This is not a very good time for me right now. I have always, pre and post mito, had problems with the "winter blues". About the end of Febuary and into March, right before it starts to get warm again, I get a little down. I am not a home body. Ha! Why is that funny? Because that's all I do now... hang out at home. But that's not what I want to do. I want to get out and enjoy the outdoors and fresh air. I am not, however, a cold weather person. I hate the cold. If it wasn't for my parents and grandparents, I would have left KC a looooooong time ago.
So, it's that time of year that I get a little down. No big deal, right? Wrong. I'm dealing with a lot of other stressors at the moment. A couple of weeks ago my grandpa, who is very special to me, fell and severely broke his hip. He spent a week in the hospital, during which time I worked with my Aunt and dad to find a nursing home/rehab facility for him to stay in when he was discharged from the hospital. He has always lived at home with his wonderful wife, my grandmother, of 65+ years. Due to all of his pre-existing health problems, things are not looking good for my grandfather.
Situations like this are always difficult on the family. This has been no exception. My grandparents have 2 kids, my aunt and my dad. There are not any other people in this world who could be any more different from each other in every way, shape and form. I thought my sisters and I were so very different. My dad and his sister couldn't have personalities any more different from each other. So who ends up being in the middle in situations like this? Me. Amazingly enough, I'm usually okay with it. If nothing else, I'm glad that I can help in some way. I feel that it is my job to "keep the peace" as it may be by being the middle man in a sense. However, it's not easy. I'm dealing with all of the stress of my grandfather being ill as well as being a sounding board for other family members and their problems. Again, I'm glad I can be there to help. I like to help. That doesn't mean it's easy.
Then there's my own problems with my own sibling. I'm not going to get into all of the details because it's between her and I and no one else. However, she evidently didn't feel that way. She assumed, without having a single clue, what I was/am upset about and made sure to inform other family members of that assumption, which then caused more undue stress between them and I.
Please, if you're having difficulties with a family member or friend, please don't involve others. There's no reason to. Talk it out with the person your having a problem with. Make a point to reach out to that person instead of assuming you know what they're upset about... especially if they're life is a living hell in the first place.
So, obviously, the family issues have caused me a lot of stress. Some of which I can avoid by not talking to the person I'm having difficulties with. Some of them, I can't.
On top of all of this, I have been really sick. My grandpa had a stomach virus (nausea, vomiting, diarrhea) which got passed to all of the people who've gone to see him and are close to him. I, however, have more difficulties with any virus because of my mitochondrial disease. I am now on day 5 and still sick. I am finally able to eat more than jello and pudding today. However, I am still very weak and in a lot of pain. I, of course, didn't get the diarrhea aspect of the virus. I wish! Well, I guess my version of diarrhea is 2 BMs in one day. Woo Hoo! My GI system's really moving now! I am so happy that the last time I was in the hospital my doctor increased my IV fluids to once a day. Plus, there have been days here and there that I was having such a good day that I didn't use my IV fluids. Therefore, I was able to use 2 liters of fluids each day while I was really sick. If it wasn't for those two things, I would've been in the hospital for this virus. It's much more comfortable to be sick at home. Granted, I don't have the caretakers I would have in the hospital, but, luckily, my husband hasn't gotten sick so I've at least had him.
The fun part is when other people try to compare. Nothing is ever the same with mito. Viruses are always 10 times worse. So saying you're weak from vomiting is nothing like the weakness felt with mito. When I vomit, I can't get off of the floor without someone practically picking me up. I can't stand at the sink to brush my teeth without my legs collapsing from underneath me. Imagine what happens when I vomit 6+ times in a 4 hour period. Then imagine what happens when I don't eat for 4 days.
This is a small quote/excerpt from a blog post titled "Pay no attention to the girl behind the smile - what I wish people knew about me" by Christine Miserandino on ButYouDontLookSick.com -
"I hate people who complain, “I need a nap”, “I need some caffeine, I have a headache”, “I have pms cramps”, or even better… “I have a cold… I am Ddddddyyyiing!”. These expressions need to be banned, because they do not adequately describe how you are feeling and they belittle what pain and sickness I may be feeling."
Last, but not least, I want to discuss a pet peeve of mine. People are constantly giving advice to those who are sick. Have you tried this? Have you cut out that? Have you drank this or eaten that? I read an article... I heard on tv... What's always fun is when people tell you the things you should and shouldn't do. I get this ALL the time.
Do you know who knows my body best? Do you know who knows what I should eat and drink, what medicines I should take, what energy I should expend, how much sleep I should get, etc. etc.? Not my doctors. Not my family. Not my friends. Nope. It's ME. I am the one who knows what I need. I am the one who gets to make the decisions as to how much sleep I need, when I should rest and when I shouldn't, what will make me sick and what won't.
The funny thing is that everyone else still continues to think that they know what's best for me. Actually, that's not the funny thing at all. This is the funny thing... When I am feeling well, I get advice from everyone about everything. When I'm feeling well, I'm out and about more often. I'm talking to family and friends. I'm even helping take care of others. That's exactly what I want to be doing when I'm feeling well. That's exactly why I am always quoting Amanda Perrrotta and saying, "the cure for mito is living life." That's why, whenever I can, I live my life. I rest when I need to, eat and drink when I need to, and take my medicine when I need to. However, that's also when everyone wants to tell me what I should and shouldn't be doing. BUT, when I'm sick for days on end, vomiting like crazy, in tears from the pain, and unable to walk without my husband holding me up, I don't hear from anyone (but my parents sometimes). That's the funny part! Everyone wants to tell me what I need to do so I'll feel better when I'm feeling better, but when I'm sick not only do people not tell me what I should or shouldn't be doing to feel better... they don't tell me anything, because I don't hear from them!
So, if you want to give me unsolicited, uneducated advice, why don't you give it to me when you're at my house helping my husband take care of me when I'm sick, instead of when I'm out and about trying to live my life the few times that I'm feeling well enough to do so. Otherwise, please keep in mind that I am the one who knows my body better than anyone else. The person who knows me well enough to give me advice no matter how I'm feeling is my husband, and that's because he's there for me during the good and the bad... not just the good.
Now that I've had my ranting and raving about how crappy things are right now, I'm done. I may not believe in god, but that doesn't mean I don't appreciate prayers and good thoughts. That's what prayers are to me... good thoughts. And who in this world can have too many people thinking good thoughts for them? So, please, help me out by thinking a few good thoughts for me that I will get physically better soon and that my stress will drastically decrease soon as well. Especially since those two things go hand in hand with each other a lot.
Oh, yeah... wish me luck for next week. It's Spring Break and my kids are at home with me all week.
1 comment:
You cannot know how appreciative and thankful In am for this post. I came across your blog while trying to learn more about mitochondrial diseases, and wound up getting this site as a wonderful gift.
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