This blog is serving as a tool in Christie's on-going attempts to have the best life she can despite the limmitations and challenges of a serious illness. It is a collection of observations, discoveries and questions she is collecting to help her design the life she wants, despite the limmitations and complications of this illness.




Tuesday, November 15, 2011

Flying

     I almost got kicked off of a United flight today. I didn’t - I’m still on that flight as I write this, somewhere over Kansas, I believe.
     I arrived at the airport, traveling alone after visiting my husband who is working out of state. I hate traveling alone because this illness makes a day with that kind of energy output miserable, and because, if I begin to have problems, I am very much alone in dealing with them. We’d ordered me a wheel chair, but I didn’t go get it because a) I wasn’t sure where to go for that and b) I thought I could get by without it. I began to question that decision at the first long line I had to stand in. Standing for very long is difficult for me. But my gate wasn’t far away, and, while I was feeling ill and shaking a bit by the time I got there, I made it to the gate. I told the woman at the desk that I would need to pre-bored, as I didn’t think I could handle standing in another line, and she got me on the plane first thing.

     Since there were no other people boarding right then, and I was starting to see signs of my temperature skyrocketing (which can lead to a host of problems if left unchecked) I asked the flight attendant for some ice, mumbling something about why I needed it. He was very concerned and brought me a bag of ice, a cup of ice, and a jug of water. He sat down next to me to ask me to explain what was wrong and repeatably ask what he could do to help. 
     I was flattered. Usually plane rides are miserable for me, as I am fighting off being sick most of the way and the things which could be done to help me (such as giving me ice to bring my temperature down) seem to annoy the flight attendants, so I rarely ask. I had certainly never had anyone seem so concerned and helpful before. It made me feel rather warm and fuzzy. Given that, and because, until the ice started working, I was experiencing one of the symptoms of higher temperature (having trouble thinking clearly) I was neither very organized, nor very careful, about what I said. I told him I had chronic fatigue syndrome and it had done some damage to my nervous system, so I couldn’t regulate my temperature quite right anymore. I needed to get my temperature down or I could pass out. I told him it wasn’t life threatening, but that if I didn’t get my temperature down I would likely progress to the point of being unable to think clearly or remain conscious. I took his bag of ice and held it against me cheeks, my neck, my chest, and it quickly began to help. 
     He returned multiple times to check on me as other passengers boarded the flight, and at some point he went and talked to the other flight attendants and gestured back to me.  A few minutes later, another flight attendant came over. She said, “The captain is not comfortable with you being on this flight, given the health conditions you described.” And proceeded to try and convinced me to get up and exit the airplane. 
     I was more than a little thrown by this. I told her I really was likely to be okay, the ice was helping a great deal. She insisted for some time that they were really uncomfortable having me on the flight if it was possible that I might pass out. I insisted for some time that I really would be fine. She eventually stopped short of ordering me off the flight when I eventually lied and said that the ice had taken care of the problem and there was nothing wrong anymore. She finally went away.
     I am not sure what to make of that. 
     Certainly, I can see that they would not want someone to get on a flight who might have a medical emergency in the air. But I have these problems every time I fly. And how else did she expect me to get home? And if she was worried about the liability of it, I would have to say that kicking me off a flight because of an illness I can’t do anything about would not have been the way to avoid a lawsuit. 
     I hate flying. I hate it because the mix of standing in lines, stuffy, warm air, and long days without rest conspire to trigger some of the worst aspects of my illness. I can normally expect a flying day to consist of exhaustion, nausea and a lot of pain. But worse than that is the, a constant fight to keep any of my symptoms from getting from getting out of control enough that I become incapacitated in some strange airport all by myself. I have flown dozens of times in my life and, while most of them have been miserable enough to bring me to tears, only twice have I failed to keep my symptoms under control enough that anyone else had to become involved. But, because of this same illness, I am unable to handle driving long distances, and taking the bus or the train is often worse. My family lives half way across the country, my husband works in a different state, and sometimes travel cannot be avoided. 
     And now I sit here and I have thrown the bag of ice away because my temperature is stabilized and I don’t think I will need it anymore. And I am in pain and exhausted and my hands shake almost too much to type. But I don’t know if I should rest my head against my seat or let the smile off my face. Not that they can do anything now - we’re half way to Denver, 10,000 feet up. But I have to get on a connecting flight in Denver and if I really let myself collapse, would they let me on that flight? I’m not in danger of passing out anymore, just too exhausted to hold up my own head. But will they recognize the difference? Or is there a difference to them?
     Should I not even have ordered a wheelchair? 
     But of course, that is ridiculous. I really need that wheelchair if I am going to make it through the next flight without being in danger of experiencing anything but my own private misery, and I can’t really imagine them making an issue of it now. Not unless I really do seem to have trouble functioning, anyway. She just... she really was very insistent that I get off the flight. I thought for a while that she was not going to back down. 
     I’m just not sure how I should feel about this situation. I think I’m angry. But should I be? Was it reasonable of them to be concerned, given what they did and did not understand? Or is it reasonable for me to feel I should be able to fly, even if I do become sick mid-flight, even if I am in some danger of passing out? 

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