Friday, July 29, 2011

Running away

Sometimes I just want to run away from home.  I just get to the point sometimes where I just want to get in my car and start driving and not stop until I have to.
I have been so close to doing so.  I just wish I could be spontaneous.  I SO need a vacation.  I was laying in bed late one night surfing the web and came across some information about cheap travel.  I got stuck.  I almost bought a vacation package.
However, I think being spontaneous and going somewhere fun at the last minute is what I need.  You know, sometimes I wish I could live like I only have 6 months left.  I am too damn responsible to do anything spontaneous.  I have to evaluate and re-evaluate everything, especially when it comes to spending money.
Damn responsibilities.  I wish they would just go the fuck away.

Monday, July 11, 2011

Giving up

Sometimes I just want to give up.  I hate being such a burden to people.  I feel so damn useless at times.  I still haven't figured out how I'm going to transport my new electric wheelchair places.  So, I am still relying on others to take me anywhere I have to go.

I have a class at a pain clinic on Wednesdays that I'm supposed to start this week.  It's a 30 minute drive.  I can't drive that far.  It just wears me out too much.  Well, I can drive that far, if that's all I have to do.  But then I have to walk into the building, go up the elevator, walk down a long hall, sit in an hour long class, and do it all over again in order to get back home.  I can't use my manual chair because I wouldn't be able to get it in and out of my car.  Besides, wheeling myself is just as tiring and difficult as walking.

So every time I have to go to a doctor's appointment or something else that is not a short trip (like dropping my daughter off at a friends house or soccer practice), I have to have someone help me.  I hate that.  I used to be such an independent person.  Now I have almost zero independence.

In addition to that, I feel like a burden to others.  No one would admit to it, of course.  But that's how I feel.

I want my 12 y/o to live the normal life of a 12 y/o.  She is always taking care of me.  She has definitely had to grow up a lot quicker over the last couple of years.  That's not such a bad thing.  However, she has to take care of her little sister and do a lot more chores than she would have to do if I wasn't so sick.

It tears me up inside that my illness is affecting everyone else's lives so much, especially my daughters.

Wednesday, July 6, 2011


As I stated in my last post, I've had a setback.  As much as I have to say (don't I always), I won't be able to type for very long at all.  My setback has seemed larger than life today.  Yesterday and today I have had zero energy.  I think I can actually say that I have been more weak and tired the last two days than I ever have.  Of course, with that, comes increased pain as well.  Today, I hoped in my electric wheelchair and went in the kitchen to make breakfast.  I was so happy my 12 year-old daughter was here because I couldn't finish.  My arms were so weak/fatigued that I felt like I could barely hold them up.

I have only moved from my bed to go to the bathroom, fix my meals, and to sit in my recliner for about an hour today and yesterday.  I have also been sleeping a lot more than normal.  I have gone to bed around 8 or 9pm twice in the last few days.  I never go to bed earlier than 10pm, and usually it's almost midnight.  In addition to that, I have been taking at least one nap, sometimes 2 or 3 small ones.  I am the type of person who never falls asleep while watching a movie, especially not at the movie theaters.  When I went on a date with my husband last Sunday night, I was struggling so hard to keep from falling asleep.  We were even watching The Green Lantern.  It's not like that's a slow or boring movie.

I knew yesterday morning that I needed a couple of "me" days.  I decided that for at least 2 days (now I'm thinking it's going to be 3 or 4), I was going to take a break from almost everything.  I have not answered the phone, except for my husband (gotta love caller i.d.!).  I have not hesitated to say "no" to my girls when they, primarily my oldest daughter, have asked to go somewhere or do something with me.  I have not kept busy with research online, which I do on a daily basis, or making phone calls, or any of the other things I do a lot of while sitting up.

My problem is that I still, at the end of day two, don't feel any better.  I am really struggling right now to type this post.  I really hope this doesn't last much longer.  I hope this is just a setback and not my mito getting worse.  It scares me whenever I feel a lot worse.  I'm so worried that it's a permanent change.

Tuesday, July 5, 2011

Adjusting to My "New Normal"

I always have intentions of posting daily or, at bare minimum, every couple of days.  Well, you can plainly see how that's working out for me.  Everyday my mind is racing (my body slowed down, but sure as hell not my brain).  I think of things to write about daily.  I even plan out posts in my head so I know what I'm going to discuss when I sit down to blog.  However, when I finally get to the point that I am not trying to do something else, I end up being too tired to both type and think.  That's a huge task, after all.  I used to be able to walk and chew gum, but, alas, I do not multi-task anymore.  Therefore, it takes a lot out of me to type and think, and even try to be funny and/or find pictures for my post at times.  So, instead of getting a daily, or every other day, post, you get a weekly or every other week post that is like reading "War and Peace".

