Sunday, November 17, 2013

The Many Facets...

As my Mom wrote before, everything in my family changed. One experience that I fully remember is when we went on a vacation to Disneyland almost a year after I got sick. Several of my siblings had gotten mono also, so there was major adjustments to the vacation. My parents rented a wheelchair for me, so that I could save my energy by not walking everywhere inside the park. We would go out in the morning, and then we would go back to our hotel for nap time (the non-sick siblings went back to the park with a parent) and then we would regroup again for the evening. I felt really strange riding in a wheelchair when I also had siblings who were sick, and the many strange looks other people gave me when I would get out of the wheelchair to get on rides-- I felt very exposed and felt like I was being blamed by others who couldn't see anything wrong with me.

My family belongs to a church, and this aspect of my life changed also. I did the best in the mornings, with a nap in the afternoon so that I could be functional for the evenings. Having a church meeting starting at 1pm in the afternoon threw all of the schedule off. As a result, my Dad would take me to the 9am meeting with another congregation who I didn't really know. I went to this congregation for almost a year, because it was the only way for me to make it to church and not have problems the rest of the week. I found a certain peace and hope from going to church- rather than seeing all of my problems or limitations and giving up, church gave me hope that doctors or medicine could not give me. I had a really hard time thinking about how PERMANENT chronic fatigue was, how it would almost always be with me. I wanted to be normal-- I wanted the "normal" teenager experiences-- rather than taking naps like a 2 year old. My church is a Christian denomination, and I believe that Jesus Christ not only took my sins, but I also believe with all my heart that he also took my weaknesses, my illnesses, my pain, and that because He also experienced them, I am not alone. This belief helped me so much when I felt so isolated and alone to not give up, to keep trying, to keep falling down when I tried so hard. I didn't feel so alone when no one else could understand how I was feeling, either physically or emotionally.

Another part of the chronic fatigue experience was the mental health issues that can come from being physically sick so long and also the lack of hope of getting better.When I was a teenager, I had to take the one-day-at-a-time view, and that helped. Still sometimes I didn't want to do anything, because to me, what good would it do? I found a few ways that helped me a lot-- including soccer (I loved it), doing activities that I felt that I could succeed at, and having a best friend who was there for me the whole way. This best friend and I have known each other our entire lives, and we have helped each other through a lot. She made me feel like I hadn't lost myself, and she told me many times how proud she was of me, which made me feel like I was doing something right. It is something that I still have to be very aware of. It is something that my doctor checks in regularly with me, because it is such a struggle to continue with life while feeling to a certain degree that this is not the life I am "supposed" to have. I have had certain times when I have looked back to before I got sick, and it is scary because now I have a hard time remembering what it was like. I try my best to not only understand and track what my physical body needs, but also paying attention to my emotions (happy, sad, depressed, angry, optimistic, hopeless, tired, etc.) and adjusting what I do accordingly. I don't know if I will need medication but I have it as an option to help me if I need it.

Friday, November 8, 2013

November 8, 2013

Family Adjustments

One of the things that stands out from Maddy's earliest days with chronic fatigue is that we made a leap backwards in time. Agewise, our family was well beyond the baby/toddler/nap stage. Since she was sleeping for hours every afternoon, all of a sudden I was shushing the other kids when they got home from school when they were just being normal, noisy teenagers. That made me feel sad, and also annoyed. Why couldn't they remember that Maddy was asleep? It just wasn't on their radar, despite living in the same house with her. And it didn't seem fair to have them constantly muzzled when they were just being normal kids.

Another adjustment that was challenging was family vacations. As a family, we usually went the camping route because it was more affordable, and because our family enjoys the camping/hiking experience. We had a joke that it wasn't a vacation unless we got lost at least once while hiking. It was something the kids had grown up with and looked forward to. Now we were faced with Maddy's physical limitations. It came down to careful planning, and doing the divide and conquer technique that all parents of more than one child employs at some point. Sometimes she just wasn't able to participate, so one parent would stay at camp with her. Sometimes she was able, but not at the same pace or duration as the other family members. Then one parent would hike with her, keeping in mind that we had to turn back BEFORE she was tired out. We really had to rely on her to gauge her energy level, and we had to believe her when she said she'd had enough. As parents, it was an ongoing learning curve to deal with Maddy, and be continually reminded that we often didn't know what was best for her, and had to consistently seek feedback from her.

One year we were revisiting a camping spot that had a trail to some waterfalls. Maddy had hiked it before getting ill, and was really motivated to see them again. The trail was over two miles, sandy, and gently up and down. I wasn't sure that she could do that long of a hike. She hunkered down and saved her energy for a couple of days, and was able to do the hike, going at her own pace and resting when she needed to. It trashed her for the next two days, but she was pleased that she could achieve that goal. That was another thing that we had to let go of: deciding what to expend energy on. So much of her energy was invested in just getting through the days, and therefore her life was pretty boring most of the time. The opportunity to do something fun and different was often worth it to her, even if it took a lot of energy.

Sunday, November 3, 2013

One Day at a Time

November 3, 2013

As I look back to Maddy's high school days, they are mostly a blur. It was mostly the same routine day after day, with small variations determined by her health. In many ways, it felt good, because there was a system in place that allowed her to succeed, though sometimes with extraordinary effort. It was mostly predictable: get up, go to 1/2 day of school, I pick her up, go see Grandma in the nursing home, come home, eat lunch, Maddy naps for 3 or 4 hours, gets up, does homework, repeat, repeat, repeat. I had no real idea of what the long term view of chronic fatigue, and then fibro, meant for her. I didn't know what to expect for her after high school. All the people I knew that had chronic fatigue were adults, and most of them were quite limited in what they were able to do. The one teenager we knew of was the daughter of Mrs. I, the counselor in the middle school where Maddy attended. And her path included a full school schedule and medication to increase her energy so she could keep up the pace. We later found out this girl did not do well long term with this approach.

