Sunday, March 13, 2011

It finally hit

Well, I can't sleep, so I guess I'll blog.  And I guess I'll blog about why I can't sleep.

A few people were noticing how well I was taking my diagnosis.  My daughter was especially annoyed at how well I was taking it.  I was, in fact, happy that I finally got a diagnosis.  After a year and a half of searching, with doctors, family, and friends not believing me, no treatment options, and the constant feeling that I knew something was wrong but no one else did, I was ecstatic that I could finally put a name to my illness.  I was ready to make plans.  I was ready to start treatment.  I was ready to finally be able to say "I have mitochondrial disease" when people ask what's wrong with me, instead of giving them a long story about how I was diagnosed with POTS, but I know something else is wrong but have yet to find out what it is.

I had a feeling that the severity of my diagnosis, what it really means to have mitochondrial disease, would hit me at some point in time.  Well, last Thursday, it did.  I was taking my rest time and laying in bed with my eyes closed, listening to relaxing music.  I started thinking about how wonderful everyone has been recently.  How grateful I am for everyone's help recently.  And then, something happened that is typical for me, I started thinking how I am going to pay everyone back by helping them with things, when I get better.  Then it dawned on me.  I'm not going to get better.  This isn't an illness that goes away.  There is no cure and the treatment is minimal, if it works at all.  That would be when it hit me.  I started crying... and I didn't stop for 45 minutes.  Luckily I have a wonderful husband that I could talk to on the phone who helped calm me down and an even more wonderful mom who came over and kidnapped me to take me for ice cream (after a few long hugs and reassuring words).

Unfortunately, though, I have still been struggling a bit with my emotions.  Since then, I have had trouble sleeping.  Hence, this late night post (it's almost 1am btw).  I will explain what I mean by the "severity of my diagnosis."  In the seconds that it had finally hit me, this is what I was thinking...  I will never be an ER nurse again.  I LOVED my job.  I loved being a nurse.  I also like making my own money.  I have always been a very independent person.  I hate relying on other people.  And now, not only am I going to have to rely on other people financially (I count disability as "other people"), but physically as well.  I hate having to constantly ask everyone for help.  Now I'm going to have to do so for the rest of my life.  I had finally figured out what my passions were; running and hiking in the mountains (yes, I only did it once, but I was hooked immediately).  I will not be able to do those things anymore.  This is not how I planned my life.  I have too many things to do with my life to be sick.  I am too independent to have to rely on other people to help me with things all the time.

Yes, all of that went through my head in a few seconds. 

Now, I know what everyone is thinking and, therefore, wanting to say to me.  "Robin, you'll find other things you're passionate about. You'll find ways to adjust so you don't need help from others as much.  You'll get better one day.  These vitamins are going to help you.  We're your family, we don't mind helping you.  Etc. Etc. Etc."  I know, because I have heard all of these things.  I know that everyone has good intentions and just want to help.  I will be okay with it again soon.  But for right now, I am mourning the loss of the old me, my old life.  Hopefully it will be a quick process since I've kind of already gone through the grieving process over the last year.  I have had the symptoms of mito for awhile now, and therefore lost my old life awhile ago.  However, I have just now found out that it's never coming back.  So, give me some time.


Todd said...

Hey Robin,
I think you handled that very well, that first first bomb to drop is a tough one. The new normal, the new you, it comes with all chronic illnesses like this. You are correct that the treatments really don't offer much, but everytime I start to feel sorry for myself I think of the ALS patients I see at the MDA clinic and wonder if they'll be back for their next appointment. It can always be much, much worse, enjoy every minute you get to see your family.....even if it is from the couch :-)

One other quick point, have you had a sleep study yet? Alot of us mito and poties have sleep disturbances, mine happens to be alpha wave intrusion or alpha/delta distrubance. Ask at your next appointment.

OK go back to bed and get some sleep, hope you have much better day.......:-)

Bibliotekaren said...


I hear this is common -- the high of relief after a long sought after diagnosis and then the letdown of the reality.

I think that processing some grief about this is a good thing as long as it doesn't become a spiral downward. I find that for me, grief is a cyclical thing that ebbs and flows.

Not the same thing, but I'm sorting through my possessions little by little to prepare for a move this year as I need more assistance and no stairs. I've had over three years of progressive functional decline and have already accepted a lot. Yet it's quite real as I go through climbing, hiking, biking, and ski gear acquired over decades. Will I really never even go for little hikes again?

I'm so glad you have your family as you work through this to find your value in life. And, don't underestimate the value you can and will provide them, just in a different way than you had planned.

Take care,