Tuesday, March 24, 2015

Fighting For My Life.

Nobody believes me when I tell them how exhausted I am. I must not look tired. I must not look like I am so exhausted that it is a major thing to get up out of my chair and do what little I do. I look young, healthy, thin, pretty even. No one understands just how bad the struggle is to get up and stand and do housework. Just housework. By housework, I mean dishes, washing down the counters, switching laundry, changing cat litter, sweeping, cooking dinner, making appointments, grocery shopping twice a month, paying bills once a month, talking to teachers, potty training a toddler, cooking food, changing my clothes, and maybe taking care of my own hygiene a few times a week. That is a comprehensive list. It does not leave anything for date nights, hanging out with friends, having friends, visiting family, taking the kids to all the fun things I need to take them to in order to keep them active, playing outside, helping with homework, cuddling, conversations, going for walks, doing fancy things to their hair for school, giving them baths every night, reading them bedtime stories, and many other things. The list of things I can no longer do is insanely long. It gets very saddening to think about all the things that I need to give these kids and can't.

Every day, I get up out of bed. The task is huge. When I regain consciousness, the first thing that I feel is pain. I wake up with a headache. It is huge and pulsing. I can feel it in the back of me head, in my temples, behind my eyes and in my ears. It pulses and vibrates, whooshes and rings, aches and stabs. The second thing I notice is the pain in my legs. It feels like static. The calves ache and pulse, my ankles creak and sting, and my knees are stiff and sore. The I roll over hoping the headache will lessen. That makes my hips hurt. They ache and sometimes I can feel some ligaments pull too far like when i was pregnant. Sometimes my pubic symphysis pulls apart a little. I lay there for a few minutes to catch my breath, knowing that more movement will mean more pain.

I can hear everyone else up for the day. My husband gets up real early and is the one who gets everyone up for the day, including me. He is so kind about it. Kissing me awake, telling me gently but firmly that it is time to get up and he is going to turn on the lights. I have told him so many times how hard it is to get up but that I need to or else I feel worse. I have already gone through all this pain before he even comes in to turn on the light. I am already exhausted and want to go back to sleep, but I get up. As soon as I try to sit up my back complains. Did you forget about your scoliosis while you were sleeping? Being upright lessens the headache a little, but my lower back is sore now. It makes my hips creak. I think about standing up. I'll just rest here for a minute. It helps to go slow, for the pain and the orthostatic intolerance. Finally, I stand up. I have to go make the kids breakfast because they are out of cereal. The pain on in my legs turn into a buzzing feeling. My knees complain, the bones feel like they are rubbing against each other. My ankles feel weak and stiff. The bottom of my feet are cramping. I hobble to my dresser.

I feel drunk and hungover at the same time. The world is wobbly. Everything looks dull and staticky. My head is still ringing. It is loud in my ears. As I stand at my dresser, reaching for my pajama pants, the ringing dulls a little, the pain drains down to just being in the bottom half of my head, and my eyes feel less cloudy. Now the rest of my body starts pulsing with the pain. It is like it just migrated instead of getting better. Now my arms and my legs pulse with pain. I keep moving. I have to go make breakfast so my kids can go to school. I have my pants on, slipped into my slippers, put on my sweater, and checked all my ring splints to see if they are all still there. Now I have to walk down the hallway. Each step is painful, but not too painful. I have learned to live with it and to go on moving anyway.

I make it out to the kitchen and heat up a mug of green tea. I quit drinking coffee. I was told it was a fructan. I don't use sugar or anything in it. I use it to take my stomach pill. Then I fry up some bacon and eggs for my kids. Usually they make their own cereal, but they are out today. I was going to make bacon and eggs for myself anyway. The skillet is heavy and hurts my wrist. If I eat anything with carbs for breakfast I will have hypoglycemia an hour or so later. So I eat the same thing every morning. After we eat, we all take our morning meds. Then I go to the bathroom and make my bed.

Now I am exhausted again. I sit down in my chair and reach for my phone. I log my food, my symptoms, and how much activity I do. I log my blood pressure and heart rate. It is a little lower than usual this morning, but not low enough to be too concerned. I kiss the older kids good bye and wish them a good day at school. Here I sit trying to get up and do more stuff. I look through facebook, liking family's pictures and statuses, reading on EDS groups and offering support, and sometimes writing here.

I have to get up. I have to take a shower today. It has been a few days and I can feel it. I know the 5yr old and the 2 yr old will want to get in with me. Whatever. It's better than them not getting clean and I won't have to worry about what they are doing while I am in there. I just have to get up first. Maybe in 20 minutes. Remember to not make it too warm this time. I know your toes always feel cold but if you make it too warm you will get more tired. I really want to wash my hair. A shower might help wake me up. Just do it. Just get up. Why is it so hard?

