Day 365 - If Anyone Could Beat This.....

The biggest lesson of this year is something that I just needed to remind myself about. Regardless of our situation, things can and do get better if that's where we put our attention. We do recover. We do make it through life's toughest experiences and we do find happiness and satisfaction as we move forward. That's not to say that going through life's most challenging circumstances isn't going to be tremendously difficult or that our healing will happen with slow but steady progress until one day we wake up and all of our pain is gone. There are major twists and turns on the road to recovery and when we walk that path connected to others we care for and that care for us, we are healed. If we are in emotional pain our bodies suffer and if our bodies are in pain, our emotions are involved with that, too. Everything is connected and healing happens on many levels. 

 

There was a quote I read years ago that has always stuck with me - Forget the experience, remember the lesson. I don't need to remember every wrong done to me or every time I felt physical or emotional pain in order for me to recover. What I do need to do is to use what I've learned in each situation to support me through the next challenge. I have to discipline myself mot to make the same mistakes over and over again and cause the same pain I felt a time before. If I know a certain choice is going to make life more difficult, I need to not make that choice. But life is filled with big and little choices that can impact the quality of our lives without us taking much notice. I know what I need to do with my health care and when I don't do it, I must accept the consequence. Sometimes I go ahead with a bad choice, knowing that I'm going to be in trouble, because I chose to ignore what was good for me. It can be as simple as choosing a food that isn't on my healthy eating plan, or as complicated as continuing to work when I know my body just can't handle the exertion or stress. 

 

Now that I am at the end of my 365-Day blogging journey about seeking recovery from fibromyalgia and chronic fatigue syndrome, the question for this last post of my 365 Day blog is, Have I recovered? The answer is yes and no. Am I where I thought I would be after this year of effort and focus? No. I fully expected to feel better and to have a big chunk of my life back. I don't, and in some ways I am not feeling as strong as I felt last year at this time. I am dealing with that disappointment, but I refuse to let it get me down. My Lady Doc warned me not to think of this as a one-year project, and I heard what she said. I am a work in progress and there is no end to my managing these conditions, they are chronic. The "yes" part of my answer is related to the fact that medically I am healthier. My blood work is better and I don't have the hidden conditions I was battling when I first went to see my Lady Doc. I am off all toxic meds and I am sleeping through the night. I feel confident in the treatment plan we have laid out and I expect that there are still things we can do to get me feeling even better. I am starting out on another 365 Days to recovery, except this time I won't be writing every day. I am filled with hope, optimism, confidence, and excitement. A dear relative told me that if anyone could beat this, it would be me. I believe her.

 

Day 364 - If I Didn't Laugh I'd Be a Stressed Out Mess

Laughter IS the best medicine. When I am laughing I am not feeling sick or tired or weak. When I am with family and friends that make me laugh or smile, life feels a little lighter and a whole lot less serious. Things don't always have to be so heavy and difficult, and a good sense of humor allows me to keep a better perspective on life and I can ease some of my stress and worry. I can be silly and even if no one else gets my sense of humor, I get tickled by it. Like when my hubby and I were kayaking at the lake a couple of weeks ago. We brought a rope so we could tie my kayak to his so if I got tired, he could tow me. When we first attached the rope I felt a little self conscious because I couldn't get back to the dock on my own. So when he started to paddle forward I started paddling in the opposite direction so we were going nowhere fast. He couldn't see me behind him, so he had no idea what I was doing. I started to giggle as he was saying he wasn't sure this towing thing was going to work. When he realized what I was doing he just shook his head and then we both laughed. Granted, it was a silly thing to do, but it took the focus off my needing to be towed and it lightened the moment for me.

 

Laughter does really good things to our bodies. For starters laughter brings us back into balance, connects us to others, increases alertness, helps us to better manage our pain, relaxes muscles, releases endorphins, decreases stress hormones, and increases circulation, which is good for the heart. I certainly like what laughter does for my body but what I like best is what it does for my spirit. I like to be happy. Sharing a smile makes me feel warm inside and when I am laughing I feel whole. I seek out funny moments. I like to watch funny movies or clips on my computer. I love the sound of babies laughing and I have to laugh, too. I love when I am caught up in a funny exchange or in silliness. I love to make my girls laugh and my younger daughter gets the giggles very easily. When I go to pick her up to bring her home it isn't long before we are laughing so hard the tears are falling and our bellies hurt. There are times I can just look at her a certain way and she will just burst out laughing. She's been like that since she was small and I always thought it was good for her to develop an easy laugh because life was hard for her with having to manage her disabilities.

