Thursday, January 29, 2015

Whiplash. Neck Strain.

It has been a dizzy few days for me. Saturday was a good day. I had some energy. I had turned on the radio for some extra motivation. I was determined to clean the house no matter how bad I have been feeling lately. I had some Diet Pepsi and taken all my meds. It was going great. I was beebopping along, washing the dishes, cleaning the counters, scrubbing down the table. Then A great rock song comes on, one that people like me like to headbang too. I have been known to really get into the music. Well, I forgot the no headbanging rule and I went to town. I got carried away and I was really enjoying myself. It had been years since I had done that and as soon as the song finished I was reminded why it was against the rules.

I felt like a bobble head. Literally. My neck would not hold itself up. I had stretched and strained all my neck muscles in 3 minutes. At first everything was numb and it felt like my neck was not connected to my head. If I tilted my head at all it would just fall. No support from the muscles. This is a big deal because I already have no support from my tendons and ligaments due to the EDS. I immediately sat down so that my high back chair could support my head for me. At this time I realized that I do not have a neck brace and I really needed one, especially for the next day when the muscles would be all sore and I would need to take muscle relaxers. I was afraid to take them without a brace to support me.

I woke up the next day to some very sore muscles. The whole back of my neck and halfway up my head was screaming at me for being so stupid. It hurt halfway down my spine and over the tops of my shoulders. It was Sunday and the only place open who might be able to give me a neck brace (without resorting to the ER) was urgent care. I got in right away and the doctor said I definitely needed to wear a neck brace for a day or so and to take my muscle relaxers. I told him that I just needed a brace, I had the other stuff at home already. Apparently, it is now illegal for them to stock braces in the clinic and I need to go get one at a medical supply place. Apparently, the only place I could use my insurance to get one was 50 mi away. Apparently I would need to pay out of pocket for one. Good thing it was only $14 but that still took money out of my gas fund for the week. Ugh. I about started crying on the phone with the insurance people.

I finally found a local place to buy one and put it on right away. The pain relief was amazing. I wore it the rest of the night and all night while I was sleeping. I took muscle relaxers all day Monday hoping to ward off a longer recovery time. I napped most of the day with the brace on. By Tuesday I was feeling all right but still a little sore. I could hold my head up myself so that was progress. I took off the brace and went about showering and trying to get something done. I got about as far as a shower and feeding the kids.

Wednesday was the day. Most of the soreness was gone. I got up early, showered, ate, took my pills, and started drinking Diet Pepsi. I was determined to get the dishes done that had accumulated while I was down. I am going to take this moment right here to complain about how no one thought to do any of this for me while they could see how down and out I was. I suppose I could have asked but I would have just gotten attitude about it. Why would they do my job for me? But that is an ongoing frustration for me. No one in my house ever wants to help me keep the house clean and I feel like a maid. A disabled maid who gets whined at for daring to think that they could at least pick up their dirty clothes or the crap they were playing with. You know, the bare minimum.

I got the kitchen cleaned, again while listening to music and remembering the rule to not headbang. I cleaned the counters and washed the table. I drank Diet Pepsi for energy (because coffee, green tea, or B vitamin supplements don't do it for some reason) and sang along to some good old rock and roll. I washed 4 or 5 loads of laundry and folded 3 of them. I had a shower and brushed my teeth. I even changed the cat litter. I made an easy dinner and then just about collapsed. I wanted to just sit in my chair for the rest of the evening being a lump but I had an important meeting to go to at church. My UU church offers a class for students called Our Whole Lives. I love this program. It covers sex ed and appropriate relationships. I can handle sex ed but I am damned when it comes to teaching about appropriate relationships, because I have no clue. My relationship is obviously dysfunctional although we are extremely committed. So I had to drive there, sit in the parent orientation, pay attention, try not to stick my foot in my mouth, and then drive home. I was so exhausted that I only stayed awake for an hour before falling out. I was really glad I had gone though. I hadn't been able to go to church for awhile because of the increased fatigue. I missed my UU friends. I miss church.

Today is Thursday. The older kids have gone to school, the husband has gone to work, and I am home with the younger 2. The preschooler has school today. Thank goodness she doesn't have to be there until noon. She already missed 2 days this week because I couldn't drive her and I couldn't get a hold of my dad to take her. I need to take her today. As I sit here I can feel the exhaustion from yesterday claiming me, telling me to go back to sleep, to take a nap, but I can't because the kids need breakfast. I need to drag myself through another day. I have 2 loads of laundry to fold, clean dishes to put away, another load of towels to wash, and kids to feed and dress. It is cold and windy outside and it makes me feel tired and in pain.

How do I make it through another day? I feel like I have a heavy weight pushing down on me all the time. An inescapable burden. The caffeine goes to my head. I can feel my brain pick up and my heart start to beat faster, but my muscles have no energy. 

