Day 261 - Committed, Focused and Determined - Working on My Goals

When I was raising my girls I wanted them to have lots of experiences. Since they were going to be trying new things I assumed there would be activities they wanted to continue and others they would want to give up. Piano lessons didn't stick, nor did the clarinet or the drums. Cheering was a hit for one but not the other, just like bowling and horseback riding. Roller skating at the rink was a big hit and that interest lasted for years. It wasn't easy to know when it was time to give up an interest gone sour, because at the same time I wanted to let my girls explore their interests, I also wanted to teach them about setting goals and following through on their commitments. I wanted them to stick with something long enough to know if they really didn't like it or they were bumping up against the frustration of being a beginner. What I do know is that there are times to keep plugging away at a goal and at other times it is best to cut your losses and just move on. It takes some insight and maybe a bit of wisdom to know just what to do.

For years I taught adults and when a teacher in my class didn't see the value in a particular teaching strategy we were working with, I asked that they use the technique a couple of times in their own classroom before they rejected it so they would know exactly what they were rejecting. Sometimes we don't want to take on something new because it makes us uncomfortable or because it feels like to big a stretch. Unless we give it a chance we don't know if we are refusing the new possibility because of our own discomfort or fear or because the strategy or idea just isn't a good fit, which can certainly happen. Making decisions about what may be in our own best interest based on our experiences can be a real challenge, to say the least. I like to follow my own advice and so when I have to make a decision about which goals I will continue to pursue and which I let go, I have a lot to consider; is the goal attainable? Do I have the resources available to me to real my goal? Do I have the time available to make the commitment to the goal? Will reaching this goal enrich my life or the lives of others? Is it worth it? Is it a good fit? What will I have to give up to make room for this new goal? It sure gets complicated - but if the goal is worth achieving, the complication is worth it.

Just over eight months ago I set a goal. I made a one year commitment to getting my fibro and fatigue under control. I never imagined what it would take to work on the commitment I made to myself and my family. I had every hope that I would be feeling better and doing better than I am at this point. I have committed financial resources, an incredible amount of time including doctor visits, managing meds, as well as reading and researching to make myself an informed and empowered patient. I have followed my Lady Doc's orders, I have had more blood drawn and more injections in my butt than I would have imagined and I am still committed. I choose to continue working on this goal. I am extending my goal beyond my original one year commitment and I will continue to do what it takes to be as well as I can be. I know that few meaningful goals are reached without a huge amount of effort and determination and even with that, some goals remain elusive. I know for certain that I can't reach a goal if I am not fully committed so I work every day to make sure I give this very important goal my best shot.

Day 260 - A Good Plan Instead of Fear and Worry

My cab to the train station came a few minutes early and my dog needed to go out before I left for the day, My dog is big, and very curious, and very friendly. I walked to the side of the van that was picking me up to tell the driver that I needed just a minute to walk the dog and then I would be ready. Before I knew it, my dog popped up to look in the driver's window to say hello. The cab driver was petrified and immediately told me to get my dog away that he was petrified of dogs. I, of course, was already pulling my pup away before he even began to speak. I walked the dog and got in the van. Immediately I apologized to the driver and told him I was sorry that my dog showed bad manners. He went into a story about why he was afraid of dogs and the root of his fears were from one instance when he was a young boy. He said he hated dogs from that moment on and never went near a dog again. I felt badly that he has carried his fear for so long because there are so many wonderful animals that are sweet and endearing and hardly dangerous or threatening - and I know my dog is sweet and harmless, too.

 

I have my fears, as well. Every week when I go to the doctor I dread the injections - I am not a fan of the needles. After I got home yesterday I was asking my hubby if he remembered getting needles when we were kids. They were kept in a sterilizer (no disposable needles back then) and when the pediatrician walked toward that stainless steel box, I could feel the fear build in my belly and I could barely breathe. I remember crying even before he came near me when I did need a shot. Things today are different - needles are much finer and I barely feel them. But still, I have that moment when I know the needle is getting close to my skin that I feel the fear. (It isn't unusual now for a numbing agent to be included with a med to reduce the pain of the injection. Why couldn't they have that when I was a kid)? Anyway, my needle memory and the taxi driver's dog experience make me think about the fears that we carry with us and what we react to, even though in the moment there is nothing to fear. When I experience an unreasonable amount of fear about something that won't or can't hurt me, I have to ask myself why I am afraid.

 

It is difficult to let go of our past experiences when we have been hurt. When something bad happens it isn't easy to trust and stay open to the possibility that it won't happen again. I have a choice I can hold onto a sense of dread and let it negatively influence my thinking or I can let it go and make room for good things to happen. Every situation has the potential to be different or better than it's been before. I can choose to approach my life expecting the best or and not let negative past experiences color every experience. I grapple with my share of fears, and lately many of them have been about my heath and my future. Worry and fear go hand in hand and both rob me of inner peace and a sense of well-being. Certainly, there are things I need to pay attention to and things that could cause me harm. But, I don't want to be like that little girl at the doctor's office, quaking in fear, nervous and expecting something bad is going to happen. That's why I need a solid and reasonable plan along with an optimistic focus.

Day 259 - Getting Out of Myself Leaves Room for Others

This morning I hopped on the train to head into NYC for another doctor appointment. I've been going every week getting an intravenous mega-vitamin, etc supplement and today was a scheduled visit with my Lady Doc. Yesterday I decided to do a mood adjustment and get my positive emotional self back on track. I've learned that one of the best ways to feel better about myself and my own life is to get out of myself and do something for someone else. The train station offered me that opportunity. There was a woman waiting for the train with a seeing eye dog seated next to her. I often see the dogs in training around town since the Seeing Eye Training Center is only a few miles from here. I happened to be right behind her as she was about to get on the train and I wasn't sure if it would be okay to offer any assistance. She hesitated before stepping onto the train and I realized that she was having a hard time estimating the space between the platform and the first step on the train. I don't remember exactly what I said, but it helped her to move forward and board the train with her dog beside her. I felt good that I could be of assistance, even in that small way.

