Today was supposed to be flawless and fun and amazing... and, in a way, it was. I am trying SO HARD to stay positive and to count my blessings. I am trying to focus on the fact that this is the best I have felt in over 4 years. I am trying.
Heading to Stampede grounds usually consists of a couple tasty (but super unhealthy) random foods, including fried treats, fudge, caramel apples, lemonade, and maybe also listen to some music. Walking the grounds has been pretty impossible for the past few years... so THIS year, I was really looking forward to getting to spend a hell of a lot more time on the grounds. And, to be fair, I had a really good day yesterday - playing some rigged midway games and enjoying some extra food... and even though I still needed help and still needed to use my cane and take the SkyRide to go the length of the park, it was really enjoyable.
Well, tonight was the Brooks and Dunn concert. We have had the tickets for months, so it was something I had been truly anticipating for a while. The day started off decently enough. Had to use my cane, of course, but I am pretty used to that now.
No...
What got me is actually a bit of jealousy. I was jealous of my former body. I was jealous of my former athleticism and my ability to two-step and go on tons of rides and be carefree - when I didn't have to limit rides or keep my excitement in check so that my throat won't swell shut - I was jealous of previously being able to walk stairs with no second thought. I was jealous of being able to sit and enjoy a concert without nearly passing out from pain. And I am TERRIFIED that I might be in this much pain on our wedding day... and it had me wondering if I could handle it.
I enjoyed the concert, but was very distracted. I had maxed out the amount of medication I could take, so there was absolutely nothing else I could do for the pain, except to grin and bear it. That proved astronomically tougher than most times. I spent the majority of the concert trying to hide my teary-eyes from my friends and forcing myself to look away from all of the couples two-stepping by the floor seats.
But tonight is my night out. This night has been planned for months and this was MY night to enjoy music and stay out late and maybe even have a drink or two. It was MY day to let loose and try to feel a bit normal.
I am truly lucky to have been with people who couldn't care less how slow we had to walk. They were all ready with a helping hand or arm to help me climb the stairs. They were all patient and kind and amazing people to be around.
We decided to go to a nearby restaurant and have some good food and great conversation after the show.
Unfortunately, I spent the entire 'hobble' over to the restaurant in excruciating pain with tears streaming down my face. And being my stubborn and proud self, I also spent most of the walk over there hiding my face from everybody. I even positioned myself so that, even though I had to lean on Ryan on one side and my cane on the other (I really should have been using a walker or a wheelchair at this point), I didn't even want to let HIM see how much I was struggling.
When we finally got into the restaurant, I went immediately to the washroom.
So here I am. Having the most real moment I have had in a long time. Bawling my brains out. Dry heaving from 10/10 joint pain. Having a much-needed BIG crying fit.
(And then dealing with the broken toilet paper dispenser, because I always seem to pick the most dysfunctional stall).
Once I get it all out, I fix my face, take a big breath, remind myself that the walking is done, there are no more stairs, and I can sit in a very comfortable padded chair and finally focus on some great conversation. I had some great food (albeit slowly, since I was still terribly nauseous), and drank about an entire jug of water all to myself.
But I still managed to have a great night out. Talking and laughing and singing along to some country music and people-watching and enjoying the night with the love of my life and our amazing friends.
You can have real moments of utter frustration, being pissed off at your own disabilities, of being sad and exasperated and in so much pain you can hardly stand it - but STILL have a great night.
Some people might wonder why. Why push yourself to the end of your rope? Why push yourself over the edge of being in Hell in regards to pain?
Because this is STILL the best I have felt in over 4 years... and I have NO CLUE how long I will feel like this. I could wake up next week and then never feel like this again. My health could deteriorate even further and I may never see another good day... And I would HATE myself for not taking advantage of the one year I can do SOMETHING at Stampede. The one time I did not give up and simply grab a cab to go home before everyone else. The one time I didn't have to admit defeat.
Sometimes it is important to simply say:
"F■^£ you arthritis. F■^£ you HAE. F■^£ you Crohn's. You are not ruining this for me. Tonight is MY night. This week is MY week".
I will spend a long time recuperating... but the inflammation and flare up WILL settle down at some point. I have not made the actual disease, itself, worse. I have not progressed any deterioration. I have not done irreparable damage. I have traded potential good days in the next few weeks for one night out with friends. I have borrowed energy from my short-term future for some excitement in the present.
And I WILL be able to have a day like this again - on our wedding day.
At least no one will judge me for having tears streaming down my face on that day. They just won't necessarily know when my tears are from happiness or from intense pain.
:)