Time's up. Get up. You know you have to. Just get up. Please get up before you run out of time for a shower again. You can sit down again after you get dressed and brush your hair. Just please get up and take a shower!!

Ok. Took a shower. The 2 kids got in with me. Washed all of our hair. The kids dressed themselves. They are actually pretty good at matching stuff. I am impressed. They even brush their own hair and teeth. Sweet. My hair and teeth are brushed. I feel like I just did an hours worth of heavy exercise. I am exhausted. I wanted to put on eyeliner and mascara. I chose jeggings again. I love the way they feel on my calves. They are tight on them. They lessen the pain and tingliness in them. They go all the way up to my belly button. My day always goes better when I wear them. Kinda like compression stocking but not as tight. It makes me wish I had compression sleeves for my arms. That reminds me to pay attention to my arms. Ugh. I had blocked out the pain in my arms. I have been sitting in this chair typing for almost an hour. That didn't help the arm pain and tingliness. My fingers don't hurt though. Thank you ring splints. I need to get up again. I have to clean the kitchen and make lunch. Please get up. You can do it. The kids are going to be hungry. They will whine. You have to feed them or they will get low blood sugar just like you do. Just get up and do it. I am so tired. I just want to rest for a few more minutes. You don't have a few minutes. Just get up and do an hours worth of work and then you can sit down again.

I did it. I put away the clean dishes, washed the dirties, washed the counter and the table and then made a simple lunch. I feel like falling over. My head feels heavy. I can feel the headache there still. Everything still hurts. I would take tylenol but it gives me rebound headaches. I would take ibuprofen but it makes me feel sad. I am not sure why and neither does my primary. I use icy hot. I rub it into my wrists, elbows, and shoulders. That helps for 20 min or so, but when it comes back it seems to hurt more than it did before. I sit. Don't sit too long. You'll get stiff if you sit too long. Keep moving even though you are sitting. Move your legs. Move your feet. Hold your head up just right. There. The headache lessens. Everything else still hurts. Aches everywhere. I wish I could find a medicine that makes me feel better. Why does all the medicine make me feel worse? I don't need more dizziness and fatigue, I need less. My thigh hurts. It feels like it is coming from the hip on that side. My knees hurt. My wrists. I need to get up and do something. Maybe that will distract me from the pain. Put it in the background. Don't think about it. It is just sensations. Just sensations. Get up an move. Go switch laundry or something. Then you can sit back down again. Please get up. Life is passing you by.

I get up and switch laundry, I even find a load to fold. Towels. It hurts my shoulders. I do it standing. I remember my yoga and hold myself right. Anything to try to keep what muscles I have. I always try to hold myself right. Good posture helps the headaches and the muscle aches, keeps things from getting subluxed. I remember to engage my muscles in my legs. Don't hyperextend. Hold your back right, you don't want to make your scoliosis worse. I'm getting dizzy now. All done. Put them away and go sit back down.

Sitting. I sit a lot. I would prefer to be active, athletic, energetic. I would prefer to deep clean, take walks, play, lift weights, even do the WII fit again. But I am sitting, too tired to get up. My brain is awake though. I get on the laptop and talk to people who have the same issues I do. They remind me to not give up, that I am worthy, that I do feel this way, that I am not making it up and they feel the same way. I push myself. I have to get up again.

I have to organize the dirty dishes and make dinner. Something easy. I made meatloaf and green bean casserole. Very easy. i use my kitchen aid to mix the meatloaf. I let the kid mix the canned green beans with the canned cream of mushroom soup. I let the youngest sprinkle on the cheese. I put them both in the oven. I feel very grateful that I was able to let the kids help without getting angry. I am always so cranky. They like helping cook. I usually just want to get it done with but they actually helped this time instead of making a big mess. It ends up being tasty. I still wish I had been able to make bread to go with it. I miss making bread.

I sit down again. This time it is for the rest of the evening. I sit there for 2 or 3 hours. Just watching tv, playing phone games listening to the kids. I feel numb. Everything seems dulled. My husband says everyone is too loud but I have a hard time hearing them. It seems like I am under water. I feel drunk still. I am so tired. I'm trying to sit upright but I keep sliding over to the side. I can feel my scoliosis. I can feel the rounding. I am scared it will get worse. I have to go lay down. I am scared to lay down. The headache. It gets worse when I lay down at night.

I go lay down in bed. I am sitting reclined. Back is straight, neck curved forward. I can't do this either. So I lay flat. Within a few minutes my entire head starts ringing. It is pulsing. I can hear my blood in my ears with the ringing. I can feel the pressure behind my eyes and in my ears. It doesn't just hurt in the back of my head anymore, now it hurts in my temples, the sides of my head, and it doesn't let up. I can't sleep. It hurts and I can't sleep. It takes forever but I finally fall asleep.

