Thursday, March 29, 2012

Crashes and Supply and Demand

Last week I had what I call a "mito crash".  A mito crash is when my body has been stressed so much that my mitochondria could no longer keep up with the energy demands.  It's much like supply and demand economics.  When there is a demand for energy due to activity or stress, my mitochondria supplies it.  However, a large portion of the mitochondria in my body do not work well and, therefore, do not produce energy.  So when the energy supply gets low and is, therefore, not as readily available, I have to pay for it.  My "currency" is a headache, nausea, muscle pain, weakness, fatigue, etc. (read the full list here).  In order to keep from having to use the "currency", I try to keep the demand at a reasonable level so that the supply and demand stay about the same.  However, that's not always possible.
Replace "Lemonade" with "Energy" and this cartoon is perfect.

When the demand continues to increase and the supply stays the same (the only way the supply increases is if I put some energy in the "bank" by laying flat and doing very little and/or sleeping), the price I have to pay for that supply goes way up.  That's when I have a "mito crash".  The supply gets so low it's actually on back order.  So when the energy supply is in the negative (on back order), my body shuts down.

When this occurs, a number of things happen.  I get a horrible headache.  If you've ever had a really bad migraine, it's like that.  However, my migraine medicine won't get rid of it in 30-45 minutes like it does when I have a migraine.  In addition to the headache, my muscle pain in different areas of my body increases.  The headache, in fact, is usually caused by muscle pain.  The muscles in the shoulders, neck and scalp can be in pain which then causes a generalized headache.  The muscle pain is caused by a lack of ATP (the energy produced by mitochondria) in the muscles during activity/exercise.  The lack of energy in the muscles when it's needed can cause a build up of lactic acid and/or breakdown of muscle tissue which then causes pain.

During a mito crash, my GI system shuts down due to the lack of energy.  The body is actually such a fascinating thing.  Our bodies automatically protect the more important organs during a time of crisis.  That's why a person stranded out in the cold develops frost bite in his/her extremities; because the body automatically shunts blood away from the extremities and into the important organs like the brain, heart and lungs.  When my body is in a negative energy situation, my GI system does not work very well.  That is why I have nausea and vomiting.  My stomach is not moving.  Therefore, if the contents can not go down, they must come back up again.

Muscle weakness and fatigue are the obvious ones.  Without energy, my muscles don't work very well.  Any time they are required to work (walking to the bathroom for instance), my body starts screaming at me again saying "I DON'T HAVE ANY ENERGY SO QUIT TRYING TO USE SOME!!!"  Which is why, during a mito crash, I don't move.  If I do, I get more sick.  Sitting up or standing requires energy, especially for someone with dysautonomia who's body can't handle those things very well even on a good day.  So, I don't sit up and I only stand when absolutely necessary (i.e. bathroom breaks).  This last mito crash I even waited (despite knowing it's not good for me) as long as humanly possible to get up to go to the bathroom.

My mito crashes usually last 2 to 4 days.  Two days are, obviously, much easier for me to deal with than 4.  During that time, I eat very little, if anything, drink very little (thank goodness for IV fluids), and don't get out of bed except for bathroom breaks.  This last one was the worse one I've been through.  Since it was lasting so long, I just couldn't wait until I was better to take a shower.  So, for the first time, I had to have my husband help me shower.  That was hard (mentally).  At age 33 after only being married for 7 years, I wouldn't think my husband would be standing outside the shower washing my hair for me.  I won't elaborate on what I think should be happening in the shower instead.  You can use your own imagination.  (oh geez... not that.. you're dirtier than I am!)

I do try to avoid mito crashes as much as I can.  Obviously I don't want to feel that way, but I can't always avoid them, as I have learned.

I started this post with the intention of discussing some insight I gained from this most recent trip (or should I say crash) into mito world.  However, as always, I let my heart guide my fingers.  So what I originally intended to talk about is not always what ends up posted.  Therefore, I will have to leave you hanging.  My next post will be about my deep thoughts and the things I would like to change.

As always, I push for awareness of both dysautonomia/POTS and Mitochondrial Disease.  I hope this will help some people out there learn a little more about both diseases.

3 comments:

Mighty Mito Mom said...

Thanks so much for sharing this! I know all too well exactly what this feels like. I really appreciate you helping raise awareness.

Karen said...

Thank you so much for this post. I am a 48 y/o female working as an ER nurse practitioner until 2 months ago. I developed significant muscle weakness and neurological issues fairly quickly but probably have just ignored early signs. The doctor suspects mitochondrial disease and I'm scheduled for a muscle biopsy next week. I have many of the same symptoms Anne suffered extreme weakness yesterday which I now realize was a "crash". Mentally this is very difficult for me and I'm not sure how to prevent it. I have 2 children 19 and 14. My 14 y/o daughter was diagnosed with mitochondrial myopathy when she was 9 and has learned to cope with it fairly well. She still attends school and manages A's despite missing several days for what I realize are crashes now. How do you prevent these events and is there any other options besides sleeping that makes you feel better faster? I'm still trying to come to grips with the fact that I will no longer be able to work and live my usual active lifestyle. I would appreciate any advice that you have.

Robin said...

Karen,

I'm so sorry to hear that you're going through that. I wish I would've connected with you earlier. Muscle biopsies are no longer the industry standard when testing for mito. Mito specialists are now using dna tests alone. I can definitely relate to the mental aspect and effects of this disease. It's still (after 6+ years) a fight everyday to keep from getting down.

Preventing a mito crash just comes with practice unfortunately. You learn over time how far you can push yourself before you overdo it and crash. Sometimes there's nothing you can do to prevent it... illness, menstruation, etc. I would love to chat with you further. We seem to have a lot in common. You can email me (via my blogger profile) or friend me on facebook (link on the left side of my blog).