Good days are hard to come by. It seems like I spend most of my time being tired and in pain. I have to maintain a fine balance between what I eat and what I do to maintain some level of competence and ability. If I let just one thing go, it all falls apart. Sometimes it is out of my control no matter how much self control I had.
I recently got over an infection. I know it was in my uterus but I have no idea what caused it. The doc did not swab or sample the fluid in my enlarged and painful uterus. She sent me home with some strong antibiotics and I muddled trough the next 2 weeks as best I could. I spent quite a bit of that time in my bed trying to sleep. The antibiotics made me dizzy and wreaked havoc on my dysautonomia. 3 days after I finished the meds I felt awful, in pain, a migraine, and I still had abdomen pain. The same as before I took the antibiotics. But now on top of that i also had bad shoulder and arm pain and vision changes. I was scared I hadn't cured the infection and tired of being in so much pain. I went to the hospital. Of course, every test showed that there was nothing wrong. A few days later I started to feel better.
So now I feel better. Today was a good day. It is hard to remember that those happen when you are laid so low for so long. I spent 6 weeks being terribly ill. It was awful. But, here is today. Granted, I used caffeine to help me achieve these ends, but my house is clean, I made dinner, and I managed to sew the patches on my daughter's girl scout vest. I even managed to talk the toddler into wearing underwear, but, alas, I could not talk him into using the toilet. He did help me fold towels and cuddled with me for his afternoon nap. Today was a win. Today I felt like a member of the world, the human race, and my family. I didn't feel like a lump of pain and misery. I wasn't angry at the world. I didn't feel like I was going to be in pain until I die. I didn't feel hopeless. As a matter of fact, I felt hopeful. I might have drank several cups of coffee and even more cups of diet pepsi, but I didn't need any pain medicine, ibuprofen, or anything else. I didn't feel depressed or oppressed, bitter or malcontent, or useless and unwanted.
It is sad that I know it won't last. I try not to sit around and wait for the other shoe to drop but it will happen. I need to write more posts like this, to remind myself, when I am down in the depths, that there are heights as well and they are worth it. I spend too much time wallowing in my despair. I need to remember the good days, to keep me hopeful.
My mom always has nice things to say to me. For some reason she always sounds so optimistic when she talks to me. She is supportive and kind, a friend and a mom, and honest with me. I am so grateful for her. She has what I have. I know she has the EDS because she has the fibro. I know she has the fructose malabsorption because of the gastroparesis and bloating. So I know she feels like I do. I could never figure out how someone who felt like I did, could always have such optimistic supportive things to say. I know her thoughts must get deep like mine, especially when the bad days strike. How is it that she can always be nice to me and I just want to lash out all the time. I remember my childhood. I remember how hard it was for her to raise my brother and me. She is who I want to be like. And on my good days, I feel like I could be.
It is so much easier to be nice and patient when you feel good. It is a far different thing to be nice when you feel like you are dying. When you feel like you are constantly being attacked by your own body you get angry and defensive. You aren't being attacked by some outside force that you can fight. It is all inside. It is all you. It is your body, your muscles, your joints, your nerves, your emotions, and your fears. It all comes together and attacks you from all sides. Flight or fight. You can't fight yourself so you turn around and lash at anything close to you that bothers you in the slightest. You become the most miserable person on the planet. It is a constant struggle to fight to control yourself. It takes energy to remember not to lash out at people. Especially when you are surrounded and can't find any time or space to be alone. It wears on you.
So remember the good days. Take pictures of them and post them in your house. Have pictures of yourself smiling to remind yourself that you can.