Since getting home from the UMDF symposium, I have been trying to adjust to my "new normal".  Going through this huge change in my life has caused me to go through the stages of grief.  I have had to grieve my old life in order to accept my new one.  I started the stages of grief long before I knew I had mitochondrial disease.  After all, my life changed so dramatically long before my diagnosis.  I have been through denial, especially in the beginning (obviously).  I have been through anger.  Of course, those of you who know me know that that's not much of a stretch from my everyday personality. (I've been called the "B" word a time or two I'm sure.)  Since I don't believe in a higher power, I didn't really go through bargaining.  There isn't anyone for me to bargain with.  Plus, I am such a realist.  I definitely went through the stage of depression.  That one was a big one.  I had a period for awhile that I was crying 10 times a day.  I was grieving the loss of my job, my friends (or those who I thought were my friends), my ability to run, cook, clean, take care of my kids, etc. etc.  Overall, I was grieving the loss of my "life".  During that time, my view was that this is not "life".

So, I'm sure you all know that the next stage is acceptance.  I'm there.  Well, I'm working on it.  I'm definitely getting there more and more each day.  I have accepted that this is not going away.  I have accepted that I'm not going to be able to be a nurse again.  I may, possibly, be able to work again someday, but definitely not as an ER nurse (or any patient care form or nursing for that matter).

My acceptance has led me to try to make changes in my life to make room for Mrs. Mito in the land of Mitovia.  I have finally gotten my electric wheelchair.  My husband and I are trying to figure out the most cost effective way of transporting it around, without, of course, resorting to a minivan.  We all know I would never resort to that.  I'd rather be stuck in my house!  I am also looking into getting help around the house after my oldest daughter goes back to school in August.  She is such a huge help.  I am very grateful for her.  I have also resorted to paying for things that we wouldn't have paid for in the past.  Now that our money situation is under control, we are able to do so.  We are paying someone to mow the yard (My husband would never have done that before... "why would I do that when I can do it myself?" he would say).  I am also going to start ordering our groceries online.  It only costs an extra $10.  The grocery store then gets all of them ready for you and you just have to pick them up.  I think that's worth saving an hour and a half of my husband's time.  Whatever I can do to make our lives easier in the land of Mitovia.

However, all adjustments are hard, and take time.  With my attempts at trying to get back to "normal", there have been some setbacks. Since I don't want my "normal" to be laying in bed 24/7 playing games on Facebook, I have been trying to do more things.  I have been trying to play with my girls more, go on dates with my husband (we actually went on a date a couple of nights ago for the first time in probably 2 years!), have friends over, and actually do something productive with my time (organizing a 5K to raise money for UMDF... more on that later).  As you can guess, since all my readers are VERY smart like me, all of those things require energy.  At least, more energy than Farmville (even though seeding and plowing gets very tiring at times).  I have, therefore, felt a lot worse in the last few weeks.  I'm hoping it's just because my activity level has been increased in the last couple of weeks.  Everyone help me out by crossing your fingers, toes, and any other appendages you have.

I am taking the next couple of days off.  Meaning, I am in bed today and tomorrow doing nothing but mindless Facebook games, blogging, watching TV, reading, and taking frequent naps.  The other "setback" has been my mood, feelings, whatever you want to call it.  I have been wanting to get back to "normal" a little too much.  Therefore, I've had a few crying spells when I have realized that I can't do what I want to or that I have to ask my husband to do things for me even when he's already tired and worked to the bone.  I think I've also had trouble recently with missing being around my friends.  I'm such a social butterfly... okay, not a butterfly; maybe a social moth, but I'm home by myself or with my 12 year old daughter so much.  I really miss just sitting and chatting with co-workers/friends at work, or the other moms at soccer games, or even the cashier at the freaking grocery store.  I need to be around people more often.  So, if you aren't one of my readers who lives in Australia, come over anytime.  I love, love, love visitors.  I'm sorry that I can't come to everyone else's houses more often, but just the drive there and home would wear me out to the point that I wouldn't be able to actually visit very long.

One other thing that I forgot to point out that has made me tired is that the hubs and girls went out of town for 4 days a week ago.  That was challenging.  That was the first time I've had to take care of myself for that long since I got sick.  I thought, "Oh, I'll be fine. It's not like I'm taking care of my daughters, too, or anything."  Well, lucky for me, my mom wasn't thinking the same thing.  She was worried about me being home by myself for 4 days.  Gotta love moms.  They're such worry warts!  Sometimes that comes in handy.  Like last weekend.  She went out of town for 2 of those days also, but she came over the first day my fam was out of town and brought me some food and made sure I was set for the next few days. She also called my sister to tell her to "check" on me.  My cousin, and bestest friend, came over the 2nd day for awhile.  Then my sister came over the 3rd day for a few minutes just to do a couple of things that were no big deal for her, but a huge thing for me (i.e. taking out the trash and putting in a load of laundry).  So, I guess I'm glad, in this situation that a few people didn't have as much confidence in my ability to take care of myself for 4 days as I did.  Because, even with their help, I was beyond exhausted by the time my family got home.

Okay, this is the end of this bi-weekly installment of "War and Peace".  Please come back again in 2 weeks for my next 10 page update on my life.  :o)  Sorry, no pictures this time.  I'm too tired after typing all of this.

If any of you Mitovians, Potsies, or anyone else living with a chronic illness have any other recommendations for me to help me live my everyday life the best I can, let's hear it!  I love hearing suggestions, especially from some of you more "experienced" chronically ill peeps.  Thanks!

Much Love!