 

Once we were on the crowded train, the next thing that happened was that she wasn't sure which seats were open and available. Since I was walking right behind her,  I was able to help out with that too, I was on a feel-good-do-for-others roll, and even though it was just a tiny little thing, it had me going in the right emotional direction.  I felt calm and decided to enjoy the ride on the train. After just a little while though, I heard a not-so-quiet conversation between the ticket-taker and a passenger across from me, Seems a young man was on the wrong train and was short eight-five cents to stay on until the next stop. He showed the ticket guy his tokens and also showed that he didn't have any money in his wallet. After hearing this I, in my I-want-to-be-helpful mode offered the young man the money he needed. The ticket-taker refused my help and told the fella he needed to go the front of the train and deal with the conductor. As the young man walked by, I again offered my help. He declined and that was the end of it. I did what I could.

 

Imagine my surprise when the ticket taker came back and stopped at my seat to reprimand me for trying to help the young man on the wrong train. He said "those" people know exactly what they are doing. "They" pull this kind of thing all the time. You trying to help, didn't help me do my job. With that he walked away. I was shocked. I don't know if I helped or not, but I do know the way he was throwing around the "theys" and the "those people" comments he wasn't open to listening to this particular young man. I tend to believe people and trust that what they say is true. That young man looked and sounded sincere to me and I wanted to help. Maybe too much. I guess helping isn't always perceived as helping - in this case I tried to help one person and another found me to be clearly unhelpful. This isn't the first time I've tried to help in a situation and I wasn't as helpful as I thought I was being. When I help it has to be what the person needs, not just what I want to offer. I started out my day looking to feel better than I've been feeling and my focus was to get out of myself. I accomplished that, and whether or not I was helpful today, I meant well.

Day 258 - No More Debbie Downer - Got to Get Back on Track

There are days that just feel empty. Not in a terrible way, but just not filled with anything special or inspiring and not even anything uninspiring - just grey and boring. The dog seemed to feel the same way and he barely dragged his weary bones from one place to another. I had to take him out for a quick walk and he wasn't even interested in sprinkling a tree or two. He walked slowly by my side, matching my lack of energy. I left work early - I just didn't have anything left to give and even after grabbing a cat nap at the office, I didn't feel much better.  The weather was here and there - partly cloudy or partly sunny whichever way you want to look at it. There was a bit of rain, but not enough to call it a rainy day. My hubby came home late from a meeting and I had no motivation to get something together for dinner. I finally settled on making a sandwich at about nine o'clock mostly because I don;t want to wake up hungry in the morning. It was one of those days where I got little to nothing accomplished and I knew from when I crawled out of bed this morning it was going to be one of those days. I pushed through anyway.

The past few weeks have seemed especially hard and I don't know exactly why. The weather is heading in the right direction, although we have had more than our share of rainy days, work is going well and we have exciting projects on the horizon, my family is doing well and is on pretty much of an even keel. I am starting to bore myself with my glum mood and as my daughter would call it - my "Debbie Downer" view of things. I am typically known to be an optimist and I have even annoyed a friend or two with my unrelenting positivity. I think there have been times when I clung to my positive outlook because to see the other side would just throw me way off balance. I believe that keeping a positive outlook promotes healing and a sense of well-being. It also keeps things manageable and I am more likely to feel strong and capable. But truth be told, it is sometimes really difficult to hang on to my positive thoughts and I have periods where I do a slow steady slide into pessimism and negativity.

My reality doesn't change with my perspective. What changes is my ability to make plans and to cope more effectively with what is happening in my life. If I see possibilities I am better  able to move forward and focus on solutions and strategies for making things better. If I am positive I feel more energized and empowered. My body is healthier when it isn't pumping stress hormones into my body while I am trying to get well. But I am human and I feel a full range of emotions. I was sharing with my friend last night, that writing is therapeutic and just getting my feelings down in words helps me to examine them and then make a decision about the direction that is best for me to take. What I know helps is to take just one day at a time and not look back and worry about where I've been or to look forward and worry about what may or may not happen. The best strategy for me is to be real about what I am feeling and examine the source of my feelings. I can't control my feelings, but I can surely decide how I want to act upon them. Maybe writing these three paragraphs and getting my feelings down on paper is enough to start me in a different direction. I chose to be empowered and positive - no more Debbie Downer.

Day 257 - In the Right Place at the Right Time

Some people call it coincidence, others call it synchronicity and still others just call it being in the right place at the right time. Whatever you call it, it was perfect timing, and it led to a really nice evening. I had a hair appointment scheduled for yesterday afternoon but I couldn't keep my appointment because I just couldn't get off the couch. I guess I did too much celebrating on Sunday. Anyway, I rescheduled my appointment for late this afternoon and just happened to make the appointment at the exact same time as a dear college friend I haven't seen for a while. I walked in the hair salon just as she was finishing up, but she stayed on and sat with me while my hair stylist worked her magic. What could be more fun than sitting through a hair appointment chatting away with an old friend. Life has it's little surprises and tonight's was a really good one!

My friend and I were close way back in our college days. Through a social media site we connected again less than a couple of years ago and for a while we were getting together for coffee on a pretty regular basis. We stopped when I started being sick more frequently and it has been months since the last time we sat together over a cup of coffee. Girlfriends love to chat and that's what we got to do tonight. I haven't been very good lately about planning get togethers with friends or even family. It has been a long hard winter and I feel as if I have been hibernating. Tonight I felt vibrant and alive. I loved having time to chat and get caught up with everything that's been happening. I liked that I kept my energy through our time in the salon and right through our impromptu dinner at a favorite restaurant. Being in the right place at the right time sure worked out well for me.

If you had told me that my day would have turned into a ladies day out, I wouldn't have believed it. It started when my daughter called me at lunchtime and asked if I was free to get together. Of course I said yes, and slipped out at lunchtime so we could have a few minutes to chat and be together. It was a lovely and unexpected pleasure. When I got up this morning I wasn't feeling very well and I felt tired and dragged out most of the day. Being with strong, smart and wonderful women, like my daughter and my college friend, makes me feel empowered and definitely more energized. Being with women who know me and who let me off the hook when I feel like I can't give one hundred percent are much appreciated. Lately, I have been telling friends that maybe the best way to get together is to make plans at the last minutes when it seems it will work, rather than planning too far ahead and being disappointed because I have to cancel. I guess the universe heard me and slipped in a couple of last-minute, fun and relaxing get togethers today, just to prove that it's a good idea. It sure did work for me.

