out how to get my system to have more spoons so that I don’t go into heat exhaustion (I think having an indoor area where I don’t strain my body 24 hours a day to regulate me WITHOUT sweating would be a start). I want to do things. I want to write, to wheel, to get outside, to get into a vehicle for a reason OTHER than a medical appointment. And yes, every single one of those desires is a risk. I want to take trips, I want to last LONG enough to take some trips this fall. And yes, pushing myself like I did in Japan WILL, no question, WILL, make me too ill to continue. So I have to figure how much to push. Those are all risks. I take risks very lightly, and I take them very seriously. Because one the one hand, what is the worst that could happen: I could die? On the other hand, if I don’t balance this correctly, the party is over! I guess it depends how much I want to do something on how willing I am to bend that envelope and find out, in my current state, what the result will be.
Which means, I will do what I do. And yes, that may not be things you would do. But then again, isn’t that what people first consider almost EVERYTHING that I do?
So was it worth it? I have a picture of me as the sexy wanton wheelchair girl. How could it not be worth it?
See, the only different between ME doing things and YOU getting on a plane is that you know your chance of dying, needing medical intervention or having something horrific happen is 1 in a million or higher while MY chance is about 1 in 5 or less. So do I do five things, and have five memories and try to figure out what NOT to do next time, or do I have ZERO memories, and live in a little shell. I dunno, I kind of think that I would want people to know whether I am alive or dead, and if I ACT like I am dead before I am, then how would they tell?
1 day ago