Saturday, January 24, 2015

Daily Diary

I am just going to start posting daily. Like a diary of my daily struggles. What was bad and what was good. To remind me that there are some good things in my life.

I have noticed that every time I get used to the fludrocortisone that I started getting bad again. I have started getting mean again and I hate it. That is  not the kind of mom I wanted to be ever. I have been taking time out to help me center myself and regain composure. I don't want to cause more health problems for them by over-activating their fight or flight. That could cause them more issues there.

Yesterday wasn't too bad. I got up in the morning and drug myself through the first few hours. I made breakfast and took my pills. While I was sitting down and waiting for my pills to kick in, my husband called and asked for my help. His truck was broke down out of town and he needed me to come get him so he could have it towed to the shop.

That woke me up. It was an emergency and apparently it kicked in my hormones or something bc I was wide awake and more energetic. I still struggled to get the kids dressed and out of the house but I felt good. We got there and I sat in the van while we waited for the tow truck. Everything in me was fine. Very little pain. We finished up and got home several hours later. I was tired but still keyed up. So I used that to do the dishes and wash the table and counter. I even washed and dried several loads of laundry. I made dinner. I put away left overs and then I started crashing. I felt like there was a weight pushing down on top of me. I didn't feel dizzy. I felt irritated and angry. I hated everybody and how the never help. Look at all I did and they just sat there and did nothing. My thoughts were getting increasingly agitated and out of order. I used my many years of therapy and the control gifted to me to stop myself and go to my room alone.

Unfortunately, nobody would leave me alone. It was one kid after the other coming in to bother me. I had went to my room so that I couldn't hurt my kids. I was so tired and just wanted to relax. I noticed the old verbally abusive me (not the real me, i slowly became this person within the last few years) coming out. I was yelling get the fuck out and leave me the fuck alone. I had to stop myself. Finally my husband started putting them to bed. I thought maybe now I can just relax. Well, since the kids were asleep he decided he wanted to come to bed with me and watch my show with me. At first I was irritated. But he laid so still and cuddled me just the right way. He feel asleep right next to me. It was so sweet. And finally I felt calmer. Finally, i wasn't keyed up anymore. I shut off my movie and went to sleep with him.

It was the best nights sleep. All my kids stayed asleep and in their own beds. I feel rested this morning. Well, as rested as I usually feel which isn't very rested.

I just have to hold on until Feb 6th. Then I get to see the endocrinologist. Maybe he can fix me. I desperately need to be fixed. I want to be the calm loving mother I was all the time. I don't want this overtired bitch ruining my delicate kids. Their endocrine systems are delicate too. 

Thursday, January 22, 2015

My downward spiral.

Have you ever been so tired and uncomfortable that you could sleep for a week? I have slept for weeks at a time. I have had at 4 or 5 major episodes in my life since I can remember. The first one when I was in elementary school, 4th grade maybe 5th. I called myself in sick for several weeks. Skipped school to stay in bed sleeping or watching TV. Exhausted. Bad stomach and hip pain. Took an xray where I had to swallow some chalk liquid. Never found anything wrong.

There were several small times in high school. I would just sleep all weekend.

There was the time when I left my ex-husband because he had been beating me. There had been many occasions where he had sent me to the hospital. The first time he had been beating me in the head. They said that if I had been hit one more time in the head I would have been dead. Another time he had broken my jaw. The very last time I had suffered bad hematomas to every major muscle group of my entire body. As soon as I got out of the hospital I took our baby and left. I hadn't hardly slept the whole year and a half we were together. When I finally got to my grandma's house I slept an entire week while she took care of my baby. I couldn't do anything else.

Then I was living with my ex-fiance. It had been going good for a year. His kid and my kid lived with us. I was working and I felt great. I cleaned house, cooked, went out together, took the kids places, and even helped him with his business. I found out I had gotten trichomoniasis. At that time I was told it was something that just happened. I now know that it is a STD. Then I got sick. I don't remember getting a stuffy nose or anything. I just felt huge body weariness. I couldn't stay awake. Then my neck started hurting really bad. I couldn't work. It felt like I had the flu. I went to the doctor who prescribed medication after medication. It messed me up so bad that I ended up in a psychiatric hospital because I couldn't stop crying. I now know it was because of all the medicines. I recovered a little but then we split up. He moved me out while I wasn't home. When I got to my mom's house I was very tired. Exhausted. It took everything I had to move my stuff and I needed my friend's help. I kept getting more and more tired. Eventually I crashed. I slept for an entire week. I couldn't get out of my bed except to pee. Even then I was unsteady on my feet and I felt drunk. I was very out of it for an entire week. Thank goodness I was living with my brother who helped me take care of my son who was in first grade. After that I got better slowly and went back to work.