So I coped by not looking too far ahead. The 'one day at a time' approach helped me to just deal with reality. It was late in Maddy's senior year that I got a great 'birds eye view' of what was going on. It was when she got a full tuition scholarship to the local community college. They liked her grades and test scores, and just assumed that she was graduating! That really opened my eyes to possibilities for her! I was very excited for her! What a wonderful boost to her self esteem. It confirmed to her that all the hard work she had done in high school was worth it.

I was pleased that the scholarship was to a local college. At that point, I didn't know if Maddy would be able to have the physical energy to live away at college. This seemed to be a great way to test the water and let her get into the college rhythm, and see how she did. I am really grateful that she could do this transition in stages, both for her sake and for mine. Since so little is known about chronic fatigue, her doctor really couldn't give much practical advice. And I tended to be quite cautious in my approach to new situations. Maddy was a bit more adventurous, but still took things slowly.

That senior year was rough in several ways. When she started having fibromyalgia, the constant pain really wore her down. And it took away something that she had enjoyed: soccer. Amazingly, she had been able to play recreational soccer through most of her chronic fatigue. She had to adapt her playing style, as she had to do with most things. She became a defender and relied more on strategy than speed. She was able to block balls and really contribute. It also exhausted her for a couple of days afterward, but the mental high made it worth it to her. But when fibro struck, all of a sudden soccer was not fun. It was excruciating when a ball hit her. She reluctantly had to drop this sport and she really mourned the loss of it.

Friday, November 1, 2013

High School Continued!!

Ok, the last post I said that great teachers helped get me through high school with some sense of accomplishment. This post continues my high school years, because I had a BIG learning curve, not only in academics, but also in saying NO and NO THANK YOU.

In my senior year of high school, I was doing pretty well and I decided to take a weight training class- the first weight training class that I had taken since 9th grade. I was doing well, mostly because the teacher was able to accept the flexibility that I required to take the class. Some days, I would change into my gym clothes and I wouldn't work out. A few times fellow classmates made comments which weren't the nicest, and the teacher promptly shut them down. He made it clear that I was in charge of myself, and that there would be consequences if they didn't accept that. However, partway through the class I started hurting- everywhere, no breaks, and it didn't go away. Soon walking was a problem, it was so painful to move. I went into the doctor where I was then diagnosed with Fibromyalgia--lucky me!! It was so hard for me to get around to do anything. I started learning how to live with pain. I dropped the weight training class as soon as I could, but in the meantime the teacher let me do whatever I wanted. He never criticized me, made me feel like my best wasn't enough, or made me feel unwanted in his class because of more health problems.

As a result of my Fibromyalgia, I was staying at home a lot, and missing school. The school had an attendance policy where if you had more than 2 absences from a class, excused or unexcused, you had to pay money and attend attendance periods. I was missing a lot more than 2 days, and when I did make it to school it was a miracle. My teachers were really good at working with me- by this time, the process of educating my teachers was a lot better and there was backup from my previous teachers. One day, I went into the attendance office and was informed that I had to make up my absences, even though my Mom had called and excused me. The vice principal kept insisting that if I wanted to graduate (which I knew that I wasn't), I had to make up my many absences. I finally had to get my Mom involved, and also the school counselor who knew me well by now to get the vice principal to back down and leave me alone.

I had to get good at getting adults to speak to other adults since I wasn't believed by myself. An example is when I had made it to my classes for the first time in weeks, and there was a school assembly that was going on after my classes. When I tried to drive out of the parking lot, the school cop was blocking the exit and refused to let me leave even when I told him that I had no more classes for the day. I told him to contact previous teachers or my school counselor on his walkie talkie, which he did. The cop passed on my name, and that I was trying to leave. My former teacher, Mr. H was on the other end and his response was "let her out, damn it!!" I was able to get out, and will forever remember the look on the cop's face when this happened.

The yearly testing came around, and I still wasn't doing very well. Walking hurt, and stairs were either impossible or really time and energy consuming. The school counselor told me that in order to get ANY credit for the math class that I was in, I had to take a test (it was for funding purposes). I hadn't been to class in a while, and it was communicated to me that the test was of greatest importance. My math teacher's room was upstairs, so I made arrangements to take the test on the ground level. Everyone I talked to was really confused why the stairs would be such a big deal. I literally shuffled into the office where I was going to take it, and my counselor almost winced as she watched me come in. A light almost flicked on, and I was given the test, which I started. However, I couldn't think very well since fatigue+pain= no brain. Soon I wasn't even looking at the questions, it was such a lost cause. Holding the pencil to fill in the circles was also really painful. By the time I shuffled out, my counselor was really sorry that I had to come into school JUST to take a test when I couldn't even make it to class.

Also during that time I was nominated for being such a good student in a certain class. I got called down to the principals' office to help encourage me to keep doing well, along with another dozen students. It was during the time that making it to school was a big victory for me. I made my way (slowly and painfully) to the principal's office, where he then went on how we were all great students, keep up the good work, all of you will be graduating, the improvements on his golf game, etc.. I interjected that no, I was not allowed to graduate and that I hadn't been in class for a while, and that he was wasting my time and if I could leave to go back to class. His jaw dropped, along with the other students in the room. I then shuffled my way out of his office, with no response except sheer shock. Before I got sick, I wouldn't have done this at all. I was really quiet, went with the group, and wasn't that blunt. This assertiveness was a part of me that came out when I was in trouble, and helped me deal with the unnecessary stuff that was thrown at me.