Thought for the Day:

Hope is the thing with feathers
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.

- Emily Dickinson

Monday, December 18, 2017

Christmas Blues

Christmas is hard time for lots of people, myself included.

For me, it's a reminder how alone I am in the world.  I have very very few friends here partly due to my health and having to remain mostly homebound. I have my dad and love him, although most the time I feel like the love is a perpetual one way street.  It's a similar situation with two of my brothers who live across the province - I can love them, but due to their disabilities, they don't really seem to have the ability to 'love' anyone in return.  And as most of you know, I really haven't dated at all since becoming ill in my early 30s, so there is no partner in my life, and no children, and likely there never will be.

Also, in the last two years I lost my mom and my closest Aunt (in August). I realise it's completely selfish, but sometimes I feel like these two women were the only people left in the world who really loved me.  On the one hand, this makes me realise how lucky I was. On the other hand, sometimes since they died I feel adrift in the world, like without their maternal love I've lost my anchor - yes, even at my age.

Back to the holidays, given it's a time when people get together with friends and family, it makes me feel my lack thereof. While my father appreciates some celebrating I would have to make it all happen myself as he is unable (whether that's cooking, decorating, gifts, whatever). Then there's the fact I'm ill/weak/colossally fatigued not to mention there is no one here outside of my dad to celebrate with.  My roommate is not very keen on the festive aspects of holidays, works a lot this time of year, and I don't want to force my dad on her.

My energy is pretty low right now and the POTs is bad (I am having a really hard time tolerating standing) - I just don't have it in me to make much happen on my own. That said, I love some of these things, they are worth the crash - cooking, baking, decorating, lights, etc. but it feels pointless to do them when there's no one to do them for but me.

Can you tell I feel blue?  I was watching Simpson's the other night and they were making fun of people who read a certain series of popular children's books (which I do) and I think the line was "adults whose lives are lonely and pathetic". Sums me up to a T. Hopefully my black mood doesn't ruin the holidays for anyone around me (e.g. the dog) - I guess that's one good thing about being alone a lot.

5 comments:

  1. It is a hard time of year for many people, in every aspect of life. Know there are others out there in the darkness with you, making our way the best we can. Keep on swimming. TC

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  2. Oh, I'm so sorry you are feeling so blue this season. I can;t imagine how difficult that must be, to be so isolated especially at this time of the year (though, honestly, it is sounding good to me right now! ha ha)

    How did your Christmas end up? Did you and your Dad have a nice day together? There were many years when I was unable to bake or even cook more than 10 min or so. Treating OI is what got me literally back on my feet! Since you now have a positive OI diagnosis, will you be trying some treatments?

    Hope your holidays ended up OK - thinking of you!

    Sue

    Living with ME/CFS

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  3. Hi Upnorth, Thank you for the holiday card. So beautiful, touching, hopeful and inspiring. You thought it was "Okay," but I think it's an artistic gem. ------ Oh no, another doctor advised exercise, you'd think that by now MD's would know at least a little about ME
    symptoms, it's so discouraging. My prim care has thankfully given up on the gym advise after wanting me to try light exercise in a pool. I told her that even if I could do the exercise without a crash I can't possibly handle two more changes in and out of street clothes into a bathing suit without paying for it. I guess she gave up after that. --------- You have to give yourself a pat on the back for having taught another course, and along with supporting you father, amazing. Sure hope we have a good year ahead. Meanwhile can you recommend any good books. I've been reading new and rereading Elena Ferrante, Patrick Modiano, Patti Smith (Just Kids and the more recent M Train) and just finished the bio of Elon Musk. Hmmm, we need someone like him in medicine. --from Leah
    ------

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    1. Leah,
      I actually tried the 'swim' thing last year again. I went once and didn't crash but after the second time I crashed hard. It's the fact one has to get to the pool (outing) get changed 2x like you say, and even all that can cause a crash in moderates like us. That said, I think about swimming all the time because I love it and miss it and for a POTs person it's a really good form of exercise.

      As for books, This year my favourites were "The Illegal" by Lawrence Hill, "my Grandmother told me to tell you she's sorry" by Baukman, and "Salt to Sea" by Sepetys - I also read "Toss of a Lemon" which was excellent.

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  4. For the record, guys just kinda suck at this stuff. Even with 'normal' health, the boyfriends/husbands/significant others are blissfully oblivious to the importance of maintaining relationships and the impact on the future...hopefully you are doing better now! I'm glad you have cultivated a relationship with your father. Being a woman, I'm convinced that they are truly at a disadvantage (a recent NYT article discussed how maternal grandparents are more involved due to stronger mother-grandparent relationships) but perhaps the time you have to get to know him is a gift. However exasperating it is :)

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