This is the third or fourth day of waking with intense pain so bad I can’t think or even talk well. I had to wake someone up to get me a pain pill at about 5:45am. I couldn’t sleep through it. When it happens in the morning early like that, I try to sleep through it, but I couldn’t. I took a whole pain pill this morning, when I usually take a half of one. I was able about 20 minutes later to go back to sleep, and when I finally did wake around 9:15 or so this morning, I was doing better. I managed to get up and make breakfast. We’re doing a managed calorie and nutritional diet, but my family doesn’t really know that. I manage it through MyFitnessPal.com. I’ve been enjoying using it. I’ve lost 20 pounds since I started using the website. I love that. The family has loved the food. Everyone who has needed to lose weight has with it. That’s awesome. If you want to see my recipe for breakfast this morning, you can see it on my food and recipes blog here.
The reason I do the food stuff is because it’s one thing I can control about my health. I can’t change the fact I have CTEPH. I can’t change having congestive heart failure. I can’t change having the Factor V Leiden gene mutation. I can’t change having hypothyroidism. I can’t change having adrenal insufficiency. I can’t change having any of the other conditions or disorders that I have that come with being who I am and living with a terminal illness.
What I can change though is other aspects that might have contributed to my being sick. They didn’t make me sick, per se, but they contributed to my being sick. And I can’t go back and change the past. But I can change the future.
I can’t control so many things in my life now, but this is something I can control. I can eat healthy food. I can manage my weight. I can manage the nutrition that goes into my body and make it the best it can be. I can exercise as much as I’m able. I can do everything I can to be healthy by eating right, exercising right, taking my medication and supplements right, and improving my health conditions as much as possible. THAT is something I CAN control. So I do.
And if, along the way, I teach my family to be healthier and happier and prevent them from going through what I’m currently going through, so much the better.
But also, like I told my good friend and fellow writer, Rissa Watkins, the other day–there is so much now that I can’t do any more like I used to. Cooking for my family is one thing I CAN do and I am pretty good at it. I’ve made it more than just a cause for my and my family’s health. It is a hobby now too, and I’m good at it. And it feels good to be good at something again. It’s tough when you’re sick and you feel like you’re losing so much all the time, every day something new, it seems, is taken away from you. Cooking for my family is something that I can do that wasn’t taken away from me. I’ve had to modify HOW I do it, but I can still do it.
I mean, I sit at the table mostly and have my family bring things to me. When I cook in the kitchen itself, I use a desk chair and roll around the floor to cook. But it works. It keeps me from exhausting myself and allows the experience to be fun. Learning how to modify things in my life is just one thing people who are sick have to do. You learn to modify everything.
I use a wheelchair when I go out in public. I use a shower chair when I take a shower. I use a rolling desk chair when I cook in the kitchen. I use oxygen all the time and have to turn it up when I try to exercise. Even when I go swimming, we have to move the extension cord and oxygen concentrator outside and drag the 50ft tubing across the rock garden to the pool so I can swim with the oxygen. Then the dog likes to try to bite and ‘rescue’ the tubing, and he gets tangled in it, and it’s a real pain in the ass, but I love to swim and it’s worth it for me to do it.
Sometimes, I feel bad that my family has to modify so much for me, though. It’s not like we can just pick up and go anywhere anymore. We have to plan everything. Are there enough oxygen tanks? Do we have the wheelchair charged? Will we be gone long enough to need your meds? Do you want to take any of your electrolyte drink with you? And on and on and on.
Life changes when you’re sick. It changes in great big huge ways that are obvious to everyone.
But as I’ve said so many times before on this blog, It changes in small ways that you don’t even think about. And it’s the little things that add up to mean the most and cause the most frustration and pain.
All those little things… they add up.
Anyway… that’s just some rambling thoughts on my mind today. I guess I’m feeling a little sorry for myself because it’s been about six hours or so since I took my pain pill this morning, and I’m really feeling the pain again. I hate taking pain pills to fight the pain, because they make my brain dull, fuzzy. They make me numb, in a sense, and I don’t like that numb feeling. But I don’t like pain more than I don’t like numb. Pain makes me a bitch. You don’t even want to know me when I’ve been in long-term pain. Everything pisses me off. Ugh.
But in reality, I try so hard to be upbeat and happy–not fake happy, but real upbeat and happy–and that’s a hard thing to be when the pain is on top of you holding you down all the time. So I just popped half a pain pill, and I’ll be contentedly numb soon enough, I hope. But I hate having to hope for numbness. I wish there were a better way. I wish they knew what was causing the pain.
Pain, pain, go away, don’t come again another day…
Love and stuff,
Michy
