Thursday, November 3, 2011

The Place I'm In

I am not in a good place right now.  I was just getting settled in to my new life.  I was just starting to figure out how to live my daily life with the way I always feel.  I was figuring out the fatigue, the pain, the weakness, the depression.

Is there something wrong with figuring things out?  There must be, because whenever I do, things change.  I know.  I know.  That's life.  But can't I have just a little bit of normalcy?  Even if it is just my own normalcy.

I had figured out how much sleep I needed every night, how much activity I could handle before I needed to rest, and how much rest I needed before I could have activity again.  I finally figured out the right pain meds and dosage, how to best deal with my pain, and what I needed to do to keep it tolerable.  I figured out what I needed to use to keep me from getting too weak or to get around when I am weak.  I finally figured out how to keep my depression at bay.

So right when I might actually get to enjoy life a little, my body decided it wasn't going to have that.  My GI problems have kicked me in the ass.  No pun intended.  I have been so nauseous.  I can't eat.  I can't drink.  I can't enjoy a good meal like I used to do when I was feeling bad.  Nope.  I can't, because my GI system decided to go on strike.

I've had enough of this shit.  Things could be worse, you say?  Yeah.. I know... I know.  I really don't want to hear it.

I finally went to the ER yesterday.  After being incapacitated from headache/migraine pain and nausea all day on Tuesday and then waking up feeling worse on Wednesday, I finally decided to do something about it.  I was so weak yesterday that I was barely able to get up and around to go to the bathroom.  I figured it was because I was so dehydrated.  I got 2 liters of IV fluids while in the ER.  It did help my headache.  It's still there, but I am able to function now.  (btw.. migraine meds did not touch it like they normally do.)  It did help my weakness and fatigue.  It's still there, and worse than normal, but better than it was Tues. and Wed.  I'm not getting around much without my wheelchair, even in the house.  Normally I will walk around a bit in the house throughout the day.  Problem is, in another week I'll be right back where I was.  I just can't drink or eat enough each day to keep my head above water.

You know, I knew Mitochondrial Disease was a progressive condition.  However, I guess I didn't think I was going to ever get worse.  I had come to terms with the fact that my life had changed drastically and I wouldn't be able to do the things I used to do, but I obviously didn't come to terms with the fact that I may still get worse as time went on.

Isn't what I was dealing with enough?  Do more symptoms/problems really have to arise?

In addition to the physical symptoms, I am feeling a bit down that I'm not really feeling the love from friends and some family.  I really need support right now and some people were blowing off my visit to the ER like it was a visit to walmart.  I wouldn't go to the ER unless I was really sick.  But I guess this is just my life and me going to the ER is like everyone else going to walmart.

Another thing... how is it that I feel so incredibly bad but all of my tests always come back normal?

You know.  All I really need is to feel better.  To be able to eat a freaking meal, or drink a few sips of water for that matter, without feeling like I'm going to lose it before I'm finished.

I'm so tired of feeling sick all the time.  I'm tired of acting like I don't.  I'm tired of fighting.  Sometimes I just want to give up.


Michelle Roger said...

Sorry things are so crap at the moment. Wish I had some words of wisdom, but all I can offer is a paltry "I hear you and know what you mean". Just because you know it's progressive it doesn't mean you fully get it till things start changing yet again. I've know for a couple of years mine was, but only had the official word in June this year. Yet it wasn't until I was hospitalised in Aug that it really hit me. I would say bollocks to those who tell you "it could be worse", or minimise what you are experiencing. They have no concept of what it's like to have this stuff day in and day out with little respite. Just because it's not the big C (that's the one I usually get) doesn't mean you aren't suffering, physically and emotionally. On our 'good' days we are sicker than most will ever experience. (hugs)

Rachel said...

I know what you mean about people thinking you going to the ER is just like going to Walmart. "Oh, she has another surgery? Cool." NOT COOL.

Robin said...

You two are wonderful. One of the many reasons why I post on here is because I know there are people out there who know exactly what I'm going through, even if it's no one I deal with on a daily basis. You both really helped a lot.

Michelle - thank you for always understanding. You seem to always say the right thing. I get stuff about "the big C" as well. If they don't say it, they imply it. And, as you said, we are sicker than most will ever experience.

Mighty Mito Mom said...

The hardest thing about all of this is dealing with other people NOT GETTING IT!! Hugs!!