Ugh… sorry I have been so bad at posting lately. I have had lots of ideas for posts, but just don’t seem to have gotten around to them.
I was going to write a post called oopps… Because a couple of weeks ago I let my excitement that I felt good get ahead of me, which ended badly. Ooppss.. So I was with family friends, when I was asked what I wanted to do. I knew what I wanted, I had wanted to do this for a long time, I just wasn’t sure if I should do it. But I put those feelings aside, and decided that I was going to do, if only because I could. So that was that. This is how I ended up with C and J, eleven year old twins, skating along on roller blades. Throw in a bumpy path, some sharp down hills, and well me, and there was a recipe for disaster. In the space of about 20 minutes I managed to fall bruising (at least we think?) my coccyx, and shortly after falling and dragging my knee over some rocks, successfully gouging a nice hole in my knees. So with blood trailing down my leg, we decided to go home, clean the wound (which took ages and much scrubbing, as there was so much dirt in there that didn’t want to come out) and do something a little more tame.
Looking back maybe it wasn’t such a great idea, but I think I would still do it again. For the same reason I did it the first time. I wanted to take advantage of every ‘good’ minute I had, before I couldn’t anymore. The only thing I would change is to maybe have gone in and got stitches or steristrips applied to my wound, as my mom (a Dr) thinks that I probably should have gotten stitches. So now I will have a lovely, bigger scar, and a funny tale to tell.
But I digress. The point of this post was to talk about the frustration I am feeling, about being on the downward slope again. Yup you guessed it, my infusion seems to be wearing off, with the peak being at only five weeks. It’s frustrating that it hasn’t lasted me the full eight weeks. But even more, it’s frustrating that I don’t have the same amount of energy, that my joint pain is once again increasing along with stiffness.
After two beautiful weeks, where I felt so close to normal that it actually felt like a dream, I once again am facing the reality of my autoimmune arthritis. After being able to ride a bike, go rollerblading, only need about 10 hours sleep, I am finding it hard to adjust to once more having limitations, to having to be more selective and plan out my day. I miss the spontaneity, the freedom, and the energy that I had. Even though it was only for two weeks (and kind of for the three before them) I once more feel like I have lost something. Even though I am still much more able-bodied and energetic than I was before my infusion I feel disappointed with my current level of health. I got to have these golden two weeks, and though I tried to grasp it with both hands it has once more been tugged from me. It’s just hard to accept where I am now, knowing where I was two weeks ago. And even though just a month or two ago I would have killed to feel how I do today, it doesn’t seem enough. I had a taste of how my life used to be, and am now going through a new process of adjusting and mourning that loss, as the wound has opened up afresh.
Don’t get me wrong, I am still making sure that I enjoy every minute, that I do things that I wouldn’t have been able to do, and that I appreciate the fact that I can do them. I am still thrilled to have the amount of energy that I have, to be in a place where my pain is so much better than it was, to be able to play with my little cousins. To go out and see the sights, do things, anything. It’s just I know it could be better, I have felt better just a few short days ago, and it is hard not to be frustrated that I don’t feel that way anymore. That even though I can do so many things, there are still things that allude me.
I guess this will always be hard, no matter what position I am in, no matter how good or bad I feel. There will always be a part of me that wants more, that longs to be the person I was before. I just have to try to make the part of me that is happy, that enjoys things, that takes advantage of everything I do have, that see the good in everyday, no matter how small, just a little bigger (hopefully even more) than the part of me that wants more.