Day 256 - My Effort is Supposed to Have a Payoff

Nobody likes to fail but truth be told, we all have our list of times that we considered ourselves to have missed the mark. It is simply part of the human condition We strive, we fail. I know I have a pretty good list of failures and mistakes and there are moments in my life I wish I could take back. There are choices that led me in the wrong direction and I had to correct my course. There have been words I shouldn't have said and mistakes I wish I didn't make. Some of my mistakes were not intentional and some I made even when I knew better. There are situations when I didn't take the high road and circumstances where I could have done better. I tend to be my own worse critic, so I don't usually need to have someone else beat me up over my failings - I do a pretty good job of it myself. But there is another truth - what's done is done.

Even though I can't do anything to change the mistakes I've made, I can do my best to make things right and to show some humility when I see that I have been in the wrong. There are probably times when I have been convinced that I was "right" when the person on the other side of the situation was just as convinced that their truth had more validity. Mistakes can be relative - maybe both sides had a point or maybe the entire premise was off in the first place and both sides were mistaken. I don't know. I do know that each failure I have experienced has been an opportunity to learn, grow, demonstrate perseverance and tenacity and in the end forgive myself. Many of my shortcomings are in areas where I can work on learning, changing and seeing things from a new perspective. The one place I never thought I would experience a sense of failure is in dealing with my own health. It's an area where I have paid attention and worked on making good choices. But I am starting to feel that no matter what I do, I can't get a handle on my health - and that doesn't set well with me.

No matter how many pills I take, potions I drink, activities I avoid or inspirational pieces I read - I don't get better. I don't want to frame this as a failure on my part, but I do feel like the choices I am depending on to heal me are failing. I also don't believe there is better treatment any where else than where I am going. I just think fibro and fatigue are formidable foes. They don't back down and they don't resolve easily. I have a good day and then it is as if the fatigue returns with a vengeance. I have a good few days, but they fade into a fog and here I am back on the couch and out of commission. I fully acknowledge my shortcomings and mistakes, and even my failures - but when it comes right down to it, when I set my mind to something I succeed. I work hard, I stick with it and I am a willing learner. I am used to my effort paying off. So I am having a bit of a time wrestling with my current condition. It may be time to redefine success, set some new goals and aim in a different direction. In the end, my biggest success may be to manage my symptoms, but never succumb to them,

Day 255 - A Holiday Party and a Bit Left Over for Me

A holiday, for me, is a time for family to get together. When we have a chance to be together it is what we like to do. Today my hubby and I went to my daughter's house for an afternoon party and the house was filled with family members and lots of kids. It was wonderful. What was also wonderful was that I was able to contribute to the party in a way that suited me perfectly. I had the energy to follow through on what I promised to prepare and I could go to the party with something in hand. I prepared a couple of casseroles last night and had great fun in my kitchen chopping and shredding and baking. This afternoon, I helped in my daughter's kitchen a bit, and I think I helped to relieve some of the pressure of having a house full of folks. It felt great to feel useful and a part of things. I enjoyed socializing and all-in-all it was a lovely day. What made it work well for me was that I paced myself and made sure that there wasn't a time during the day that I was pushing beyond my limits.

 

I started the day by having the energy to make a real, from scratch breakfast and thought from the way I was feeling that it was going to be a great day. Within an hour, I had a mini-crash and from about ten until noon. I slept. When I woke I got myself into the tub and started to feel better again. The rest of the day was pretty good - but as soon as I felt my energy waning I found a quiet corner and let myself just relax for a little while. I think it made a big difference because typically, when I am in a social situation, I often find my energy gone before the event is over. Not this time. I stayed until the end and even had a bit of energy left over for a visit to my mother and brother in the nursing home. It was great to be able to spend the day the way I wanted to and to have an opportunity to be with my family and participate in our holiday celebration. At the end of the day I still felt good and settled into a quiet evening. All in all it was a great day.

 

There have been holidays in my past that I have totally missed because I was too ill to be part of the gathering. There have also been holidays that came and went without me doing very much planning because it just wasn't possible. I am learning to let others do what I can't and I am also learning to make the most of every single minute I get to celebrate with loved ones. I used to have very clear ideas about what it meant to have a holiday celebration, but over the years I have learned to match my expectation to what I can realistically accomplish. I love to have fun and to get together with people I care about. I know that it doesn't have to mean that I do the work, that I have to be the hostess or that I have to live up to a self-imposed standard of what it means to enjoy a holiday with my family. Traditions come in all shapes and sizes and just because I have done something a particular way, it doesn't mean it has to be that way forever. I can change because I wish to, not because I am forced to and discover new traditions that match the life I am living now.

Day 254 - This, or Something Better

Something good always, and I do mean always, comes from the toughest times. Here I am in the middle of a health funk and I have to say that I can easily identify lots of good things that have come out of this. I have met people I like and enjoy that I would not have met were it not for the fibro connection, I have become a disciplined writer - I have written my thoughts every single day for well over 250 days - an accomplishment I would not have expected. And something I have tried before, but without this kind of result. I have identified health issues that had gone undiagnosed that were doing me harm and now I am back on track. I have developed new hobbies that match my easier lifestyle and I have embraced a slower and easier pace. I set priorities that do not include wasted time or energy. When I do something, it gets my full attention because I value my effort even more than I used to. Those things are welcomed changes, even though they are not what I had planned for. When something is being taken from me, and I am afraid, my prayer has always been, This, Dear God, or something, better.

 

When something is taken away, it is not necessarily replaced immediately by something of equal value. In some instances something of greater value appears and other times what has been replaced grows in value over time and can be appreciated in maybe a bit of a different way. We can look back and see that at first it wasn't viewed as something that would enrich or fill our lives, but it took some time for its real value to be revealed. When I am grieving what I have lost, it is because the loss has created a void. There is nothing where something good used to reside. My life is out of balance and I don't see how it can be righted again. But it gets there, minute by minute, day by day, week by week.....I just keep putting one foot in front of the next and I keep my eyes and heart open, seeking new possibilities. My job in this is to remain optimistic and willing to do things differently and to learn new ways to participate fully in my own life.

