Thursday, December 25, 2014

Surviving the Holidays with Mitochondrial Disease

As this Christmas day comes to an end, I decided to do something I haven't done in ages...  Write a blog post.

This is actually really surprising because of how exhausted I am.  However, I wanted to share with everyone what the holidays are like for someone who's chronically ill.  You always hear people saying how difficult this time of year is, how tiring it is, and of course how financially draining it is.  I have written many blog posts about how difficult, tiring, and financially draining chronic illness/mitochondrial disease is.  Now, add the holidays to all of that.

For you, stopping at a store on your way home from work or going shopping on a Saturday is no big deal.  For someone with a chronic illness such as mitochondrial disease, it has to be a planned out event with nothing else on the schedule for that day and most lie.

Think of the spoon theory for a moment.  (Don't remember or haven't read it? Click here to read it again)  On a normal day, every spoon is accounted for.  In fact, in my case, I am going into the negative by the time my husband gets home from work.  So, where does the energy come from to put up decorations, plan out a meal, wrap presents, go shopping, cook a large meal, make sugar cookies with the kids, take them shopping, attend family functions, fix food for said functions, etc., etc.???  Yeah, I don't know either.

So what do those with Mitochondrial disease do do?  We borrow spoons... from the next day and the day after that and the day after that.  Or, we reach deep into the spoon vault that houses the spoons we've saved up for just that special occasion.  Neither one of these solutions works very well.  If we have to borrow spoons, they have to be "paid back" on the day we borrowed them from and the interest is extremely high (i.e. massive body shut down, unable to get out of bed, pain, nausea, vomiting, muscle weakness, etc. etc.).  If we push through it and use what we keep stored for a special occasion, we won't have anything left for said special occasion.  Sooo... my kids have wrapped presents under the tree, but I won't be there to see them being opened because I'm too sick from getting them there.

Too many times people with chronic illness compare themselves to others and what they're doing during the holidays.  Then the guilt comes.  We can't do what everyone else is doing the rest of the year (play sports, exercise, work, clean the house, etc.).  So why would we magically be able to keep up with everyone else during the holidays?  STOP TRYING!!!

Take myself, for instance.  I always tell myself, "One holiday at a time."  That one I'm pretty good at holding myself to.  So there's Halloween, which we're very active in, Thanksgiving, my daughter's birthday in the end of Nov., and then Christmas.  This year, my daughter decided to have her party 2 weeks after her birthday in hopes that more people would be able to come since it wouldn't interfere with Thanksgiving.  So, we did the first 2 holidays followed by my daughter's birthday.  As it was her 16th, I was much more involved than I have been for a few years.  I wanted to make sure she had an awesome birthday because of everything she's been going through.  The birthday party came and went.  Then it was time to work on Chris t m  a  s    s   h     o      p       p ....  BAM!

Yep, that was me hitting a wall.  After many months of doing more than I knew my body could handle and a couple of weeks doing way more than my body could handle, I crashed... hard.  For about 2 weeks I was barely able to walk to the bathroom because I was so weak and felt so bad.  Christmas shopping was out of the question.  Yes, I'm fully aware of online shopping, but even that takes energy when you have to figure out what you can get, how much you can spend, how in the hell you're going to make that amount look like more than it is, what you're giving and what Santa is giving, etc.

After all of that, add in dealing my daughter's teachers who aren't cooperating with her 504 plan, taking care of her while she continues to have seizures even with 2 meds at max dose, a doctor telling me 2 1/2 weeks before Christmas that I have to pay a large portion of his bill or he'll stop putting pain meds in my intrathecal pump, continued family stress, and receiving some very bad news. (God, I wonder why I have been so sick!)  Needless to say, I was rushing around on Christmas Eve to finish shopping and getting things done.

As you can imagine, I wasn't able to enjoy the day today as much as I would have liked.

So...  if you're the family member of someone with a chronic illness like mitochondrial disease, please give them a break during the holidays.  Hell, give them a break all year.  Especially if they are taking care of a sick child too.

If you yourself has mito, POTS, gastroparesis, or any other chronic illness, be sure to follow a few simple rules during the holidays...

  1. Take care of yourself!!!  (Notice that that's number 1)
  2. Don't compare what you're doing with what someone healthy is doing.
  3. Along those same lines, don't worry about what ANYONE thinks. 
  4. Ask for help.  (This is a tough one for me)
  5. Plan ahead
  6. Start early!!!  (don't put yourself in the position I was in this year... start creating lists months ahead of time and pick stuff up here and there)

I hope you all had a great Christmas and had enough spoons to enjoy your day.

1 comment:

Rosemary said...

Going through my old Movement Disorder blog links, and so sad to see so many are no longer there.

Hoping you just decided not to use a spoon on posting, and not that you are no longer able to post.