I can't forget it

My health problems never let me forgot that they're there. Every second of every day I can feel it. My hands feel stiff and swollen (even if they don't look it.) My toes on my right foot feel like they have sharp toothpicks inside them. My calves feel full of angry bees. My arms feel tired and weak. My head feels full of cotton candy, like someone wrapped a scarf around my head that I can never take off. I also feel dizzy. Like any sudden turn or movement will make me crash to the floor. And my back feels full of sharp spikes that stab me whenever I move. My mouth feels full of sandpaper and I'm always thirsty no matter how much I drink. Sometimes the back of my throat feels like fire, or like someone burned my tongue while I was sleeping. I feel all of these things, all at once, and more, all of the time.

This morning I went to my gym to do my aqua aerobics class. I love being in the water and look forward to these classes. In my excitement I did something I used to do all the time. I jumped into the deep end of the pool with water up over my head. It felt wonderful! Amazing. Like I was a mermaid. But as soon as I surfaced... "Uh oh. What did I do!?" Both ears were full of water.

That used to be no problem for me. I'd wait till I got home and thump my head a bit on a pillow and it would come right out. But with my inflammation and dizziness, that was a real issue. I tried to get it out there in the pool. Slapping my head on the water like some crazed seal. But it was no good. I spent the whole class dizzy and miserable. 

When I got home I went straight to my room to thump my head on my bed. It's a trick I learned when I was a little mermaid who spent every day, all day in the pool all summer long. It never failed me. A solid 20 minutes later I finally got it out. It was a LOT of water. 

I wish I could forget about my needs and just jump, dive and swim underwater like I used to. I wish I could have a glass of wine with a big plate of pasta. I wish I could hold a super cold glass and enjoy the coolness on my warm hands. I wish I could walk all day long at Disneyland or on vacation and not give a second thought to it.

But I can't. Not anymore. Now I have to plan, protect, prepare... I need "Meg" with me in case fatigue crashes down on me or my muscles give out. I need special insulated cups to protect my overly sensitive hands. I need to think about accessibility when making plans and going places. I need to not commit to too many things because I know it will take all of my limited energy. I need to avoid some foods because they could make my mouth ulcers worse. I can't forget that I have a chronic illness. If I try to forget, to pretend I don't, to assume that I'm just fine, then I only feel even worse. 

But I'm still lucky. Still grateful. I have many resources, lots of support and I'm a very smart person. I'm great at problem solving and working around things. I also have a lot of experience from raising a special needs child. I live in a very accessible town and even my house is super accessible. I have options, good health care and people looking out for me. I also live in a time when there are a lot of tools to help me work around my needs. And not just tools, but pretty tools! 

Yes, there are many things I can't do anymore, but life is full of constant change. There are tons of things that I CAN do and that list keeps on growing.