The days I do physical therapy I get up and get dressed and leave the house and I feel almost normal. Then I arrive at physical therapy where I feel normal-ish. then I see myself in the wheelchair reflected in the mirrors or windows as I roll by and I remember I am far from normal. I hate my reflection at large. The fluid-filled belly looks huge and I hate it and don’t know how to get rid of it without yet another hospital stay.

Which also reminds me I’m not normal. I know we’ve been through this before. Who wants to be normal, right? It’s overrated. I just want to be more normal than I am right now. I don’t want to be normal but I’m tired of being a freak. I get stared at. In the wheelchair, fat fluid belly sticking out,  wearing an oxygen cannula and the big oxygen tanks on the back of my wheelchair. I also don’t wear shoes. I wear socks from the hospital with support slipper bottoms but I don’t wear shoes. strange me.

And I don’t care. I went to my first physical therapy session in my nightgown. I felt horrible about it but if I had had to get dressed that day, I would not have gone. I chose to go. They kept me in the back away from others which made me happy at the time. I felt bad about going like that until one day I saw another woman wearing her nightgown to therapy too. Does that make me normal or are she and I both abnormal?

Or does it matter? I said I don’t care but then I’m making yet another blog post about how I’m not normal. There was a time I railed against normalcy. Now I seek it? Makes no sense.

If you were to see me, you would react too, to my abnormalities. You might laugh or turn your head quickly. You might feel sorry for me. Maybe you would feel disgusted. I’ve taught myself not to judge because I know what I have to face in order to function each day and I know someone looking at me from the outside would not understand what I have to go through to get to that point. I know how hard just putting on a bra is for me that it leaves me winded and desaturated enough I have to take 2-3 minutes to recover from it. Then I have to put a shirt on, then the pants are the hardest because I have trouble with balance and pulling up pants while standing and balancing is tough for me to do.

I WALKED TODAY!

Last physical therapy session, I walked! I managed to walk from one of the tables to the other table and turn around and came back to where I started.  I had the walker and the wheelchair was behind me the whole way and I walked without getting too winded and with my heart rate only going up to 125, which is good for me. I was really impressed with myself. Then I completed my other strengthening exercises. The time before I was able to stand for one minute and twenty seconds before I had to sit down. We’re working on extending that to 2 minutes regularly without desaturation (lowering of my oxygen) on the pulse ox. So far, it looks doable.

I’m making progress. I’m more flexible. I can straighten and bend further than I could before and she’s measured that. There has been an improvement in the number of reps I can do. I feel like the exercises are easier to do than they were when I first started too. All said and done, physical therapy is working and I’m doing better.

The good news is, for ankylosis spondylitis and osteoporosis, I get physical therapy long-term. Weight-bearing exercises help strengthen the bones and make muscles do the heavier lifting too which protects the bones. All the way around, weight-bearing exercise is good for the body if you do it right. PT makes sure I do it right.

I’LL NEVER BE NORMAL

So no, while I’ll never be normal, there’s a physical ‘typical’ line that I’m trying to reach. I want to walk like a typical person in a typical way. I don’t know if I will ever make it to that, but I’m doing the best I can.

Thanks for being with me on this journey. I love you all so much even you lurkers who are reading this but will never comment–I love you too! (HUGS)

Love and stuff,

Michy