Day 240 - It's Not Just My Effort that Counts

Last Night it took me three hours to write my blog. I had a really bad day and night and stringing words into sentences was enormously difficult. I'd write a few sentences then erase them. I'd write a paragraph then put my head down and rest a while, then start again. I erased about twice as much as I finally posted. I re-read yesterday's blog just now and it didn't even make sense. I didn't feel like writing but I write even when I don't feel well because I made a commitment to myself to write every day for a year. I wanted to chart my journey as I sought out strategies to manage my fibro. I probably shouldn't have gone back and edited what I wrote yesterday, but I couldn't leave that jumbled mess out there to be read by anyone else. I have been consistent with my blog entries and haven't missed a single day, and there were days that I could barely write, but I got it done.

 

I feel good that I have been able to meet the challenge of writing every day for the past eight months and follow through on the promise to myself. I believe that there are certain people that will always rise to a challenge. I don't know if it's faith, a strong will, optimism, pride, a high degree of internal motivation, a desire to please loved ones, or maybe a desire not to let those loved ones down. Maybe it's all of those things and maybe it's something else entirely. I don;t always know what drives me, but I have never shied away from meeting a challenge head-on and when I achieve a measure of success I feel good about myself. I love to work hard and I love to set my mind to something and plow full steam ahead into it. Working hard and not seeing a difference in my health has been one of the most difficult aspects of living with fibro and fatigue.

 

From the time I was young, I was a go-getter and loved to be involved in whatever was going on whether it was in my personal life, my school life or my work life. Family and friends have always been enormously important to me and I have been dedicated to making meaningful contributions to those relationships. At work, I have always willingly given one hundred percent and I have welcomed challenges that stretched my skill level and expanded my understanding.  Now, I clearly see that things have changed. I don't have the energy to dedicate myself to what's important in my life. It is really hard for me to accept the level of limitation I've been experiencing lately, especially since I see such a big difference between the way I'm doing now, compared to just a few years ago. This is not good. The biggest frustration is that my effort doesn't make this better. I am living with a chronic condition that I can't change. I can be a go-getter with managing fibro, but until fibro decides to cooperate, there's not much more I can do except to bring the same focus I have brought to every other challenge I've faced.

Day 239 - Young at Heart is Not the Same as Young

It feels great to be young and full of energy and endless possibility. When I was a college freshman I was burning the candle at both ends. I was a commuter student and worked on weekends at a large post office that offered a work program for college kids. I had to be at work at seven in the morning and I finished at 3:30. I was going to class five days a week and had a very active social life. I had twelve-thirty curfew so of course I pushed that right to the last minute and then got up the next morning at six so I could catch the six-thirty bus to get to work. In March I finally got a car so I could leave the house a few minutes later. I felt like I had been given a priceless gift to be able to sleep just a bit more. I was hospitalized twice that year, but nobody ever suggested that I stop pushing so hard. I remember being so tired during that year that I felt sick, but I got up and went to work every weekend and five days of classes for all four years of school.

My senior year of college stands out as one that was filled to overflowing with responsibilities. I did my student teaching for a full semester in an experimental program. While I was teaching I was also carrying nine credits and went to class on Mondays and Wednesdays. I was still working every single weekend because that was the only way I had any money. I was a class officer that year and belonged to a sorority that did a musical performance in the spring that involved weekly practices. I was engaged and planning a wedding without any help from my parents. I was so busy I barely had time to breathe. But I kept on pushing. Nobody said to slow down and I saw no way to stop the insanity. To this day I do not know how I had the energy to accomplish what I did - I can only challlk it up to the endless energy of youth. It is no surprise to me that throughout college I had frequent bouts of IBS, and migraine headaches. I was sick often with one thing or another but I was so determined to live my college life that I ignored as much of my medical difficulties as I could.