 

I feel a tenderness for my past, and for the things that used to fill my life that are not there any more. Many of those things faded away, not because of an illness or some dramatic incident - but because time has a way of reshaping our lives and moving us gently from one phase to the next. I used to do so many things that are no longer part of my life - but I know that I can bring parts of them back to me if I am patient and willing to see things in a different way. I may not be able to hike in the woods, but I can take a walk. I may not be able to work an eight hour day, but I can do six. I might not cook dinner - but I can enjoy the meal prepared by someone else. I may not be able to read as fast as I used to - but I can still enjoy a good book in larger print and at a slower pace. I can still love as much as I always have and I can still stay connected to people I care for. My life is always experiencing something coming in and something going out. I can appreciate the shift and focus on what's good - that's what makes a bad situation grow into a new possibility.

Day 253 - Unpredictable as a Spring Day - But Heading in the Right Direction

In some ways, living with a chronic condition is just like spring. From day to day I just never know what I am going to get. Yesterday was sunny, on the warm side with a bit of a breeze. It was perfect weather to take a long walk and enjoy the trees in full bloom and the spring flowers poking out of the ground - so I did. It was wonderful to be outside. We walked in Central Park and I have never seen it before in its spring glory. Lots of other people were outside enjoying the warmth of spring and a hint of what's to come. it felt energizing and it seemed to me that people kept their heads a little higher, they smiled a little quicker and they walked with a bit more pep in their step. It was just about a perfect day. Then overnight, it seemed that the weather was heading more toward winter then summer. It was a complete turn-around and the temperature dropped by twenty degrees, the sun didn't shine and I certainly didn't go walking.

 

A perfect spring day is a real tease, especially when it is followed by a raw, nasty day.. We all like that time of year when everything seems a bit more relaxed and the days are long and the nights are sweet. It smells good, it looks pretty and being outside in the sun feels nourishing, like food for the soul. In contrast, winter makes me want to hunker down and pull back in. When it is bitter cold, being outside is an exercise in forbearance and not something I seek out. This in-between season give me a bit of both and I begin to take notice about how much the weather impacts my symptoms, my mood and my overall sense of well-being. I like the movement toward the warmer weather - my body doesn't feel so stressed and I love the longer days and the warm sunshine.(I certainly like heading toward summer, but I don't like the extremes of summer any more than I do the extremes of winter). So, I guess I'm sort of a transition kind of person in that regard.

 

It seems clear to me that the ups and downs of fibro are like the inconsistent spring days. Just like a spring day can go from sunny to rainy to chilly to warm all in the space of twenty four hours, my symptoms do the same. I go from energized to tired, to having pain, back to energized then flat out on the couch in the same amount of time it takes a spring day to run its full cycle. Some days I go out, thinking I'm prepared for the weather with what I'm wearing, but then I find out my jacket is too light to keep me warm or the sweater I chose makes me feel way too hot. I just can't seem to get it right with any degree of consistency. Same is true for my fibro and fatigue. I don't seem to be able to predict or prepare for the kind of day I'm going to have. I suppose I shouldn't  continue to be surprised by ups or downs I didn't expect, because that is the true nature of this condition. Aside from knowing what will definitely put me into a crash, fibro is truly unpredictable. But, if I can see it being like a day in spring, unpredictable but heading in the right direction I might be better at living with the uncertainly. 

Day 252 - Ups, Downs, Pacing and Doing

Central Park in NYC is absolutely beautiful this time of year. My hubby came with me today when I went into the city for my Lady Doc appointment. Afterward we took a walk over to the park and enjoyed a leisurely stroll. The sun was shining, the trees and flowers were in full bloom and we were among probably thousands of people sharing the experience. I felt energized and filled with life as we followed paths that led to ponds, playgrounds, horse-drawn carriages and lots of other beautiful park views. I loved the people-watching, especially the little kids who jumped around with excitement at being outside on one of the nicest days so far this year. My enjoyment was in stark contrast to the start of my day.

 

My morning was rough and it was one of those days I would have preferred to just plop on the couch until the fog lifted. The first few hours were a struggle but I had to keep pushing through to leave for my train at ten. I have to say I am getting a bit tired of this routine. I feel like my day begins three to four hours after I get out of bed. No matter what I do, the beginning of the day is miserable. And because my body feels like it is swimming through sludge, my mood usually matches. I didn't used to be this way. I remember my first teaching job there was a sixth grade teacher who told me to stop saying good morning to him because he didn't feel all peppy and chipper. I really couldn't understand not being in a great mood at the start of the day - after all it is a new day that we get to anticipate and watch unfold. Now, I get it . I really, really get it. Sometimes a person really does have to walk in an other's shoes to get the message.

 

I am happy for whatever part of my day that is good. Even on my worst days, I usually have at least a few hours that aren't a total loss. The ups and downs are the hardest part of this condition, and it goes without saying the downs are the hardest to cope with. This morning I was struggling with fatigue and a miserable migraine. but by mid-afternoon I was taking a walk in the park - go figure. After our walk I did feel tired so we hopped into a cab and then by the time we got to the train station I got my second wind. There was no cab at the station back at home so my hubby decided to walk home and bring the car back for me. I made it as far as the local library and waited for him there. Another down, and then back up again, but once we walked in the door I was pretty much done. I think I paced myself well today. I didn't give in to my bad morning and I got to have a sweet afternoon in the city. I felt like I was riding a series of waves, I didn't wipe out and I got to enjoy a beautiful spring day in the park!  

Day 251 - The Good Samaritan and the Cop at My Door

I rarely hear my dog bark the way he did tonight. It was as if he knew he had to protect us from someone or something. When my hubby checked out the front door he saw a police car parked in front of the house. He closed the door and the dog settled, but I didn't. I wanted to know why the car was out there so I stood at the front door with my dog and watched as the officer sat in his car with the interior light on, taking notes. I was starting to get really curious, but I also felt a little strange standing in the doorway, monitoring a police officers behavior. As I was about to close the door I noticed the light inside the vehicle went out, and the officer climbed out of his vehicle. He was coming to my house! Gulp. I know a policeman is supposed to be our friend, but I couldn't think of a single good reason for him to be appearing at nine o'clock at night.

I waited for the officer to come to the door. He asked if I was Diana R and asked my hubby's name. I confirmed who I was and waited for what was coming next. He said there was a problem with a check. Hmmm. I don't write many checks so this was a mystery. I invited him in. Seems I had paid a person I hired to do some work in my home and the check wound up in a parking lot ten miles from my house. A good samaritan found it and turned it into the police. Now, that's my kind of visit from a police officer. He was very courteous and called the police station in the other town and we arranged to pick up the check. I called the individual who lost the check and the person was totally unaware it had been dropped. We both commented about our happy ending and shared our appreciation for the person who went out of their way to be honest and helpful.

