Monday, October 13, 2014

Good Days.

    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. 

Monday, September 8, 2014

OCD, PTSD and the Fear.

I do everything on purpose.

Not just on purpose as in being mindful.

On purpose because I am afraid. Every day I am afraid. I call it "The Fear". It has a life of it's own. It controls me and everything I do. I don't want it to control me, but the truth is, I need it to control me.

My whole life I have had pain, fatigue, and outright clumsiness. I have EDS.

Everybody has this thing they call proprioception. It is, basically, how your brain knows where your body is in space. It is what gives people graceful movement and the ability to not run into objects. Mine is flawed. I trip over nothing. Literally. It could be the flattest floor ever and I could be barefoot and I would still trip. I could be trying to walk around the door or the pole or the counter and I will run right into it. I could be trying to catch that ball or doing that cartwheel but I will miss the ball and get hit in the head and I will fall during that cartwheel. And get hurt. And then I will bruise and keep hurting and keep aching and whatever joint got hurt will keep hurting and be difficult to use. I am afraid of that pain. Constant (chronic) pain can lead to mental illness.

I remember the first time I ever got hurt. I think it was the Pain that caused the Fear to start. I was less than 2 and had a little riding toy. The head had a point. I bumped into something and fell forward on it. The point jabbed me in the diaphragm. It was so intense that I still, to this day, remember exactly how it felt.

I have EDS. I have an increased sensitivity to pain. Well, to everything. Even the sensation of my clothes on my skin. A breeze that would be refreshing for someone else might be too cold or harsh for me and might actually cause slight physical pain or persistent uncomfortableness. I feel things way more than other people. I can handle a lot of pain though. When you have chronic pain another pain signal is easy to tolerate. Doesn't mean I don't feel it, just that I can ignore it longer. I have a lot of practice. There are some kinds of pain I can't tolerate. Pain in my head. I can not stand pain in my head or my teeth. I WILL cry about that kind of pain. I will beg for pain medicine for that kind of pain. However, pain meds don't work very well for me. I need 2 or 3 times the amount other people do. My body metabolizes the meds too quick or my signal is too great for it. I am not sure. All other medications are too strong and I get too many side effects. My systems are sensitive.  Digestive, circulatory, endocrine, neural, etc.

I don't like pain. I don't think many people do. Well, not this kind of pain. This kind of pain is neither fun nor erotic. It is unending, constant, depressing, and tiring. I do everything I can to reduce my pain. I started doing this when I was young. The doctor calls it OCD. I call it Fear.

I only have so much energy every day. I have to parcel it out. If I am not careful nothing will ever get done. I try to stick to a pretty strict schedule and do things methodically. I do everything on purpose. The way I walk down the hallway, one foot in front of the other, slowly, watchfully, so I don't trip. When I cook, I always clean as I go. It is easier and uses less energy to clean as I go instead of doing it all at once later. Doing dishes, folding laundry, vacuuming the floors are all done in a specific way. The way that causes less pain, uses less energy and does the best job. Everything has to be in a certain spot, stacked just right, and in a certain order. That way I don't waste time or energy looking for things, things won't fall in my head, and I won't twist my wrists getting heavy bowls out of a cupboard that is too high.

I don't engage in contact sports. I don't ride bikes, roller skate, or jog. I don't like moving fast at all. Moving fast leads to twists and sprains, or falls and bumps. I hate having so much pain all the time, being afraid of more pain all the time, and constantly having to think about how not to have more pain all the time.

The therapist says it is PTSD (post traumatic stress disorder) because of all the times I have been extremely hurt and injured. They say it OCD (obsessive compulsive disorder) from not feeling like I have any control over my life. I say it is just a survival mechanism and the way I have to live in order to remain sane.