Saturday, November 10, 2012

Tough month

Every now and then I get in a bit of a funk.  You can probably tell by my last post that this is one of those times.  It usually happens when one, I've been sick a lot recently, two, I haven't spent much time with friends, and three, I don't have anything coming up to look forward to.  Of course, number two happens because of number one.  (this would be one of those times in which my childlike husband starts giggling and making jokes about peeing - number one - and pooping - number two)  When I have mito crashes more frequently, or I'm just generally more ill (my muscles are a lot more weak, I'm fatigued and tired all the time which means sleeping a lot, I'm mildly nauseous all day, and I just have a general ill feeling), I don't get out of the house much or visit with friends.  Over the last few weeks, I have had those exact problems.  I had a severe mito crash 2 1/2 weeks ago and a couple of mild ones since then.  Many of the days in between I have just felt generally ill.

My pain has been a LOT worse over the last month as well.  Every time I'm up and around my neck, head, and shoulders start hurting worse than ever before.  And it starts up within a few minutes of activity.  My pain is normally controlled well, so it's usually kept down to a 2-3/10 on the pain scale.  However, recently, my pain has been closer to a 6-7/10.  My medications are just not cutting it.  There have been many days in which I am in tears by 5 or 6 o'clock because I just can't stand the pain anymore.  Every minute or two I'm trying to stretch the muscles in my head, neck, shoulders, and arms.  It never helps but I feel like I have to do it.

The pain in my head, neck and shoulders is called coat hanger pain.  It's called that because the pain is in the shape of a coat hanger.  It is very typical in dysautonomia.  Muscle pain is very typical in mitochondrial disease due to muscle weakness.  Doing everyday activities is like lifting weights at the gym.  So, I don't know why I'm having increased coat hanger pain.  There're a couple of likely possibilities, though.  My dysautonomia could be worsening and preventing adequate blood flow to my head and neck.  Or, my mitochondrial disease could be worsening causing increased muscle weakness, including in my neck, which would then cause pain when I use those muscles. That makes sense right now since my legs have been weaker recently too.  It could be a mix of both scenarios.  My neck pain is better when I'm laying flat and when I'm able to rest my head against something.  I have, therefore, been using the headrest on my wheelchair all the time now.  I never thought I would get to that point... at least not any time soon.

In addition to the increased physical problems causing my poor mood, I've been a little down because of the lack of supporting friends at the moment.  I have been trying to make new friends with a couple of people I met through the walk who're in the mito community.  It has been nice to talk to people who know what you're going through and dealing with.  Plus, I feel like I can give something back because I can relate with them as well.

Unfortunately, it takes awhile to build friendships.  In the meantime, I'm lonely as hell.  I can't get out of the house as much when I'm sick, which I've been recently, as I discussed already.  People aren't lining up to come see me or call me either.

Sometimes you just really need a friend to come give you a hug and tell you everything's going to be okay.  Sometimes you try to let your friends know that and, despite all the dropped hints and even blunt statements, you still don't hear from anyone.

Sometimes it's just not worth the effort anymore.... any of it.

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