Good things happen all the time and it is really important to take note. It seems effortless to list all the bad stuff going on, to complain about what isn't working and to lose sight of what's right and good and wonderful each day. Recently I've been heading toward a real slump - grumpy, negative, discouraged, and pretty much unpleasant to be around. Not feeling well doesn't do much for my sunny disposition. I have had so many bad weekends, I am far behind around the house and in being caught up with a bunch of responsibilities. I feel stressed and afraid I will never catch up. Even though I don't like to ask for it, I need help. I had some help today and I paid for it willingly and thankfully. Then tonight, circumstances came together to make sure the money I paid out for the help I desperately needed, was put back in the right hands. Everyone benefited. Me, because my work got done, the workers because they got paid for a day's work, and some good-hearted, honest and responsible person got to do a good deed and feel good about that. That one small act set a little piece of my world right.

Day 250 - Healing From the Inside Out and the Outside In

Day 250 - Healing From the Inside Out and the Outside In

I sat with a woman this morning who told me she had recently lost over fifty pounds. It was clear to me that she was very proud of her accomplishment, as well she should be. What interests me is that she didn't talk about her weight loss as a body thing - it was more about her motivation, her decision to make better choices and her determination. Another person I spoke with is recovering from surgery and is wanting to gain back a full range of motion and function. Yet another is a gentleman too young to be recovering from a stroke, and here I am dealing with my stuff. As I think back on my conversation with each of those individuals, I began to think about the depth of challenge we all faced. We each had lots of feelings about what we were contending with, and each of us had to dig deep and find extra strength and focus to work our way through our difficulty.  Through our sharing it became clear that the symptoms expressing in our bodies were triggering emotional and spiritual challenges as well They are connected.

 

I do believe that our bodies express that we hold inside. What needs to be healed on the inside gets expressed outwardly in our bodies. I'm not sure that there is a one-to-one correlation that equates a specific emotion to a specific illnesses or condition. What I have found is that there is a dialogue I can have within my self to uncover the aspects of my higher self that need nurturing, healing or transformation. Why do my neck and shoulders hurt some days and my feet on other days? Maybe my head is filled with too many troubling thoughts and it just gets "too heavy" so my poor neck has trouble holding it up. Why does stress relief relieve my neck pain? Why do we say a difficult situation or person is a pain in the neck? Emotions cause body pain? Maybe my neck and shoulders hurt when I am shouldering" too much responsibility. My spiritual lesson is to learn how to let some things go and get them off my shoulders instead of letting them weigh me down and hurt me.  Maybe my feet hurt when I "can't stand" something that is going on in my life. When my feet hurt I can't stand.

 

My first line of strategy in dealing with my fibro symptoms has been with with meds and treatments, but this journey of healing has been as much an inside job as it has been a medical recovery. I have spent lots of time contemplating the meaning of my journey, knowing that I can never know for sure why fibro chose me. What were the conditions in my life that made me ripe pickings for a nasty disorder that turned my life upside down? Maybe I needed to slow down, become less self-critical, change my work focus, pull back from some relationships that were put of balance and take time to really care for my health. Maybe all of the stress I was managing needed to be lifted so that I could re-focus and get back on track. Maybe, deep in my soul, I didn't feel like I could do all of this without something dramatic intervening on my behalf. I don't know. Maybe fibro is my greatest teacher. My Lady Doc can only do so much for me. I am the one who has to work on the emotional and spiritual lessons this condition brings up in me. I can use this condition to examine the issues that arise within me and in the process, also learn to be more self-accepting, and as nurturing with myself, as I would be if I were tending to someone else.

Day 249 - Courage, Caring, Connection and Meaning

My daughter with Cornelia de Lange Syndrome is an incredible teacher. She has taught me what it means to be courageous and open hearted. Imagine how much courage it takes to live every single day of your life completely reliant on others for your very survival. My daughter trusts that her needs will be met, her questions answered, and she expects that she will be loved. As a matter of fact, I think she gets a little surprised when someone doesn't take care of what she needs, because the people in her life have been trustworthy - and I'm not just talking about her family. She is loved and liked and tended to and made to feel that she is capable and wonderful - because she is. In her own way she makes a contribution to the soul growth of all of us - we learn patience, tenderness, compassion, and a host of other skills just in taking care of her social, emotional and medical needs. She lives a life of caring and demonstrates a connection to others that is free, open and trusting. My daughter never meets a stranger.

 

Just like my daughter, I want to focus on a life with meaning and connection.  It doesn't matter that I spend a good part of my life on the couch and out of commission, I want to be a source of joy, love, inspiration, comfort, compassion, connection and healing. I want my words to be a balm for another's pain or a source of caring and friendship. I want my experiences to be a reminder that we all have our journey and that we are in this together. I want to be a soft place to land for someone who needs a willing listener.  When someone needs to give voice to their joy, sorrow, pain or confusion, I want to be on the receiving end, listening and caring. I want to live a life of meaning in my family, my work, my community and through my choices. I know that my experiences are not unique, but I also know that we are all connected in deep and mysterious ways and I want to live that mystery and watch it unfold before me. I know that there are others who suffer far more than I do and our shared experience can lift us up from our despair into healing. I want my life to be about the rising above and the moving through - not about the being stuck or feeling hopeless. I want to move forward with faith and confidence.

 

Each of us brings gifts that no other shares - my daughter does, I do and you do. We are unique and brilliant beings who are here together to live our lives in fullness and abundance. Where there is lack, we can shine the light of love and there will be prosperity. Where there is pain, we can respond with compassion and ease  suffering. Where there is joy we can multiply the happiness by sharing and celebrating it with each other. Even in the midst of pain and challenge there is enormous good in our lives. The negatives can easily overtake what's positive if we let our thinking shift in that direction. Sometimes our unhappiness, pain and frustration blind us to our own highest good. I wonder sometimes where will I possibly get the energy to do all that I wish to do that gives my life meaning. What I realize every time is that I need to redefine what I want to do and then find a way to do my best. It is what my daughter does every single day and if she has the courage then I can ask no less of myself.  

