Tuesday, January 29, 2013

The Week from Hell

Last week was the week from hell.  My oldest daughter has been sick with the flu.  I don't mean "flu" like most people say when someone is sick with a cold.  I mean influenza.  There's a big difference.

Last week was definitely a test of my mighty mito mom abilities.  It's interesting too, since I just posted about how difficult it is to take care of my kids while I'm sick myself.

Two weeks ago I had a very busy week with going to my daughter's school for lunch for her half birthday, two doctors appointments 2 days in a row, a get together at my house (game night!... a lot of fun and I don't have to go anywhere.), and serving dinner to the homeless on Sunday night.  Holy cow!  However, I had a full week to recover because there was nothing on my schedule last week (the week after all of the above named activities).  Well, that didn't work out so well.  Sunday night, while serving dinner to the homeless (that I made, btw), my dearest daughter started to feel cruddy.  By Monday morning she was full fledged sick.  With it being Martin Luther King Jr. Day, my youngest was home as well.  So that's how my week started.

Mon, Tues, and the first 3/4 of the day on Wed. I was on my own taking care of my sick daughter.  There's a lot to do to take care of someone who's sick.  I was up and down and up and down all day.  By Tuesday, I was in a mito crash myself.  I couldn't say much since I still had to take care of my daughter.  So I pushed through it.  However, as all of you mito people out there know, pushing through a mito crash, or any activity whatsoever, can be detrimental to my health.  Soooo... sure enough, as the week went on, I became more sick.

It was a typical mito crash.  I only vomited once but I felt like I needed to 24 hours of the day, most of the days of the week.  I didn't eat anything one of the days and two of the days I probably only had a total of 10-15 bites of toast, ice cream, or jello... total, not 10-15 of each.  I had a killer headache, of course, and my temperature regulation was way out of whack.  For much of the time I was cold but drenched in sweat.  So I would lay under my blanket sweating.  Taking it off, pulling it on, taking it off, pulling it on.  Well, you get the gist.  This was all going on while I was also getting up and down to take care of my sick daughter.

I kept myself together for my daughter almost all week.  I broke down a couple of times but never in front of her.  I didn't fully break down crying and saying I couldn't do it anymore until Friday.  That's when I finally asked my husband to come home from work.  I hadn't asked him all week, no matter how much I needed help.

I got a little bit of help from my dad and step-mom.  They will practically drop everything if they know I need help.  They also risked getting the flu because they knew how much I needed them to be here.  I am always so appreciative of them and happy that they are there for me.  One of them came over in the afternoons on Wed, Thurs, and Fri.

I still could've used more help.  But it is what it is.  My husband and I don't ask people anymore.  If someone wants to help, they'll offer. (And there's one or two people who may offer but we still won't take them up on it because of their history of saying they're going to help and then not end up doing it.) We decided a few months ago that it's not worth it to try to ask.  We always seemed to get let down more than we received help.  All it did was show us how everyone's just too busy these days or don't care enough to help out. (except my parents)  It just seemed to cause more stress than it's worth.

Then again, people have to know what's going on in my life to know that I need help first.  And if they're not on facebook, they won't.  People don't call on a regular basis to find out how things are going, if I'm really sick right now, and/or if we need help.  Usually, if I need someone to come take care of me, or, in this case, my daughter and I both, I'm too sick to even talk on the phone.  That's just if someone happens to call me.  I definitely don't have the energy or don't feel well enough to call around to arrange for someone to help.  Which is another reason why we don't call around... I can't.  My husband can't take an hour out of his day to call a bunch of different people to arrange help.

So far, this week has been MUCH better.  Then again, aside from being sick enough to be in the hospital, it couldn't have gotten much worse.  Okay, well, it could've gotten a lot worse I suppose, but it definitely sucked... ROYALLY!  So, thank goodness it's over!


A lot of my posts recently have either been updates or bitching about this, that, or the other.  Of course, that's what most of my posts are.. bitching.  But, then again, this blog is all about living life with Mitochondrial Disease.  Well, it's no cake walk!  In fact, most of the time it just plain sucks!  I have moved on, though.  I'm not dwelling on the loss of my "life", all of the things I can't do now that I'm sick, and how shitty my life will be from now on.  I now concentrate on the things I can do and make sure I do them.  I concentrate on Amada Perrotta's quote, "The cure for mito is living life."

