Life with a chronic disease sucks, some days worse than others, but you deal in whatever ways you can. Some people confide in others and lean on them for support, others keep it all locked inside until it eventually bursts forth, and still others are in denial. Different folks, different coping mechanisms. And then there comes that point, you know which one I am talking about, the point when your coping mechanisms aren't enough and you have a break down moment.
That is what happened to me tonight, the tired overwhelmed the "look on the bright side" part of my attitude and it all went to hell in a handbasket pretty fast from then on. I don't break down often, at least not in front of my kids, and I am trying to be as strong as I can for my husband Shayne also. Because I love them and I hate to see them in pain or worried about me, because I don't want my kids scarred anymore than they already are by all of this, and honestly because if you think having a disease is hard you ought to see what it does to the people that love you. It is one hell of a lot easier to be sick, hands down. Easier because the control is taken out of your hands, the disease is part of you and you cope because you know it is in your DNA. Cope or go crazy, and take everyone around you down for the spiral as well.
I popped a hernia tonight, my stomach wall tore when I was getting up off the floor where I was seated. I am still so angry, and being mad at yourself is an interesting way to live. Your rational mind says it isn't your fault while the argumentative side says, hellllooooo dumb ass, you're the sick one. I cried, more out of frustration and rage than anything else, that and because I am so tired of doing this. Shayne is starting back to school, Christopher has football right now, home school is back in, and I am popping hernias that will require surgery and with my slow healing will require who knows how much healing time. Bleh...
And just when you gripe on facebook about how your life sucks, along comes a good friend with the same disease you have and she drops a bombshell: Crohn's disease is taking her sight away and in a very short time she won't ever be able to see her children again. And suddenly, your day doesn't suck as much as you thought and at the same time it sucks more. How could life be so cruel? When, if ever, will they cure this damned disease so that not one single person has to suffer another minute with it?
And when someone comes to you, angry (hello, yeah) and hurt, and so confused about why the universe or a deity is allowing this to happen...what do you say? Do you tell them they are strong? My friend has a good point, she said that she knew she was strong because of all the crap she had survived with this disease so far....but strength has no place here. She doesn't need to be reminded she is strong and how do you possibly say: it will be okay? Not being able to see is not okay, never being able to visualize your daughters wedding, or your son's graduation is well on over past okay.
So on days like this, when someone says look on the bright side....I can honestly say the bright side bites the big one.
I love you Ashley, girl, I am praying for you.
<3
Help us find a cure for this damn disease, http://www.ccfa.org/
I've known you for a long time. And hearing about all you have managed to accomplish WHILE fighting this disease has amazed me. I can barely manage to convince myself to do anything when I have a migraine, and it does eventually go away.
ReplyDeleteThe thing is, Shayne and the boys and the rest of us, don't need you to be strong all the time, because it really does really suck, and it's not fair, and I hate it. And I don't use that term often, I rarely hate anything. It is horrible. Yet I understand the desire you have to make the most of whatever you do have rather than allowing the utter miserableness that exists to rule your household. And you are just amazing, but you are still a person, and people do need to lean on others, and scream about being frustrated.
The thing is that it hurts yes to see when someone you love is hurting, physically, and emotionally, but I don't know anyone that would trade having the experience for anything. It's a connection that runs deep.
Part of the problem is that there is just an overwhelming frustration for everyone about what to do. The only thing I can do, is share in the pain you feel, by empathizing, and sympathizing as best I can. It may not relieve any of your pain, but sometimes it's enough just for someone to join you in the misery as best they can, and to be willing to feel it with you.
I hate that the boys have to experience any of it, but the truth is, all the crap they have to deal with, because of this disease would never negate the love and devotion you've shown them. And you do have to deal with what's dealt to you, so that's all they can do, is do the best they can. They will be scared and angry and confused and there's just no way to stop that. Because it's NOT ok that you suffer. That's a fact, it's not ok.
I'm sorry to hear about your friend Ashley, I agree losing sight to the disease is just cruel. I was not aware that could happen due to it. Is there any thing this disease can't take from you? I don't know there is anything you can say.
I'm sorry my reactions aren't very uplifting but I worry and think of you often and I'm happy when you are having good days but I don't think I'm ever as able to ignore the parts that you cope with. I'm not an optimist, so I can't just not see the whole picture.
But I do believe, a quote from my favorite TV show, Angel. If nothing we do matters then all that matters is what we do. And I think usually that's sort of what you have been doing. Doing what you can with what you have to matter, and recognizing there's a limit to what control you have over the horrible circumstances.
I hope the surgery can be done soon so the healing can begin. I love and miss you. *big hugs*