During those years my parents were disengaged, my home life was chaotic and disrupted and my mother and father barely noticed the negative impact of my lifestyle. These were the days when my fibro took hold and I was put on the path of challenging health issues. I remember the fatigue and the aches and pains. But back then I had the advantage of youth on my side and for better or worse, it got me through. I've always had a high energy personality and I have been ambitious and excited about all aspects of my life. I don't like having bouts of low energy. As I get older, my energy will naturally fade and adding fibro and chronic fatigue to that eventuality is sobering. But there is no natural process that can dim my spirit or keep me from being young at heart. I have to respect my body and its limits and for sure I don't have to burn the candle at both ends the way I did when I was young and filled with the energy of youth.

Day 238 - Recovery is No Easy Trip

In the late summer, I began treatment for my fibro at an office quite a distance from where I live. At first I didn't mind the idea of the drive - the weather was good and I was pretty familiar with the roads. Years ago, when I was working as a consultant, it was not unusual for me to rack up thirty-five thousand miles in a single year. I love to listen to music while I drive. I remember one very early morning, on my way to work, driving down a highway, singing at the top of my lungs, to a great rock and roll song. It helped energize me and it made the drive more fun. When the police officer pulled me over for speeding, he mentioned that he was not pleased with the fact that he had been following me for two miles, lights flashing while I was bouncing around in the seat, car dancing to the music. I didn't argue - I took my punishment and my points, as well as the hike in my car insurance rates for the next three years. 

Since I love driving, I put the thought of not having the energy to do the heavy driving out of my head. I figured my music would help keep my energy up. Once I realized the music couldn't possibly energize me enough to get back home, I would leave my appointment and take a nap in my car before I got back on the road. After a while, I dreaded the drive, even with a nap, my favorite music playing, the sun shining and the leaves changing. It took an hour and forty-five minutes (without traffic) to get to the doctor's office and up to four hours getting back home. No matter what time I scheduled my appointment I had to deal with commuter traffic, heading one way or the other, through the boroughs of New York City. The Cross Bronx Expressway was just named one of the ten worst roads in the USA. That road backs up if somebody sneezes. And when it backs up, every road that leads to it gets backed up too. That was the most direct road to my doctor's office. The alternate to the Cross Bronx still had tons of traffic and was much less direct, so what I made up avoiding the bumper-to-bumper traffic I lost in distance. There was no way to make it easier. Heavy stress.

I was very upset when the fibro center I was going to, out on Long Island, unexpectedly closed. I was thrilled that I could stay with the same doctor but her office is in Manhattan, so I am still not thrilled with the effort it takes to get comprehensive and excellent treatment. Granted, it is easier to get to my appointments when I don't have to do the driving, but it is still a very full day when I go in for an appointment. And, although it is less stressful taking the train and I can nap if I need to, compared to driving, my trips to the doctor have turned into a really expensive commute. My trip to the doctor today cost $66.00 between the cabs and the train, and that doesn't include having to buy lunch and a small snack on the way back home. I am in a protocol that involves six visits in a row - that's six weeks at $75.00 a week. This is all on top of the cost of my treatment. I keep telling my hubby that it makes me nervous that this is so expensive and he keeps saying it's worth it. I hope it is. I guess I have to invest in these weekly trips - whether by car or train, recovery is no easy trip.

Day 237 - Making Plans and Keeping Them - A 50/50 Proposition

 This morning my hubby came in to kiss me goodbye and said that I should think of something fun to do this weekend. Since I spent last weekend on the couch, and we barely had a conversation for those two days, I am up for that!. I've been thinking about what I might like to do - a movie and a quick dinner? Maybe the local restaurant that plays music during dinner? Or maybe a drive to the mountains and that pretty little restaurant buried deep in the woods? Maybe we could take a ride down the shore (as we say in NJ) and check out the beach in early spring. I'm not sure yet what I want to do, but my hubby wants something for us to look forward to. I think that's a fine idea. It's good to look ahead and see something wonderful looming in the distance, whether it's a birthday celebration, a holiday, a visit with a special friend or time with family, it's all good.

