When I read this this morning it hit me hard. Rich just told me the other night as I was talking about certain people that they just don't understand. They have no idea what you/we live with. My answer? I know but they have never even tried to understand. They never ask how are you doing. The people who shy away from illness are very curious to me. I go around in circles in my mind trying to figure them out and I can't. I also find it curious that when they have something happen to them we are the first to be told. Odd to say the least. I have to give it up, the trying to understand. It is never going to happen no matter how many times I go round and round in my head about it. When I am doing good I don't go round and round as much as when I don't feel well. The past couple of days have been brutal. Hard to even move my body. Forcing myself to do what must be done because life doesn't care if you don't feel good. Laundry doesn't stop piling up. Dinner still has to be made even if it is simple. The dog and cat still need and want your attention. You are unable to just throw in the towel for a day because in all truth no one really cares about what you are going through. Retract that a minute there is something that cares. Your body. It screams out to you in pain, debilitating fatigue and weakness. It forces you to the couch. Does it care or does it control? Yesterday it really caught up to me. I was even forced to take a nap. I haven't taken a nap in months. I am not a nap person but I was so tired I had to allow my body to win. I woke feeling a little better but was still in bed early last night. It is times like these it is hard for my mind to win over whatever is going on with the body. I made plans today to go stay with the grand babies while Katie goes to the doctor and I am going to go no matter what. Even if my body is not so thrilled my heart and soul are excited. I must, as always, force myself into some sort of normalcy on days like these knowing it will get better while also knowing that doing too much is going to knock me down even more. Keeping the positive mindset as hard as it is on these days is what keeps me sane and keeps me pushing on. It would be so easy to crawl into that dark hole and never come out but that isn't an option, at least for me.
It is funny that when I feel like this and have these spans of days that knock me down to the ground I always think of regrets. When I feel good and am able to do more I don't think of regrets because I am doing well and keeping busy but when I feel like this for some reason the regrets of life set in. It is like the devil pounding the why didn't you this or why didn't you that thoughts into my head. All the regrets that chronic illness brings. The why's of not being able to hold down a job. The regrets of not chasing my dreams of singing, going to college, taking art classes or helping others in a volunteer position. Yes, I have memories of some of this but had to give some up because it is just too much. One of the worst things for me is not being involved in this stuff but the driving. Yes, if you can believe it or not driving is exhausting it wears you out so much that by the time you reach a destination you are too fatigued to do what you went for, I know makes no sense to a healthy person, but true none the less. It is really strange how when you feel like crap your thoughts can travel right along with that crappy state your body is in. Even as I type here my left hand is getting cold and numb. Why? I have not had that in a long time and now it happens. Why? One little thing like a hand going numb can send you into a pit of trying to figure it all out. You live in a life of never knowing what might be serious and what might be no big deal. Most stuff isn't a big deal and if and when you do decide to call your doc they usually think you are nuts anyways so you hide, you live in your own little bubble of hell, the bubble no one else knows about, the bubble no one else really needs to know about, the bubble no one cares about.
I try to understand and believe I never will. I regret a lot but I also have to believe that what I have been able to do in the past is enough, at least for now. I keep my eye on the future that one day this will all disappear and I will be normal. Normal enough to get back out there and do some of the things I regret. Normal enough to understand that all I have been through was all for a reason believing that right now I don't have to understand I just have to live and make it through days like these. Live to the best of my abilities and on some days that may just be playing with a three year old and a five year old. Holding a new born and secretly praying they never have to suffer as I do because of the genes that may have been passed on to them. I spend my time trying to love the ones who truly love me and who understand, at least some of what I go through, but also knowing they never can.
Time to go get ready for my visit with my loves and pushing myself on to whatever else this illness decides to slap me upside the head with for today. I am strong enough to face anything that comes my way and believe me I will have no regrets when it comes to this illness thing because I know I fought it as hard as I could. Hopefully this will lead me to some sort of understanding one day.
God Bless!
Dianne
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