Day 248 - I Get By With a Little Help....

Today was a long travel day. We left Philadelphia and headed north to bring my daughter back home after our day of doctor visits. We had to go through Philadelphia on our way north and we have lovely friends there who very graciously invited us for lunch. We stopped for a couple of hours and it was delightful. My friend made a yummy lunch that we ate outside on her patio and we spent our time together relaxed and happy. My daughter did well and felt comfortable even though this was the first time she met these particular friends. That stop made a very difficult day much easier to manage. We still had to drive over two and a half hours to my daughter's house and then an hour and forty-five minutes to home. I get by with a little help from my friends and that stop was a huge help.

Friends often ask what they can do to help when they know about my struggles. This weekend my focus was on my daughter, but that doesn't mean I wasn't struggling with my own health issues at the same time. It was enormously difficult to take care of myself while I was tending to her needs. I even forgot to take my meds yesterday. I set my pills, poured a glass of water then my daughter needed something, I walked away then totally forgot to take the pills. I was beyond exhausted trying to pack for our trip and both mornings at the hotel  I was pushing myself beyond my tolerance level to get us all out the door. While I was standing and waiting for the elevator to take us to the parking garage I could barely stand up and was leaning on the luggage cart to hold myself up I felt so weak and sick. At the same time my was daughter was spilling her hot chocolate all over herself and getting agitated with my attempts to stop the spillage. We both lost our patience with each other and it wasn't a shining moment for either of us, but thankfully, the moment passed quickly.

There are times when I just run out of give. I have nothing left of myself and in that condition it is impossible to tend to anyone else - even when it's my own daughter who has special needs. I don't feel like mother of the year in those moments, but I also recognize that I am not acting out of a lack of caring or concern, but out of my lack of wellness. You can't get blood out of a stone and you can't get energy out of me when I am depleted. Thank goodness for my hubby and for the people who helped manage my daughter when she was seeing her specialists. My friends who invited us for lunch were life savers, and they probably just saw our visit as something we enjoyed. We enjoyed it, for sure, but I will be certain to let them know that their hospitality made a very rough day manageable and a lot more fun. I need my friends, not to do things for me, but to do things with me. This was a great example of a great friend coming through with precisely what I needed at exactly the right time.

Day 247 - Great Doctors VS Good Ones

I spent the good part of today with a group of doctors who donated their time to work with young adults who have Cornelia deLange Syndrome. I mention the name of my daughter's condition because it is not well-known and like fibro, there needs to be much more research so the symptoms can be treated and managed more effectively than they are today. When my daughter was born thirty-two years ago, there was almost nothing known about her diagnosed syndrome because it was so rare. Even though I had very nice doctors, they really couldn't help me to manage the multiple challenges we faced. We learned together. I had genetic specialists in Philadelphia that I consulted over the years and through their effort and dedication, they have identified the cause of CdLS. They never stopped for a moment working and researching to find out as much as possible about all aspects of this disorder.  I also had the benefit of a newly formed parent support group that I am still active with today and I relied on that support they way I rely on my fibro community.

There are doctors out there who are incredibly amazing and not at all ego-driven. When I am in their presence I can feel their compassion, curiosity and expertise as they ask probing questions and give their well-considered responses. Today my daughter met with eleven doctors and ten of them were fabulous. Number eleven was a bit of a disappointment and what's interesting to me is that my hubby had the exact same take on him - and that was before he, as an internist, declared to me that there was no such thing as fibromyalgia and it was the same thing as chronic fatigue and who wouldn't be tired if they were in pain. I was there for my daughter, this was not about me. We were exploring reasons why she fatigues so easily, why she is stiff in the mornings and why she has so much pain. I just briefly mentioned my diagnosis and that man just cut me off at the knees. He wasn't even nice about it - he was snippy and curt. I was there to find out as much as I could learn about how best to manage my daughter's symptoms. Other doctors asked multiple questions about family medical history. That's what great doctor's do.

So what makes the difference between a good doctor and a great one in my mind? What I noticed today is every great doctor was a good listener. They each made eye contact as they spoke and they didn't talk down to us. They had a wide range of knowledge and expertise in their field and they were at ease when asked a question. They didn't appear to be defensive or all-knowing. They talked in terms of what might be happening and suggested strategies for testing and figuring it out. They looked to be clear and concise as they discussed symptoms and what they could mean. These great doctors recognized that they have more to learn and are very willing to confer with other doctors before drawing conclusions. A great doctor continues to learn, continues to dedicate him/herself to their profession and keeps the patient utmost in their mind. I was happy to be in the presence of great doctors today and I am enormously grateful that they were there to take care of my daughter.

Day 246 - And Then The Grumpies Set In

I wasn't a  very nice person this morning. I had to get up early to tend to my daughter who is home for the weekend. I have been questioning myself lately - kind of a soul-searching kind of thing, wondering if I am giving into this fibro thing too much and not asking more of myself on my off days. Today answered my question - I know that today I wasn't giving in - I was pushing. My hubby left early to take the dog to the kennel for the weekend so I was home alone with all of the challenges of having a daughter with multiple disabilities. She can't bathe herself, prepare her own meals, get herself dressed without some assistance and can't be left unsupervised for more than a few minutes at a time. When she is home I am on duty and there is no reprieve. We had to get out of the house fairly early and I had to do some packing - for her and for me. You would have thought someone had asked me to run a marathon or build a bridge - that's how much effort it took to get anything done.

There is a delicate balance between taking care of myself, pampering myself when I need to, and falling into self-indulgence. We all have lazy days and they are an important part of a balanced life. Taking time to just sit and stare at the trees and the squirrels is very nurturing. Going for a massage is both therapeutic and an indulgence and putting off a chore isn't the end of the world I don't call in sick to work very often. If I've made the commitment to go in, I go. I suck it up and let the energy of the day get me through. Mornings aren't a very good gauge of what my day is going to be like - especially the first hour or so. I've questioned whether I have just assumed it was going to be a rough day and settled in on the couch without giving the day a fair shot. Usually on those days just getting a shower and putting myself together is enough of a test to gauge how I'm feeling. If it's a good day I just keep on going, on a bad day I have to stop and rest a while before taking on the next task. Today I tested, and knew I couldn't keep gong, but I had no choice - that's when the grumpies start.