 

There is real value in living in the moment, but there is also something delicious about knowing something good is coming up. I remember as little kid looking forward to what was coming up next. The clock on the classroom wall seemed to stop dead when I was looking forward to being with my friends after school. I was hardly in the moment. Then as much as I couldn't wait for the school day to end, I felt like the summer was endless and I could barely wait for the school year to start. Whatever I was doing, I always had my eye on the next possibility. Maybe that's just part of being a kid. As an adult I tend to keep those anticipated events on the back burner as I pay attention to my day. In the moments when the thought of an upcoming event pops into my head, I feel uplifted and energized. When I am looking forward to something that I really want to do, I used to think that I shouldn't let myself get too excited just in case I wouldn't be able to follow through and I would be disappointed. I've changed my mind.

 

It's fun to anticipate an event and looking forward to it is sometimes as much fun as the event itself. There have been lots of changed plans, living with fibro. But when it comes to really big events - like weddings and times when the kids are involved, I seem to find the energy to attend and have a great time. I suspect that I just don't build up enough momentum and anticipation for something as routine as a night at the movies. There have been times I was smack in the middle of a fun time and I had to leave because I felt the energy drain right out of me. I've learned to make a more graceful exit than I used to, but those times have been disappointing. There isn't a rhyme or reason to what I can follow through on and what I can't. As I look ahead over the good things coming up over the next weeks and months I am going to enjoy the anticipation and accept the decisions I have to make about doing or not being able to do what I've planned.

Day 236 - What is it That I Miss Most?

I was thinking today about what might be the one thing I miss most in my life since I've been laid low by this condition. Most things in my life I have adapted or adjusted so I don't think there are many things that have totally disappeared, and for that I am grateful. Fibro has not limited my capacity to love or dream or imagine. It doesn't keep me from praying or meditating or re-framing things so they a have a more positive spin. Chronic fatigue doesn't keep me from dancing in the kitchen on my better days or walking through a flower-filled park in the middle of spring. I can still sit on the beach, take a train into the city or a drive to the mountains. I still am surrounded by people I love and care about and who care about me.

 

I can still read a good book, page through a favorite magazine or listen to music. I have new favorite shows on TV because of the time I spend resting and I have learned to browse the on-demand movie list in record time. I can still go to work and be productive. My work has changed and I am feeling very good about the direction it has taken. I travel less and that's just fine with me - I can think of myself as more of a home-body. The fact that my responsibilities have changed means that other people can step up and challenge themselves in new directions, too. I have new hobbies and I can sit at my computer or prop up my laptop and explore anything that suits my fancy. My super-specs allow me to use my eyes in ways that were impossible before I had the right diagnosis for my vision. I can go to lunch or dinner and I can go to brunch if it feels to early to go out for breakfast. I can treat myself to an afternoon at the hair salon or get a massage or a facial as a treat. I can just take a day and do nothing.

 

Fibro and fatigue cannot take away my good and strong relationships. The friends who have fallen away are still wonderful and dear people - we just were on very different paths. My work friends, my sister, my special relatives, friends from high school and college and work are all a delight and they get it when I say I can't do more. Friends who have been with me for decades have seen me deal with whatever and they know that I am stronger than this condition. My kids are fabulous and loving and we keep things simple and that works for me. The little ones in my life fill me with inspiration and joy and I am always energized in their presence. My hubby is my rock and he is there for me every step of the way with his quiet strength. So what is it that I have truly lost for good? I think I know what it is - but I also have to say that I have made my peace with it. I miss my teaching.

Day 235 - WOW! This Could Be Good - No, Make that Great!

Living with fibro and chronic fatigue creates issues about using and conserving energy. The amount of energy I have available for me to use each day is an abstraction - how do I know how much energy I am using? How do I know when I am pushing past my limit? Dr. Benjamin Natelson writes about a way to determine the energy a person with fibro and fatigue has available each day using a simple system. Natelson says that a simple way to measure the energy used each day is to wear a pedometer that measures the number of steps taken as well as  the number of feet a person walks in a day. The pedometer is worn for about a week and each day the numbers are recorded. Over the week, even with adding an out-of-the-ordinary activity, the average of the daily numbers should give a pretty accurate picture of energy out-put. That number goes into what Natleson calls your energy envelope. The number may not be exact and it may not be reflective of all the kinds of energy expended per week, but at least it is a place to begin.

