climbing out

The past week or so has been extremely difficult.  I fell and fell hard.  Not only with what is going on, but I am also a sufferer of Seasonal Affective Disorder and as we approach the shortest day of the year, I feel its effects very strongly and often I feel like I literally cannot control them which is beyond frustrating.  You want your brain to do one thing and yet it demands another.  I feel like I should be a bear when winter rolls around, it’s not fair that I can’t just eat a whole lot and then go to sleep for a few months, awaking when the sunshine decides to stay longer than a mere third of the day.

My husband has resorted to giving me pep talks.  Oy.  But in doing so he has made me feel better because I see him wanting to fight and fight hard.  He told me how depressed he was after this last hospitalization.  That he just felt like he didn’t want to fight this.  But then the support group meeting that I took him too changed everything.  The day that we went there was a heart transplant survivor there talking.  And there is also a double lung transplant survivor in the group who talked some.  It was strange to finally go to a meeting and they were talking about organ transplants that day since that is not something they typically talk about.  But he told me that that day changed his perspective, because he realized that those people had gone through that and there they were, going on living their lives and it gave him hope and inspiration.  Since then he’s been very proactive… finding others to talk with about all this, getting out and doing things.  He’s doing amazing, which begs the question, wtf is wrong with me?

Oh yeah..the SAD thing.  And just generally being scared and anxious.  The closer we get to another specialists appointment, I think I find myself feeling more anxious because there is always that…what will they say, what will they want to do next, when will we get on to the transplant team and then my God…going through that whole process.  So much to take in.  And truly, I need so much more support than I currently have but I don’t really know where to find it.  There is our local Alpha 1 support group but they cease meetings during the winter months for the most part.  I have already decided that once we get on the transplant list that we will make the monthly trip down to the hospital’s transplant support group and hopefully find one around here as well.  I stopped going to my weekly meditation which was a horrible idea and I really must start up again.

The past couple of days I have sat in front of my blue therapy light.  Something I should have started clear back in October to prevent some of this but that fact that I’m doing it now is important.  I am going to pull my gratitude journal out from under the couch where it has been since this summer and remember things I am grateful for every day.  I am going to work up the motivation to go back to weekly meditation and quit preaching to Ki that he should do it and start doing it again every day and invite him to do it with me instead.  I am going to try to do more of the things that make me happy even if I have to start off myself by forcing myself to do them.  I don’t want to be sad or miserable and I don’t want to waste any moment with my husband because of my depression or my anxiety.

I think there are also things that I need to stop doing just to make myself a little happier, at least while we are facing this hurdle.  For example I care immensely about what is going on in this world but there have been times I have found myself just spiraling into a depression after spending too much time immersed in reading about things that I can’t directly control.  I’ll get so angry and so upset about the ugliness in the world and realize that while it is good to be informed, perhaps my time would be better spent focusing on things that are positive, people who are bringing about change, things I can do to make a positive impact… instead of seething at the ugliness.  It finally dawned on me that both sides seem to scream in their own ways “The world is a scary place and everybody wants to take something from you” and you know what the causes… it causes people to act out of fear instead of out of love and that’s really the biggest thing wrong in this world today.

Acting out of love is something I really want to do for the Alpha 1 community now.  The rest of my life will somehow be spent helping to spread awareness about Alpha 1 and helping people in whatever way I can.  I also want to find ways to help spread the word about the importance of being an organ donor.  These are things that you never think are going to directly impact your life and then when it does it makes you want to get out there and let the world know what is going on.  If this had to have entered our lives, it won’t be without meaning.

I also think some of my sadness… came from that new found information that the friend-actually more of an acquaintance-about to become a stranger is (still) an addict.  It hurts because in the past year, I really tried to confine in her some personal things about my life which I hadn’t done in a while and of course Ki’s illness, I shared with her about it and told her my feelings and just hoped she would have been there for me and then to find out while I was sharing all that with her… she was not anywhere close to still being the person I thought she was.  There was very much a feeling of betrayal.  But I’m moving past that now, I just realized that that part of my life, where I knew that person is now over and while it is sad that we go from friends to strangers, sometimes it is necessary.

I’m just going to try my best from here on out to be positive and do good things in life and help my husband get past all this and hopefully I find my spot in life too.  Someday this will be in our past and I don’t want it to take any thing else away from us.

I’ve also decided that for the rest of Holidailies, I’m going to attempt not to really dwell on this any more.  If I make anymore posts regarding the transplant or Alpha 1 it will be to share information.  If something comes up in our lives regarding all this, I will of course share, but I would really like to spend the rest of the holiday season trying to focus on positive things and enjoying this season.  I definitely owe that to myself and Ki.


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