When I am not feeling well and I am being pushed, I lose all patience with myself, others and with anything else that crosses my path. I have to just zip my lip or I will say things I don't want to say. When my hubby got home he was fair game - and that's not fair. I told him I had no ability to be reasonable and to just ignore  my grumblings. When I'm feeling that exhausted, stressed and grumpy he can't even breathe right. He was smart and just went into the other room. Luckily my daughter felt sleepy and headed back to bed for a longer sleep. Without that break I don't know how I would have made it through the morning. I try to keep my patience with her.  I lay low until my mood shifts or I get some energy back. Within just thirty minutes I went from sleepy to grumpy, to weepy and I'm sure if I kept track, I could have represented all seven dwarfs. I get so peeved at feeling lousy that I my anger gets all mixed into my feeling ill. I checked in with my hubby and he doesn't think I give into my bad days. I'm the only one who really knows and I am pretty sure I'm doing the best I can without indulging myself.

Day 245 - Fibro is Not the Most Important Thing

We were a pretty sorry sight here this evening. My hubby is recovering from an upper respiratory thing and was nodding off, I drove three and a half hours to bring my daughter home and was totally spent and my daughter was just worn out, too and we were leaning against each other, both barely able to sit up. She went to bed by eight, my hubby napped in the chair and I just stared straight ahead at the TV, willing myself to stay awake until she finally got settled and I could get my writing finished. I am in one of those tired moods where I don't want to talk. I don't want to do anything - I just want to crawl into bed and sleep the night away. My hubby and my  daughter feel the same way and it is good to be just regular tired and not have every uncomfortable feeling or symptom relate back to fibro. It makes me feel very ordinary - and in this context, ordinary is a very good thing.

A friend's husband has a new diagnosis of something that is fairly common, isn't life threatening, but it is life-style threatening. His doctor's advice, in addition to some cutting edge treatment, is to just go about life without focusing on symptoms as much as possible, and put the ailment and its symptoms in the background. I like when doctors give that kind of advice, because I think its important to keep things in perspective. In regard to my own symptoms, I think I can do a pretty good of pushing things into the background, but there are other times when they are front and center and I can't imagine having the will to push them aside. I am better at it when I am out in public or engaged in an activity that completely captures my attention. When I am alone its a different story and I think the silence that surrounds me allows my fibro to have a bigger voice. Tonight I am tired because it was a tiring day. I feel exhausted and it's not about fibro.

It is tiring to be a parent, to have a job, run a household, to tend to extended family and to deal with the everyday details of life. It makes sense to be tired after a five hour trip that included driving, an annual meeting, packing a suitcase and stopping for a quick hello to my other daughter and her little ones. It's a very ordinary thing to feel sore after yard work, discouraged after a disappointing decision at work or in a slump when the sun doesn't shine. Everybody, every single day, deals with and manages an untold number of issues, problems, and circumstances. It is simply part of the human condition. We can feel tired after a party, a wedding or a great vacation. We can be sore from dancing or doing a much anticipated project. Those are all markers of an ordinary life lived in an extraordinary way. Sometimes we're sick and sometimes we're well. Some days we hurt in our bones and other days its our hearts that ache. But we go on because we have a jest for life. And, if fibro is part of it, that's just how it is . But it doesn't have to be the most important part.

Day 244 - Fibro Hasn't Gotten the Best of Me

Today I had a good day from start to finish. My energy was good, I felt sharp, I got in a good day's work and even had time to pop into a shop on the way home from work and pick up a dress for an upcoming event. This is just two days after a four day slump. Go figure. I am totally blown away by the inconsistency of this condition. I can go from a discouraged lump on the couch to an optimistic, productive, energized and active woman in the span of twenty-four hours. I can go from insomnia to a solid night's sleep, from a migraine to a clear head, from fatigued to feeling fantastic and then back again. How the heck am I supposed to plan my life when I never know what the next hour will bring?

 

I was thinking on my ride home today if there was some way I could figure out how to create a good day. Is it because I get up and shower immediately? Hmmm, no, There are days I go from the shower to getting ready for the day, then right back to into bed, because the effort of getting ready wore me out. Should I go back to staying in bed for thirty minutes after I wake up so I get my body in gear before I jump out of bed? Well, I'm giving it about fifteen minutes these days and I could try the thirty minutes again, but it didn't really make much of a difference in my day when I was doing half an hour. Does it matter what time I get into bed? Too early and I just lie there, waiting for sleep to come, but too late invites sleeplessness. When I stick to a tighter schedule of when to go to bed and when to get up it has worked, but there are still those days when I am following my routine and it gets all screwed up anyway. Take my meds? I do that. Eat healthy foods - pretty much do that too, Reduce stress. Umm, maybe not as much as I could. I can't change my circumstance, but I do focus on keeping my head on straight - but some things just kind of gnaw at me anyway.

 

Maybe what it boils down to is that there really isn't any particular thing that is going to make this condition go away or be better day-to-day. There isn't anything I can do or think or feel or believe that will make my condition vanish. What I can do is to keep doing all of the little things I know to do, stay confident in my treatment plan, continue to learn and explore possibilities, take care of my emotional health as well as my physical health and pay attention to how I am feeling and just deal with it. I have to stick with what I know is true for me and to continue to understand that this is a complex situation with no easy or guaranteed resolution. In addition to my medical plan I need to keep the rest of my life simple and sweet. I need to sleep when I'm tired, eat when I'm hungry, laugh when I'm happy and cry when I'm not. I have to just keep putting one foot in front of the next and keep my chin up and stay optimistic. This condition may have taken some things away but is hasn't gotten the best of me and it never will. Never.

Day 243 - Sleepless Night - Lousy Day

Last night my dreams included a large cast of unhappy and stress producing characters. I kept waking up and couldn't quite put it all together, but it was not a peaceful or restful night's sleep. My sleep has been messed up again. If I don't sleep well, I don't function well for the next day or two. I have no idea what triggers my sleeplessness. I stay away from caffeine, especially after noon-time, I do go to bed at about the same time each night and I am up in the morning within an hour of the same time each day. But when I don't fall asleep until three in the morning, there isn't anything good that is going to happen the next day. There is no way I can function with any degree of normalcy once I pull myself out of bed after a sleepless night.

