Well the post-pregnancy decay of my body has set in. I'm in physio at the arthritis clinic again with a very lovely woman. For those of you that don't know I have a condition called Ankylosing Spondylitis. I believe I have written about it before, but just in case you haven't read every post it's a form of arthritis that is an auto-immune, inflammatory disease.
Physio has been hard, especially fitting in time to do the exercises. Plus the exercises while good for me and ridiculously easy, make me sore. Come on! Lying on the floor with your palms up shouldn't be an exercise. It's so frustrating!
There is just so much I need to work on and it's just as my physiotherapist said "to maintain what you have now". I won't even be getting better, that will come later if at all. When we get talking about how I have bone edema and how that doesn't show up on xrays until it's too late and the damage is done and how the next step, once I'm done having babies and nursing them is biologics. I remember leaving the rheumatologist office and on the way out is the room where the patients sit in their oversized chairs attached to IV's looking solemn and overweight from the lack of ability to move their bodies. Is this my future? That thought scares me more than anything. I am so scared.
I've found a few strategies that help me lately like hot baths and massaging my leg when it's weightless so I can actually relax enough for it to be effective and going for walks as long as they aren't too far or too stressful. Leaving the house today was just insane and it made me want to tear out my hair. I asked them about 10 times whether they actually even wanted to go outside.
As scared as I am about what my future means for me, the hardest part is how it might affect my kids. When I have flares I already have to have Eli help more than he should and I can't bend down to tie my kids shoes, I can't carry my baby sometimes in fear that my leg is going to give out and I could fall. Eli is finally at the age where he is starting to understand that my body doesn't always work the same as others and it's really hard to be so vulnerable and ask so much of my little man. Sometimes I'm so angry at my body. I'll be 31 next week and this should not be how I feel. I want to run, I want to play football, I want to play in general, no restrictions and enjoy my time with my kids. I get angry and stressed and sad and then I end up sitting on the couch most of the time, with thoughts of I'll get healthy later when I'm feeling well. It's such a double edged sword that I can't stay active but must stay active to keep my body moving.
Feeling down but trying to keep hopeful.