 

Living with fibro creates a lot of stress. My fibro puts me in lots of embarrassing situations and if I didn't laugh at their ridiculousness I would be a stressed out mess. I've showed up on the wrong week for a doctor appointment, I forget to do things I intended to do, I say things that don't make sense, and I make mistakes that just make me look foolish. I have to laugh at myself and not take it all too seriously. Not every situation needs a belly laugh to make it easier to manage. A smile and an easy attitude can relieve the stress of the moment and allow me to move on. I see good humor as a way to lighten my burdens and to help me feel optimistic and uplifted. Laughter and smiles are like life's shock absorbers. Tough situations are easier to manage with good humor. Like crying, laughter provides a release of pent up emotions and after a good laugh, we feel a sense of well-being, After a happy day I am renewed, uplifted, energized and things don't look quite so bad. There has never been a pill invented that can create joy in my life the way laughter can. I will  take a dose of laughter whenever I can get it!

Day 363 - I Need My ZZZZs So I Nap Like a Toddler

A few days ago I had an interesting conversation about how crazy our work schedules are in the United States. Other countries seem to have a better sense of what we need to do to take care of ourselves and still be productive members of society. I remember traveling in Ireland and not being able to find any place open to eat in the late afternoon. Places closed until dinnertime. How civilized. And how about the idea of an afternoon siesta? Divine. Then there's the six week "holiday" in the summer when people get away from the daily grind and rejuvenate themselves. In my entire adult life I can only remember taking a two week vacation just two or three times. Once working became part of my life, it seemed that relaxing wasn't valued anymore. I know lots of folks who say they just can't sit down, they have to be "doing" something all the time. I also know people who think their business will fall apart if they stay away for a couple of weeks in a row. I also know people who would love to get away but the time and the money never seem to be there at the same time. Our culture doesn't support their slowing down.

As a working (and also a single mother) I felt like I didn't have a minute to myself. When my kids visited their father I traveled and taught on those weekends. During the week I was busy with the other responsibilities from my work as well as keeping up the house and taking care of my girls. There were two summers that I took them to the beach by myself and although we had a great time, it wasn't a total vacation for me. I don't regret those choices, but I do think that life demands a lot from us and unless we learn to take good care of our needs, we will suffer the consequences. Sleep and rest are as essential to our existence as air and water. Sleep deprivation wreaks havoc in our bodies and when we are exhausted everything becomes more difficult. When I am going through a difficult period in my life, sleep can become elusive and that makes managing stress even harder. The sleep issues that come along with fibro and chronic fatigue are debilitating. Getting a good night's sleep has become a high priority.

It is no surprise to me that the supplement I take for sleep is called Rest and Restore (from the Fibro and Fatigue Center online). A major path to good health is for me to have restorative sleep. I still have a bit of trouble falling asleep at the end of the day, but once asleep, I'm good for the next eight hours. I have learned that I must pay special attention to my sleep hygiene. I need a cushy pad on my mattress, a dark room, NO caffeine after noontime (including chocolate), a regular routine, and no snoring from the hubby. I must take my supplements (heavy duty sleep meds are just not for me) without fail. I also must build rest periods into my day. I jokingly say I nap like a toddler. Many mornings I need a nap after breakfast to jump start the day. In the afternoon I need to either rest on the couch or grab a quick thirty minutes of shut eye to get me through the evening. In addition to my naps I also need time to get away for a change of scenery and to leave all the stressful little details of life behind. A weekend in the mountains or some time at the beach always make me feel good from the inside out. Other cultures have showed me an alternative to the quick pace I am used to living. Fibro and chronic fatigue make those alternatives look very attractive.

Day 362 - Adversity, Acceptance, Meaning and a Glimmer of Hope

None of us welcome adversity. We'd be foolish to hope for bad things to happen so we could learn from them or find a golden opportunity that would turn our lives in a positive direction. Most of us like it when things are on an even keel and we feel as if there is stability and even a sense of predictability in our lives. Some of us are learning that we can weather the storms of change with particular strategies and mind sets, but that doesn't mean we come away unscathed. When we are in the midst of our misery, it is enormously difficult to see the bright and shiny side of things and find an immediate awareness of how it can be changed to our advantage. Instead, we tend to rest a while in our pain and misery - not fighting it, but almost welcoming it as an inevitable result of an impossible situation. We lean into our sadness and unhappiness, releasing the storm within us and waiting for the calm to follow. Hopefully, we don't dwell too long in that negativity and regardless of how hard things have been. Eventually, we do begin to see a glimmer of hope and we begin to rise to the possibility that things can improve, and yes, even get better than they were before.

