Sunday, May 23, 2010

Better than I was the other day

I am feeling better than I was the other day. It hits me like a truck when it starts to act up. Don't get me wrong, everyday I feel like crap and struggle, but there are some days where I am literally couch or bed bound, so sick that I just can't function at all. I lay there feeling as if death is on its way. It comes at times with a deep feeling that I have been poisoned and a nausea that seems to fill my whole body.

What I really am upset about the most is not being able to stand most days past 15 minutes comfortably. After standing that amount of time and sometimes sooner the dizzy spells start and when I am at my sink trying to do dishes I have the feeling as if I am falling towards it. My heart rate on a bad day will be 150-160 standing, thankfully most days it is 120-130 standing. Then like magic I have a good day or a few good hours where standing it is 80-96.

This of course keeps me a prisoner in my own home. A long time ago I had anxiety that kept me inside, but for completely different reasons. Even back then I would just shop at the store at night. Now it doesn't matter what time it is. I am just trapped.

There was a fire in my complex last week and my main concern at first was that it was in my building. Not because I would lose my stuff in a fire, but because it was hot out and heat can make me so much sicker. I was concerned that I would have to go outside and sit on the lawn. There is no way I could just stand some place. Thankfully it was not in my building and also turned out to be a small kitchen fire, no real damage.

The other day I had yet another argument with my mother when she called me. I can't take it anymore esp. when I feel very ill. They (my parents) refuse to hear how sick I actually am. They are still stuck on some agoraphobia kick and that I am somehow just mentally ill. She says to me "I know you don't like to leave your apartment, but its warm outside, why don't you go out and sit on the porch." This sent me into a rage, right or wrong. How many times over the past 16 months have I said I can't take any type of heat and how sick it makes me. I can hardly even take showers anymore. When I do they are cold and that is not very comfortable. I would love nothing more than to be able to sit outside. It has nothing to do what so ever that "I don't like too."

Since I had an argument with my mother on May 2nd I have been biting my tongue, till that statement was made. I just talk about general things like the news, and listen to her health issues. My father of course never calls and never has unless it had something to do with a bill. I have had a lot of time to think over this past 16 months about my life and my past. I love my parents, but I also realize the level of emotion abuse that went on in that house. Yet, I always carry this guilt around because being this sick they are paying my half of the bills. Money is not love though and I am beginning to feel more like a pet than a son. Month in and month out the bills get paid, but I am kept at the same level of illness and a refusal to help get me someplace that I might find that help. I much rather be able to get to a doctor out of state who deals with these issues. I have hit a wall in Albany. I can't get through to any doctor how bad off I am. I tell them the same things I write about in this blog. However I sit here and there looking fine. On the outside I look 100% OK unless I go pale. They stay stuck on how it is anxiety and ignore that this so called mystery anxiety only happens when I am standing. Not to mention while anxiety does cause a fast heart rate it does not only do it while the person stands and then stops when the person sits back down. An average heart rate increases about 5 to 15 beats when a person stands. I increase 25-50 beats.

I am effected by weather changes in the worst way. Esp. if the weather turns hot. This coming week we are going to be in the 90's a few times. I am not looking forward to that. I just hope it isn't that bad.

As far as people telling me I am depressed. That really annoys me because with all the crap I deal with I am happy. As happy as one can expect. I am lonely a lot, pretty much at this point have lost my family. No real life friends. Yet, I am hopeful I will find an answer somehow and be helped. I am not miserable. I read and go online. I laugh at TV shows and as soon as a bad spell leaves I am right back to trying to help myself through exercise and eating well. I have days where I cry and cry hard, but that is because sometimes what I deal with becomes to much, it all crashes down...so yes I allow myself to have a pity party for awhile and then I come out of it and keep fighting.

I am sorry that my mom is still sick, the truth of the matter is even if she wasn't it would be the same. It is how it has always been. My father and mother have always been this way. What finally clicked in me a month ago was that they will never change. I am chasing after a relationship with them that I will never get. So I stopped.

3 comments:

Anonymous said...

Hi. This is a message from Norway. It feels like you and I have some kind of the same struggle against a lot. It's difficult to make people really listen and maybe understand how real this illness is.
I will continue reading your blog. I'm staying at my home all the time, so it made me glad when I found your blog. Take care :-)

Anne

Robin said...

Brian,
I can completely understand your frustration. I have (and still am) experienced the same problems. I have been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). I was looked at as the "crazy lady" for awhile prior to being diagnosed as well.
Since I am a nurse, and a very strong willed one at that, it did not take as long for me to get diagnosed. I did, however, have to go to Mayo clinic to do so. No one in my community truly understand POTS. Which is probably why you are having so much trouble.
Try going to one of these 2 websites and finding a doctor near you that might be able to help you.
Feel free to email if you have any questions.

http://www.dinet.org/index.htm

http://www.ndrf.org/physicia.htm#sectM

Good luck!
Robin

Brian Underwood said...
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