 

I am going to do this and see how it works for me. In the past I have determined my activity level based on how I feel - now I can use the actual feedback from my body - reflected in my numbers - to determine my activity level. Once I establish my baseline number, by continuing to wear the pedometer, I can start to see my energy patterns. It may be that many of my days are actually going beyond my baseline and I may have to reduce things a bit until I can build myself up, or it may be that on some days I have some energy to spare. I will have at least some way to quantify my baseline energy in-put and my daily energy out-put. I also plan to add in a way to quantify other stresses I experience each day. Social situations where I run out of energy before the event has ended is a good example of being physically stressed without taking steps. Or a tough family situation or work-load may be emotional stress culprits. Using this system I may be able to learn to make adjustments so I achieve better balance.

 

Every person has their own energy level and that's what goes in their energy envelope. I'm thinking of the number as dollar bills in my envelope - I can't spend what I don't have. If I do over spend, I go into debt. For me, an energy debt means I get sicker. The goal in using this process is not to eliminate things in my life that create stress or use energy. The goal is to be more aware of the energy I've got, how I am expending it, and then to bringing it into sync.  I will have to gauge whether my stress is as much a factor as my steps, and I have a feeling, at least for me, the stress may carry some significant weight. In addition, people with fatigue issues have a hard time exercising and can become de-conditioned, so getting back in shape takes effort and energy. I know this is important and I have started doing yoga again. I will increase my walking once the nicer weather is here and I will map out my plan based on gradually increasing the steps in my envelope. This is an experiment that feels exciting. Actually, I can't wait to get started.

Day 234 - Lost Time and Lost Opportunities

When I go to sleep at night, I always anticipate a good day when I wake up the next morning. I have never given up on the possibility that each day might be better than the one before. I make my plans as if my day is going to be filled with energy and limitless potential. After all, you just never know what a good day might bring. My optimism has left me open to some very wonderful experiences and I have met some fabulous people because I was willing to stay in the moment and just see what might be next. There is a point though, when my optimism is dashed and I find myself experiencing a day that is worse than the day before and that brings all kinds of stress along with it. I have just finished my third day on a row out of commission. I don't know why, but this has been a tough siege. I figured that after I had a bad day Friday, I was rested enough to enjoy Saturday. After Saturday was spent in a sick fog I thought for sure that Sunday would be fine.  It wasn't.

I'd like to hold out hope that tomorrow will be a good day. I figure the odds are in my favor. I rarely have four bad days in a row. But the pressure is on. All of the things I had planned to do over these past three days didn't get done. Friday is typically a slow day because I've been at work during the week and now I have my trip into the city again each Thursday. Usually I do a couple of little things around the house like a load of laundry or two, I go through the mail that has collected during the week, I might pay bills online or make a few phone calls to take care of personal business. Some Fridays I make it over to the nursing home for a quick visit. This Friday none of that got done so it went on the list for Saturday. It's already April and all of my winter clothes are still in my closet. I wanted to get some of those things moved around this weekend. Nope. Not Saturday and not Sunday either. I have three things on my list for finishing our taxes that didn't get done yet.  I can't do anything that involves details when I feel this way so my "in" basket looks like a volcano that is ready to erupt. I didn't get to visit with my family this weekend - my hubby went alone. Maybe next time.

My daughter keeps telling me I should get more help but I don't even know what to ask for. On days like this I can't even figure out what needs to happen next. It's not like I live in a gigantic house - it is a manageable size for a healthy person - but not for me. It's all of the organizing and keeping things together that get to me. My hubby does a lot and I do have someone who does some things around the house - I don't know what I would do without them. But all the detail things just spin in my head and don't seem to be able to get anything finished. I felt really horrible for the past three days and I spent a good part of today thinking about what needs to be done tomorrow. This is enormously frustrating and no matter how many times my days play out this way, I will never get used to the lost time and the lost opportunities.