Which brings up to the next time. I had been at the job for almost a year. It was a desk job. I answered phones and sold phone services. After awhile my neck started to hurt. It got so bad that I couldn't move. I had to quit my job. I couldn't get out of bed again. My son was in 3rd grade. Again he was taking care of himself. I could only get out of bed to pee or get a drink. I started having bad migraines. Once again doctors tried meds. I had migraine meds, amytriptyline, muscle relaxers, wellbutrin, and a few other things plus constant ibuprofen and Tylenol. The way they just let me suffer through the pain of the migraines and my neck without giving me pain meds was ridiculous. But I had a diagnosis of fibromyalgia. The next few years were rough. I was disabled. There would be no more working for me. I couldn't even take a shower most days let alone feed my kid. We were still living with my brother though.

Over the next 5 years I tried everything they wanted me to in order to get better. I did their water physical therapy. I saw a therapist and went to a mental health group. These five years were when I had all my dental work done. One after the other all my teeth became infected. They all needed root canals and crowns. Some needed pulled. My gums were very infected and I needed major help. I am lucky. I didn't end up with dentures. My dentist is awesome and did his best to let the 28 yr old woman keep her original smile. I even ended up with a whiter smile because of the crowns instead of the permanent yellow color they had been before. I think battling these infections caused the overwhelming fatigue. Once it was under control I started getting better, but never as good as I had been before. I was able to start cleaning and cooking again, visiting friends, and being with my son. During this time I met my now husband. I was able to do everything but work.

Then we had a baby. The whole time I was pregnant and had a newborn, he was gone. He would stay at friends houses after work and get drunk. He was hardly ever home and when he was he was drunk. We stopped having fun together and I started to resent him. Every time he didn't come home I would get real upset and have panic attacks and cry myself to sleep. I would feel dull for days afterwards. I will always be resentful of how this affected my pregnancy. It got better after she was 2 months old. We were given custody of his older daughter by the state. They were involved and monitored my husband's every move. He had to be sober. It was the best part of our relationship ever. He was emotionally available, home, and helping with the kids. I recovered again. Mostly. Until the court case was over and he started doing his stuff again. I was upset a lot but I could still handle the kids and house. I even got pregnant again, on accident. Slowly over the years everything got better, but I am sure the stress of living with an uncontrolled alcoholic was just as damaging as my abusive ex husband because of my existing PTSD.

Here are the good years. I cleaned house, figured out medical problems, started the FM diet, got the EDS diagnosis, was doing yoga at the YMCA, lost 30 lbs, had no infections, read my kids bedtime stories, and was active at their school and started church. I would get tired in the winter, but I could still make it to church and do my work. Then I got pregnant with our last child. The pregnancy went well even if their were some stresses. My husband had to have eye surgery. We also had some very stressful moments over our sex life that started some bad fights. We had had long term issues with what I wanted out of a relationship in terms of emotional availability and they came to a head towards the end of this pregnancy. I was still doing well though. I gave birth to our son at home. It made my husband happy, It was the first son he had fathered. It seemed to help him to get better and he has become more emotionally available. There was very little stress in our relationship at this point. I was cleaning house, breastfeeding, cloth diapering, making homemade bread, following our diet, doing yoga and bodyflow, swimming with the kids, camping, walking, going to church and being active in the Sunday school even attending meetings. I even went to Chicago for 3 days with the youth group. I walked for days and felt energized when I got back home. I lost the baby weight again, an entire 35 lbs. My hips weren't falling out of socket and I had more energy.

I finally decided that I was done trying to use birth control. I went in to get sterilized. I had already lost one tube to ectopic pregnancy. Getting my other tube tied carried the risk of another ectopic and it maybe undoing itself. So I asked the Gyn to just remove the other tube. Recovery went well and I was back on my feet within 2 a few days. I still had to take it easy for 2 weeks because of the EDS. I didn't want to rip anything open.

My best friend and my grandma died within 2 weeks of each other. It was very hard and i grieved very hard. But still I felt good. I spent the next year helping to clean out her house. I had the energy to do that and to run my own life and clean my own house.

A few months passed then I started getting more tired again. I couldn't control my anger. I started snapping at the kids and calling them names. I walked around the house acting like an angry alcoholic but I wasn't drinking. I had weaned my nursling months ago. It seemed like everything anybody did felt like they were doing it on purpose to hurt me and cause me pain. It wasn't overwhelming but it wasn't nice for anybody living with me. I thought I was just stressed out. There were upsetting things happening at church and I thought I was just sad about them. I stayed home and tried to rest while doing housework. I could still walk the kids to school but I found myself yelling at them all the time. They started getting depressed and stressed out.