Acceptance is a rough journey. To me it means that I take a big gulp and allow reality to settle in and then I find a way to make peace with it. Railing against the Gods for my various miseries has never done me much good. Why Me or Woe is Me seem to be pretty useless positions to hitch my future upon. Why Not Me and So What get me out of victim mentality and make my personal power more accessible. I need all of me to be fully present when I am working through a tough situation. When I give in to lower emotions like sadness, anxiety, guilt, and anger I am only hurting myself. As I have mentioned before, those emotions are my signals that something really is out of whack and I need to pay attention. I use those emotions to fuel my actions, rather than let them reside within in me beyond their purpose of alerting me to a situation that needs resolution. Those emotions turn into fear, bitterness and hardheartedness if they stay too long and I don't want any part of that.

Each time I have prevailed over a seemingly impossible situation I have felt stronger and more confident that I am capable of weathering life's storms. When a new situation comes up I can use the confidence I have built from past experiences to lead me through the ups and downs of what's next. I feel more grounded and less like a victim of my circumstance now that I have the experience of successfully coping with adversity behind me. Fibromyalgia and chronic fatigue are not life threatening conditions but they are life-style threatening illnesses. They creep up on us, taking one part of our functioning and then another until we wake up one day and wonder where the life we used to live has gone. We make adjustments, change some things, look at other things in a new way, all the while reconfiguring our lives so that they still have an abundance of hope, joy and meaning. Different doesn't have to be better or worse, it can just be different. That's where I am keeping my focus. I am in the midst of re-framing this precious life I have been given and I will never succumb to adversity. I will meet it head on and I will prevail.

Day 361 - I Couldn't Make it Without Your Support

I have learned a big and important lesson. If I do not take care of myself there is no one that can do it for me. But on the other hand, I know for sure there is no way to recover from an enormous challenge without significant support. I have had the support of my dear family and friends, my Lady Doc and the wonderful staff in her office, and the incredible people at work who have never made me feel "less than" when I could no longer meet my responsibilities. I have also found enormous support in groups of individuals who are experiencing the same challenges I face on a daily basis. The fact that they open themselves up and share their experience with courage and honesty invites me to open up and share as well. My spiritual practices support me in listening to my inner voice and knowing that there is a Higher Power that I can draw from and give thanks to. I appreciate the doctors, researchers and authors who have dedicated their careers to asking the questions that give me the answers I seek about my medical condition. I can take better care of myself because I am surrounded by emotional, physical, intellectual and spiritual support.

 

I wonder if people really know how important their support is. Little things mean a lot - whether it's a word of comfort or reassurance, or a bit of time spent together. The friend that pops up in an instant message and allows me a conversation without having to expend the energy of a phone conversation is wonderful. I love emails and all the exchange on social network sites that keep me connected without having to leave the couch. Friends who check in just to make sure I'm not lonely are a blessing. My sister has been a wonderful support and has even read each of my blogs this year. A best friend from childhood understands when I'm not in touch for a while and she always seems to reach out just when I can use a friend. My work buddies are like a shot of adrenaline. They keep me sharp and on my toes and nobody makes me laugh the way they do. My friends and co-workers have always been willing to lend a hand and go the extra mile. My Lady Doc is a fantastic listener and I have never once felt rushed or unable to finish my long list of questions and concerns at each visit. My fibro-friends have been compassionate and supportive because they really get where I am and I hope I extend sufficient empathy to them, too. And finally I just wouldn't be able to survive without my hubby and kids. They have my back and I know they would go to the ends of the earth even without my asking them to.

 

During this year of focus on recovery I have counted my blessings many times over. The support I feel keeps me grounded and allows me to focus on getting stronger and healthier without worrying that I am going to lose my friends and family because they can't handle the challenges they face in walking this path with me. I like to think that part of the reason I have such a strong support system is that when the significant people in my life have needed me - I have been there for them, so they are happy to return the favor. I know that if I need to talk, there is someone who will listen. If I need to cry there will be a shoulder nearby and I can lean into the strength that is being offered to me. When I am ready to play and burn up some of my adrenaline filled energy I have buddies that will step right up. I have always thought of myself as independent, so needing support the way I now do, is not something I was willing to admit to. But now that I am deep into my battle, it is reassuring to know that I am not alone. I feel connected and supported by people who truly care that I am okay. They show up for me whether I am flat out or upright, having a good day or a miserable one. I feel connected and that's what support is all about for me.    

Day 360 - My Illness Does Not Define Me - I DO!

