Tuesday, September 21, 2010

Me and My Flaws - A note from Facebook on Sept. 10

I'm literally so tired. Tired of this stupid disease and how that no one can see what it does to me with the exception of the blackout moments. They don't see how tired I get from bathing, fixing my hair, vacuuming a floor. It's funny how people can find time to be understanding, but only when you're blacked out on some bathroom floor or something. I am tired of painting on a smile, pretending that the meds I take are making a HUGE difference, when in truth all they have done is allow me to sporadically feel a little better. People say, oh your doing so much better, you haven't blacked out in a few weeks. But blacking out is only part of my illness. It's the everyday crappy constant fatigue, nausea, headaches, stomach problems, and the horrible cloudiness of thought that makes things so very bad. I think I would rather have blackouts/seizure episodes every few weeks instead of the horrible everyday stuff that's not visible on the outside to the world. That way on those days people understand why you may not be at the top of your game. But on the days when this stupid disease is not visible to them, and you never seem to be able to do anything right, they just don't understand. I admit, I'm not the greatest housekeeper. But at least before the stupid disease took over I was better at it. There was a time when my house was clean all day. I'd wake up, vacuum dust and put on the laundry all before the girls would be awake. Then they would wake up, I'd have their breakfast ready, and while they ate I did their beds and their room. After they ate I swept and mopped. I did this after their lunch and their supper and then again just before bed. And they had cooked meals. Huge meals because I loved to cook for my family. But no one ever came to visit me when I was able to do all this. No one ever saw the potential I had then as a mom, wife, and housekeeper. No one ever visits to see you when everything is going great. And then you get sick, but perhaps you haven't told anyone just how sick you've been feeling until it's at a critical point. So they all come over to help you and finally see your home. But at this point it's a huge mess. You're barely able to do anything without crippling fatigue and pain, but this is the moment they see your home. And everything from there on is judged on this one time they came to your home. This angers me so badly. But more than that it hurts deeply.  I'm the person who is great at everything that isn't deemed a priority in life. I'm good with computers, fixing things, etc. But I'm apparently a bad mother/wife because I literally am not able to do like all the other moms.... lead a perfect life, with a perfectly clean house... heck I have trouble with a straight house.  Do you know how hard it is to have a 6 and 2 year old and not have the energy to keep after them? OF course not... because you don't walk in my shoes. Your kids make a mess and you are able to zip around behind them, picking up. Bending over time and time again to pick things up and run a vacuum and sweep and mop after them.  I bend over and before I make it back up my head is already cloudy, my vision is weakening, and by the time I make it back upright I'm nearly to the point of passing out. I vacuum a room and my arms turn purple and painful and throb and ache. I vacuum 2 rooms and my stomach begins to turn purple as well as my legs. It's like tying a cord around your arm and hanging it down so that all the blood flows down and then tighten the cord and let the pressure build and build. That's what it is like to have blood pooling.  I could go on and on about the issues I deal with trying to lead a normal life with a body that is everything but normal. But the point is, just these 2 problems would put you so far behind in your daily routine that you would be in tears because of your inability to do normal things. Now tack on about 15 other things or more that go wrong.... heart rate racing, blood pressure dropping, constant thirst, and on and on, and then tell me you would be better at normal everyday things than I am. I doubt it. You would suck at it all too. I'm just saying, it hurts so bad to be judged by the way you look on the outside. Today I've felt like a failure. I've just wanted everything to end. And yes that means what you think it means. I'm not perfect. I do crumble and fall into deep pits of despair and sadness. I hurt and I yearn for a normal body to lead a normal life. I really would love to be as good as the rest of the world in the everyday mothering things. But the point is, until you've walked in my shoes, and lived my life...  then just remember your words and actions could be what breaks me. You could be the reason I no longer desire to fight. I guess that's all for today. I'm tired, my heart is heavy, and I just need to get away.


Anonymous said...

I have dysautonomia too! I have been dealing with it since Dec 2008. I have heart racing and pounding, multiple pvcs, my Blood pressure goes sky high though 180/120s and I get so dizzy and faint. I am on lopressor, xanax, fish oil, B12 complex, and just started zoloft because ssris are supposed to help symptoms. I was on short term disability from my job jan-march 2010. Please email me if you want to talk. I am at a loss myself. I try to fight but Im tired. Sherri.koteski@comcast.net

Alice said...

I am sorry... I can't even begin to imagine what living with that disease but I have seen God do wonderful things and heal me and my loved ones. I don't know why I stumbled upon your page but I am going to do a prayer right now, knowing that God can heal you.

Lord God, I come before you recognizing that you are all powerful that you mercy endures for ever and that you are our healer like it says in Exodus 15:16 "for I am the LORD that healeth thee," Lord I declare this word over the body and life of Miranda, may you heal her. Isaiah 53:5 says "But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed." Father God there are endless examples of when you healed in the Bible but I am asking you by your wonderful mercy that you would heal Miranda in the Name of Jesus. Amen.

Can't wait to hear your testimony! There are moments, situations, and processes that we go through that we don't understand at the time, but in all of those things God wants us to depend on him. God bless and keep you and your family.