I didn't know I had an infection. I had no fever, no pain, and no nausea. One day while having sex with the husband, I heard a pop and felt a gush of blood run down my vagina. It was messy like I had started my period. Even then it didn't hurt. I made an appointment with the gyn. By the time I got there I was dizzy and weak. I felt drunk all the time. I couldn't think straight, I couldn't walk straight. I was a mess. I shouldn't have been driving and I barely made it to my appt. I felt so bad I almost went to the hospital instead.  They did a vaginal ultrasound, didn't see anything, and gave me doxycycline. She said that it was most likely an infection and to take the antibiotics. For the next 2 weeks on the meds, I couldn't get out of bed without feeling like the town dunk. I slurred my words, ran into walls, stumbled around, and couldn't see very well. When I finished the antibiotics I thought that was it, I would feel better, but I didn't. My heart was doing funky things and I still felt drunk. I gave it another week until I got scared and went to the ER. I thought I was having a heart attack or the infection had come back.They found nothing wrong. They did blood tests, ultrasounds, abdominal cat scan with contrast, and a chest xray. They even tested for VDs and other infections. Nothing. Went to the cardiologist the next week. Diagnosed with neurocardiogenic syncope. I still don't know what caused the infection.

Since then my heart does funny things. The fludrocortisone they gave me got rid of all the personality changes though. I am forever grateful for that. I am not treating my children badly anymore. I have patience for them and talk to them. I still can't do much though. I still can't read them bedtime stories or walk them to school. I can barely do any housework. I have to choose between laundry and a shower. I can't put away clean dishes and then wash the dirty ones. I have to do one job one day and the other job the next day. Even then I will go a whole day doing nothing in between. Today I have done nothing really. I washed the pillows for the kids and dried them, made breakfast for the 2 younger kids, and called to make an appt. I didn't take the preschooler to school but I did call my dad and ask for help. I am more than just tired. It is like my muscles refuse to work and when I do get up, my heart rate picks up and I get exhausted that way.

I keep the hope that I will recover from this too. That with the warmer weather I will feel better and be able to go back to church and yoga. But I keep remembering last summer and how i was yelling at my kids. I am afraid there will be no getting better this time. Maybe this is my better after the infection. That thought leaves me paralyzed with fear. I had dreams of what it would like to have kids. Fishing with them, talking to them, walking with them, teaching them all the mysteries of the world. All they are learning is how to live with a chronically ill mother. 

More tests for me and my kids.

Usually I hate getting tests done or blood drawn, however I have come to love it. The more test I have done, the more I learn about what it is I am dealing with. The more I learn about myself, the more I learn about my kids. I worry about them so much.

My kids are just like me. They have the same issues and act the same way I did when I was a kid. The genes aligned in such a way that all my kids inherited the EDS and FMS. I am sure it is because I got it from both of my parents. I can see it in both sides, from my father's mother and my grandmother's father. All I need to do is look at family pictures and I can see the physical traits. I can't stop researching everything. I need to know more. I ask questions about family health history and do more research. I need to find to out how I can help my kids to not feel like I do. I am suffering and the last thing I want for my kids is to suffer.

So more tests. It has been shown that my 7yr old also has symptoms of orthostatic intolerance. After just 2 weeks on fludrocortisone she felt better. She commented that she didn't know that it wasn't normal to feel spacey and dizzy until it was fixed. She says that it is easier for her to listen in school and to do the whole gym class as well. She is too young for a tit table test. The cardiologist just went on family history and symptoms. I just wish she had the energy to do her homework too.

I refuse to believe that our overwhelming fatigue isn't caused by something else other than EDS and FM. Lots of EDS people don't have the kind of fatigue that makes them unwilling lumps on the couch. Many of them lead lives and do stuff.

So more tests. Either we are just doomed to a life of suffering and pain, or there is something we can correct that will allow more quality to our life. Maybe my children will be able to finish college and contribute to society, support their families, and be happy. I am none of those. Maybe these tests will provide data to help other EDS'ers who have the same problems. Maybe I will contribute to society. This is how I could do it. At the very least I need to make sure my children's quality of life stays at a level they can live with.

We are so close to the end of the tests and specialists we can see. Please let there be that one more answer that will restore some of my functioning. I am not asking for much. I just want to be able to do basic household chores, help my kids with their homework, manage their conditions, do the shopping, go to church things, and have the energy to go to yoga, swimming, or walking with my kids. These are the things I was able to do before this last set back, including making homemade bread and sewing clothes. Most people have a full time job on top of that plus many hobbies. I am left with a few chores a day, either putting away clean dishes and stacking dirty ones or washing dirty ones and cleaning the table and counters off, washing and drying a few loads and shoving just my own clothes in my drawers or taking a shower and brushing my teeth, and driving the youngest to school or do the grocery shopping. I have to sit down after just 10 or 15 minutes. I get so body weary and I just can't do it. I don't want my children to feel like this. So more tests it is.