I just found out yesterday that I can actually get disability benefits from one of the diseases I have (interstitial cystitis), because it is considered as "debilitating as the end stages of renal failure and kidney dialysis and the equivalent of cancer pain". While I am not applying for benefits at this time, and my pain has not reached this level, my ability to fully participate in life has definitely gone downhill. You would never know this by looking at me, would you? Nope. I still have a smile on my face. I still have a sparkle in my eye. I still post all my happy things on facebook, but inside, I am wondering what the hell am I gonna do with this mess called my life. How am I going to enjoy life in the midst of all this turmoil?
I have been stuck in a "flare" with my illness since spring, which makes any physical activity next to impossible. I can't walk for very long, I can't ride my bike, shop for a day, and I don't leave my house unless I'm with someone who "gets" that I need to sit down frequently or be near restrooms almost constantly. Add to this my frequent migraines, sometimes a few a week, and the added seizure disorder, and panic attacks that sneak in, and I wonder sometimes what happened to the semi-normal person I used to be? I used to be carefree and worry-free, and now my purse is a pharmacy, and everyone with me has to hear about my conditions, and why I can't go here or there or do this or that, or why I have to cancel at the last minute or commit to anything. I look around at what I used to be doing and I'm not doing any of it anymore. Life has become very much a burden. I'm a fighter, and not a giver-upper and lately I've just been pretty angry that any of this is happening, because I just feel like I've had enough. I don't understand why. Just why?
The grief in the last four years has been heavy and hard to bear on top of everything, making healing even harder. And when doctors tell me to exercise, I just look at them like they are idiots. Don't they know how much I would love to be able to do that again? My body won't cooperate with my mind. I feel good for a day, do something physical, then pay for it for two days.
I have prayed for God to remove this thorn from my side, as the apostle Paul did, and for whatever reason, He is just not removing it, but it seems it is just in there tighter and tighter. While my faith is intact, my energy is low. While others are out enjoying life and doing things I wouldn't even imagine doing, I am home sick, and that is the part I don't understand. I don't know God's purpose in this. Why He would be withholding my own life from me when that's all I've ever needed in order to be the woman I need to be for His service. Makes no sense.
I needed to vent today, because if I don't, it gets very ugly for the poor man's ears who has to listen to me, and the things he has to hear worry him very much. I would love to go walk in the woods the way I used to, but I can't do that anymore, so I can't release a lot of the stress going on in my mind the way I need to do. I won't be sharing this on Facebook, because to be honest, some people read it, and don't comment, so I don't think that's really a big help to me right now. I'd rather talk to the wind.
Thanks for listening, wind.