Lately the painful parts of this condition are taking a toll on me. I try my best to be the IC optimist, but the past month or so it has been really hard. I don't know if it is the change in seasons or my failed DMSO instills, but my pain is high, high, high.
It's to the point where I am never comfortable. A good day means the pain is low. It is rarely ever gone. Sometimes I may get a random hour of freedom, but then it is back. But most of the time it stays around a 5 minimum lately. Then in the evenings most times, all hell breaks loose and the 9 and 10 sharp pains attack. It is like living hell.
By this, I mean that I am going through the motions: I still write, I still grocery shop, I still go to restaurants, I still do laundry, I still try to socialize some etc. But to be honest, there is only so much that I can enjoy. No matter what I am doing no matter if it be the most boring thing on earth or the most fun thing on earth the pain is always impacting my body. There is part of me that can not wait for things to be over while I am doing them. The pain is just so distracting that sometimes all I wanna do is run to my couch wearing loose pajama pants and curl in a ball with a heating pad. Even if I am shopping in a mall (one of my all time favorite past times as a Jersey girl) I can't wait until I have purchased the last item I came for so I can go home and attempt to find some form of relief.
Before IC, I was the kind of person who pushed the hardest at everything. I did too much, committed to too much, ran around too much, but it was okay...a part of me really liked it. Now I do things and I feel like it is just getting by. I feel like I am never as happy as the people around me.
If I am in a restaurant or a bar with shiny happy people, I just feel like one giant facade. IC is such an invisible condition, that I feel like an undercover agent. I have the same smile on my face as all the other girls. I have the same over priced handbag and new boots as many of the women in the crowd. Friends and strangers ask me where I get my nails done or how my day was. They think I am one of them, not knowing as they are smiling for real, I am smiling to hide the pain---the shooting and throbbing and burning. All I want is to sleep because it hurts so badly.
I can totally see why someone with IC would never want to get out of bed. I keep getting up everyday and I will continue. I continue for my husband and my family and my friends. I continue because I know I have a lot to offer to the world and I want to contribute something to society everyday. I continue because there are certain things I need to do to be able to survive in the world. But when push comes to shove, the deep rooted in joy in so much is gone.
Each day I am going through the motions. But as long as the pain is this draining, am I really living life? Or just something like it?
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4 comments:
I <3 you girl! Could no have said it better myself...I was trying to get at this in an earlier post I did. I was actually MAD at myself when I started to limp due to the pain of the SCS implant they put in to "treat" my IC. I get MAD at myself when it shows.....WHY??? Then I get mad at people who look at me and judge me bc I am on SSI; I don't look sick. IC really plays with your emotions and changes who you are as a person.
<3 you too. We must keep on going and of course keep on blogging ; ) Hopefully change will come. We need more doctors and the media to be aware of this type of pain and how we need CHANGE and a CURE.
THIS is an EXCELLENT blog you wrote! You wrote my story!!! And I agree with Melinda...people have gotten mad at me because I am SS and don't look sick either. So hard at times! Praying for a cure for us all!
I've had those days, where I think dying would proabably be easier than living like this. :-( I plug on though, like you, because some stuff just needs to get done. And other people, they don't understand why you can't come to their party or whatever. It hurts. I didn't use to turn down invitations because I didn't feel up to it... I cry every time I see one of those comercials for Vesicare or Detrol because someone as young as me shouldn't be taking that stuff. :'( I know you have probably tried everything but a friend had been urging me to see her Doctor (a Traditional Chinese Medicine guy she sees for her Muscular Dystrophy which "modern" meds weren't helping with) for ages and I didn't go because it seemed silly and kinda hokey but I finally went to the guy three weeks ago out of desperation and since I've been taking the herbs, berries, branches, roots, bark etc. he prescribed (which tastes revolting by the way), I feel so much better. I quit taking my Vesicare after just a week of the herbs and fully expected horrible repercussions but I didn't, I just kept feeling better. I don't know if it's temporary or what but I haven't felt this good in years so I don't care. I almost feel normal. Christmas might even be normal this year, without me in a hurry to leave so I can go home and curl up and try to feel less uncomfortable. So, I was just wondering if you'd gone that route because maybe it might work for you like it has for me. Even if it helps a little bit or for just a little while, it might be worth it to try. I'm so sorry you are hurting, I wish I didn't know how you felt, I wish someone could just fix this for good. :-(
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