I often wondered if the fludrocortisone made this headache this way. This isn't the same headache I had before is it? It is the same headache. The same way it hurts. The way it changes when I sit up or lay down. The same headache I first complained about 12 years ago. The same neck ache I complained about 14 years ago. The same drunk feeling I had when my vision changed. The same out of it feeling I had in first grade when I jerked and accidentally stabbed myself with a pencil. This has been with me my whole life, getting worse as I get older the same way all my other things did. Another degenerative chronic illness with no cure, just treatments that might make me feel worse.

What do I dream about? Sometimes I don't dream. It doesn't even feel like I was asleep most times. Every once in a while I dream. It might be a pleasant dream, happy and full of smiles. More often it is filled with anxiety and fears. Sometimes, I still get the dreams I had when I was little. The large rolling ball or pencil coming towards me to roll me over. Rolling against my eyes, right on top of me. I am not scared of it, it never gets me, but it just right there on top of me, pressing me down. It feels like vertigo. 

Monday, February 16, 2015

Crazy anxiety.

I am going crazy.

I hate waiting for doctors to call me back. they already don't like me because I go in there telling them what I expect to find and what test I want (it makes friends fast). I am sitting going over the tests results myself and forming my own conclusions. I have read everything I could, compared MRI pictures, researched optimal hormone levels and symptoms. I am sure I am right. Just sure. But unless a doctor agrees with me, it won't matter. And I am scared that I put myself out there and I won't be right. I will have made an ass out of myself in front of a doctor who won't want to help me anymore.

But on the other hand, I have been right for the last 2 years and that is the only reason why we know that me and all the kids have EDS and fructose malabsorption. I knew. I know now. I know that we have, at the very least, intracranial hypertension. I gave all the head circumference info to Dr. Diana and she put them in her study and she said my son, and to a lesser degree my daughters, had sign of it and that to expect I would also.

Do you see the circles my mind is going in right now? I am literally driving myself mad with anxiety. At least I have energy to clean the house, nervous energy.

I just keep coming back to worrying. I can't stop looking up more things on the internet and it just makes me more sure. I have looked at hundreds of normal and partial or empty sella. I compare my current pics to my old pics. I can clearly see that my pituitary is squished. I know I am intelligent enough to learn how to read an MRI. I learned enough to be able to tell what a normal pituitary looks like, what spots are the wrong kind of spots, how to tell where the skull bone is, ans the difference between a herniated chiari and a non-herniated chiari is. I am confident that I know these things.

But what if I'm wrong? Then what is the answer? How will I keep my kids from becoming disabled? My son has already been through several things, several degenerative changes, at the exact same age that they happened to me. He could end up disabled before he has a chance to do something with his life. He will end up like me, living off of the charity of the government, poor and living paycheck to paycheck. Barely affording to live, not enough money to enjoy living. A hell of pain, torment, headaches, nausea, fatigue, and isolation. And then my daughters. It will go the same for them. I feel like I am racing the clock trying to save their lives. That doesn't help with the stress.

I am fighting for our lives, against the clock. I am fighting against doctors who just want to shove any old med down our throats so we'll quit complaining. The ones we kept were the ones who had enough compassion to actually want to help us. Some doctors hear that I have been diagnosed with mental health issues or a drug addiction and just stop right there. They just chalk me up to some crazy, attention seeking, drug seeking, drama queen. They don't want to believe that I feel as bad as I do. They don't understand the courage it takes me to fight against the anxiety and go let it all hang out in a desperate search for some relief. Some real relief. They think I want drugs. I don't need doctors for that. They are everywhere. That is not what I want. I want real physical energy. A real feeling, like I am a real human being. A human being that works out and feels their muscles get stronger instead of just hurting too bad. A human being who can play with her kids longer than 2 min without getting winded and dizzy. A genuinely happy human being who enjoys being alive just for the same of being alive. I don't want to be high, drunk, or stoned. I want to experience life, feel life, remember life, before it passes me by. Then all I will be left with is a life of nothing. Just sitting on the couch, watching TV, a drain on society. I want to volunteer, be helpful, take my kids on trips, and be all around human being. I am tired of the meds the doctors want to give me. Antidepressants that don't make me less depressed (the therapist says I am not depressed). Anti-anxiety meds that kill the anxiety, make me feel high, make me feel hungover for at least a day. A day I don't get anything done, a day spent dizzy and exhausted. Another day I can't do more than the bare minimum for my kids. A childhood wasted. A marriage wasted even. Another day I don't have the energy to connect with him. Another day I don't feel like going to his family's house or hanging out with his friends and their kids. Another day.

Around and around and around in circles. That is where my mind goes.