It may not seem like it to you all, but I am in a much better place.  The problem is that the purpose of this blog is to discuss how my life is affected by mito.  Well, MITO SUCKS!!!!  Therefore, anything affected by mito SUCKS!  So please keep reading.  It's not always going to be a bitch fest.  I do have a few things in mind that I'll be posting about in the upcoming days and weeks that are not negative.  I know... it's amazing!  Me... talking about something positive!  Wow!  ;-)

Besides... one of the many reasons why I post on this blog is so that other people who're going through the same thing I am can say, "Finally!!!  Someone who understands what I'm dealing with and going through!"  There's just not enough of us (mito and POTS patients that is) to have a support group in each city.  So the internet is how we find each other.  And I know from personal experience how awesome it is to find out that you're not alone.... that there is at least one other person in this world who is going through exactly what you are... that you're not crazy when you think this thought or that thought.

So, it may seem like all I'm doing is bitching all the time and that I'm miserable in my life.  However, that's far from the truth.  Just remember that there are people out there who appreciate my "bitching".

Don't forget... keep reading, because the next few posts are going to be a lot more positive.  (at least that's the plan)

Thursday, January 17, 2013

Being a Mighty Mito Mom

Sometimes the hardest part of this disease is just what the title of my blog says, being a "mighty mito mom".  I very rarely feel mighty.  Hell, many times I don't even feel like much of a mom.

Being sick all the time is so difficult, as you may have already gathered from reading a multitude of other posts that discuss exactly that.  Just taking care of myself when I'm sick feels like climbing Mount Everest.  Then there's dealing with medications and doctors and caretakers and tests and, well, you get the point.  It's not easy.  Then, of course, there's the emotional side of it all.  There's the depression and sadness... the guilt... the anger.

Among dealing with all of this with my own life, I still have to take care of two other people in this world.  In fact, I have the weight of their entire world on my shoulders to deal with.  That's what it means to be a mom.  To be a mom, you have the responsibility of making sure you create strong, kind, responsible, non-selfish, smart,  honest, moral, self-confident, and happy people.  Their lives are almost completely in your hands.  As a mom, you are creating people.  We are, essentially, acting as the being many people call god.  No, I'm not calling myself god... take it easy.  I'm calling all moms gods. ;-) That's a lot of weight on a woman's shoulders!

Now, make that same woman someone who can barely care for herself.  That's me.

This is something I have been dealing with since I got sick.  However, as I have been more sick recently (or sick more often), it has been more difficult.  The hardest part is that I am unable to be the mom I really want to be.  There are certain rules that I want to enforce more, things I want to do with them more often (or at all), activities I want to participate in with them, and things I want to teach them.  All of which is a daily struggle.  Some days, of course, are more difficult than others.  When I am really sick and unable to get out of bed, I am not able to do anything with them.  Many times I am too sick to even enforce some of the rules.

I am lucky, in that I had 10+ years with my oldest daughter prior to getting sick to enforce the rules and teach my morals and standards.  At 14 she is a very intelligent, caring, and well behaved young lady. (Shhh... don't tell her I said that, because then she'll forget the part about also having a major attitude.)  I had plenty of years to give her my fullest attention, positive and negative.

My younger daughter, who is now 6 1/2, on the other hand, I worry about.  I am not able to be the parent I truly feel I need to be.  Therefore, I constantly worry about who she will grow up to be.  I have already had concerns recently about fits of anger that she displays on a regular basis.  If I was a better parent, would she act this way?  What will she be like as a teenager.. as an adult?  Are we causing her emotional problems because too much attention comes my way instead of hers?

It is so difficult to raise 2 daughters when struggling to take care of myself.  I feel guilty regularly for waving them off when I am too sick to do anything for them.  How am I supposed to raise two beautiful girls into two smart, honest, strong, kind, and responsible women if I can't even take care of myself on a day to day basis?

Mom... yes.  Mito mom... yes (unfortunately).  Mighty Mito Mom... not so much.
Maybe I need to eat some of this and it will solve all of my
mom problems.  Ha!