 

There are lots of us who know about sleepless nights - college studetns, new moms, individuals under stress, menopausal women, folks with depression and certainly those of us with fibromyalgia. For most of my life I have slept like a rock and my sleep problems had to do with my tremendous need for long hours of sleep rather than sleeplessness. For the past ten years, I have had some serious sleep problems and at one point I was chronically sleep deprived and it wreaked havoc with my body. Since I started with my Lady Doc last August, my sleep has been much less of an issue. I do take meds at night - but not sleeping pills that knock me out and into oblivion. I tried those heavy duty sleep meds that are so beautifully advertised on television and I had an experience that was truly frightening. I don't want to get too personal, let it suffice to say that I appeared to be awake and I was up and functioning, but had absolutely no memory of it the next day. I could have driven my car or cooked or taken a walk in the middle of the night without any awareness because those drugs have a hypnotic effect. After that experience I swore I would never take a sleep med like that again. And I haven't. For months and months I have been sleeping well and I have to say it is a real luxury to sleep through the night. I want that back again.

 

I have learned in living with fibro, that symptoms come and go, with or without treatment. I might go a fairly long while experiencing pain and suddenly it just goes away. I have my good times and I have crashes. Those ups and downs are to be expected. My sleep issues seem to come and go as well. When I don't sleep, my fibro really kicks up and all kinds of symptoms are triggered. It makes it a lot harder to cope when I am not functioning because I didn't sleep well. Lack of sleep can cause memory problems, difficulty concentrating, it can impair decision-making, cause clumsiness, weight gain, impaired glucose tolerance and in the end you just feel lousy after a bad night's sleep. When I haven't slept well I have less patience, I  feel less motivated and certainly more tired. When I have one bad night after the next I just give up and spend the day in my jammies and try to get rested up enough that I can start to function again. So here I am facing another night. I am going to get into my most comfy PJs, take my supplements, play my sleep music on my iPod, think good thoughts and then just gently drift off to sleep....please. 

Day 242 - Today, Spring Took Good Care of Me

 Today was my first warm day on the new porch and it was yummy. I opened up the windows and pulled back the shades on the glass roof to block the strong sun and I basked in the warmth of our first real spring day. Today was the kind of day that reminds me of everything I love about this time of year. Bare feet, a tall, cool drink, a soft, warm breeze and time to enjoy it all. Typically, I feel my best late in the afternoon and in the early evening. My favorite time of day in the warm weather is late in the afternoon when the sun has dropped a bit and the major work of the day is behind me. So my best time and my favorite time come together in the spring. In the early evening I can enjoy taking time to sit and relax, eat outside on the porch, maybe read, have some conversation or take a slow stroll with my hubby. In contrast, in the winter my best time of day is dark outside and getting colder. Not the best combination for me.

Just one warm day is a tease. Tomorrow it is supposed to be cool and cloudy and then get a bit warmer at the end of the week. But still, it isn't winter any more and I think the worst of it is behind me. The way I usually get through something tough is to set my eyes on the goal and power on through. That's what it felt like this winter - I had my head down and I shouldered on. Granted, I did get some time away from the cold and that was a blessing, but once I got back into the cold it was right back to just hating the way the cold just sets in my bones. I never felt like my feet were warm and I dreaded going outside when the wind was blowing and the chill wrapped itself around me. I believe that part of the reason I don't do as well in the winter, aside from the cold temperature,  is because I need the sunshine and the short days seem to rob me of some of my energy.

I cannot control the weather and I am not in a position to move around to follow spring-like temperatures. I want to live close to my family, I am not ready to stop working and I don't want to move every time the seasons change. So what is left for me to do? Well, First up is an attitude adjustment - accept what I can't change and just get on with it. When it's winter I have to make my plans to minimize the negative impact of the cold and dark, and then just get on with my life. I wear clothing that keeps me as comfortable as I can be and I let fashion fly out the window when I need to. In the summer I don't deal with the heat and humidity any better than the cold, and in some ways it is even worse. I can add one more layer if I'm cold, but if I'm too hot, there isn't much more to do except choose to slow down, conserve my energy and stay comfortable. So, I guess what I like most about spring is that it is sweet and it treats me kindly. I don't need to strategize, I can be outside and just enjoy all the things about the season that nourish me.

Day 241 - Fibro is Not Progressive But I'm Feeling Progressively Worse

The first few years after I was diagnosed with fibro and fatigue I was divorced and living alone. I was having a rough time and as my condition continued to worsen, I was forced to take a six month leave of absence from my job. It was frightening to live alone and be so sick. There were days I just never lifted my head off my pillow and I didn't eat or drink anything all day long. Other days I perked up and was able to visit with a friend or spend time with my kids, who were no longer living at home. Week after week I wondered what would become of me. Would I be able to go back to work and support myself? How could I take care of my home alone? What would happen to my relationships when I couldn't be a full participant? Would I get better? I was terrible about asking for help and whenever anyone said they would do something for me I brushed the offer aside. That was probably a mistake. I did what I could do on my good days and saved the rest for another time.

The people closest to me were wonderful during that time and I shudder to think how I would have managed  without my daughter and my now-hubby. They seemed to know what I needed without my having to ask. It helped me to maintain just a little pride and to not feel so needy. My main goal for those six months was to get a handle on my health. I had been through a pretty rough time after my Dad passed away and thought that if I could drastically reduce my stress and spend some time focused on getting better I could turn things around. So during that six months I went to a local holistic health center. I started weekly physical therapy sessions as well as aqua therapy in a heated pool. I went for acupuncture every week, I took vitamins and supplements and Chinese herbs and I still I didn't get better. I went back to work rested, but I was still struggling.

What makes me very concerned is that I look back at that time, nine years ago, and I was doing better then, than I am right now. I think it was this time last year. or maybe the year before ( I can't remember) that I took six weeks off because I just couldn't push any more. Early spring seems to be my very worst time of year - I guess the stress of winter takes its toll. I'm hoping things will start to improve and everything I read suggests that fibro and fatigue are not progressive. But it sure feel like it is. I don't know why, I'm doing more for my health than I ever have, but I am just not functioning the way I used to be able to. Even when I was out on medical leave I wasn't as sick as I am now. As a matter of fact, until recently I rarely used the word sick to describe myself. That has changed and I am certain this is not an attitudinal shift. I am still positive and optimistic - I just feel crummy a good percentage of the time. I'm really tired of being sick and tired.

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.