If I think something is terrible, scary, impossible, or difficult - it is to me. If I think something is wonderful, awesome, possible or inspiring - well, that's true too. Perception is everything. What I think I've heard is usually what I believe I heard. What I believe makes sense to me, because I believe it. My perception is my reality and it helps me to remember that I can change my reality by changing my perception. I don't mean to say that just because I see myself as an Olympic Swimmer, I will become one. What I AM saying is that unless I DO see myself as a swimmer there is NO possible way for me to EVER have a chance to become one. Every success starts with a thought. I can apply this perception to illness - if I perceive myself as empowered, satisfied, fulfilled and whole - I am that, regardless if I have a medical condition or not. I choose my attitude and my perception. I have choice, I have potential and I have power. My life may look different than I thought it would and it may have given me pause when I think about what I have lost, but my power comes from who I AM - not what I used to be or what I don't have. There have been moments of sadness and feelings of loss as I have traveled this fibro journey, but I can decide to see those emotions as natural as I go through the changes in my life. Rather than fight them I can acknowledge they exist and then move on.

Through the years I have taken a kidding or two and sometimes a hit of sarcasm or criticism for being so positive and so cheery. I used my positive attitude to power me through the hardest times in my life. If I were not positive - I would have fallen into the abyss of despair because things were just so hard. I chose to see the bright side because the dark side was so frightening. That attitude allowed me not just to survive, but to thrive in situations that might otherwise have brought me to my knees. I have had periods of time when I had to fight to stay more optimistic than pessimistic and I took hits for that, too. When people are used to seeing me as positive, they don't take too well to the negative side coming through. But their comments about it were good for me to hear because I could use their perception to help me to clarify my emotions and get myself right again.

I have always believed that I could achieve my dreams and I have had a life filled with blessings big and small. Recently a woman that I met in a store said she wished she had my positive energy - me - with fibro - who can't drag my butt off the couch. She perceived me as having positive energy and that perception fed into my own perception of myself as an optimist. My energy isn't expressed in my illness - it is expressed in my very being. The soul of me feels light and energized, even when my body needs a rest. There are days when I am home alone and I think to myself that it feels silly to feel so happy when I am home sick. When the dark days come and I lose my grip on my lighter perception, the memory of those happy feelings draws me back into balance. I am what I call a realistic optimist. That means that I stay close to what is real and I choose to see the positive side without becoming lost in fantasy or pretending that the challenges I face aren't formidable. When I recognize and clarify what I am up against I am better able to do battle and come out strong and empowered on the other side. Only I can control what is in my head and I have learned that I am choosing to be happier, healthier, more open and more compassionate when I choose to be positive.

Day 359 - One Strong Step Forward then a Nasty Step Back

Until ten years ago, I was able to manage my various symptoms and was able to continue to work and have a fairly normal life. Years before that I had what I called "lost days" where I was so fatigued I could only lie in bed or on the couch. Those days appeared randomly or after a weekend of teaching or after a particularly challenging travel schedule or work pressures. I was troubled with migraines, IBS, severe fatigue, frequent traveling muscle pain and leg cramps, sensitivity to bright lights, medications, certain foods, and cold. I had tested positive for Mixed Connective Tissue Disease when I was just thirty so I think many of the things that were troublesome were just chalked off to that diagnosis. I accepted my various complaints as being part of who I was and never thought there was something more to find out. I didn't realize I was on a lifelong journey that would eventually bring me to my knees.

 

Some of my challenges have had a beginning a middle and an end to their resolution, others remain an ongoing process of healing at deeper and deeper levels. When I am in the midst of making my way through a challenge I soon find out that the path through is not in a direct line and progress is rarely measured day by day - it's a much bigger picture. There are gains and there are losses. Smiles give way to tears and calm is replaced by fear. When one aspect appears to be under control another flies wildly out of control. Success is relative and failure is not a considered option.

 

The unpredictability of fibromyalgia symptoms is frustrating and chronic fatigue's overwhelming energy drain is a formidable foe. I agree that I must make peace with where I am and I do accept that I am in this condition, but that doesn't mean that fibro and fatigue are a welcome visitor. I have to create my own definition of success in managing the symptoms that have shifted my life and changed the way I function on a daily basis. When I experience a few good days in a row, followed by terrible days, I can't give in to the disappointment and frustration because each string of good days is a victory. I may experience one step forward and two steps back, but each time I can score better blood results or sleep soundly through the night I have to heartily claim those victories. When one thing seems to be better and another gets worse it feels like a step back and when a new symptom appears, it's another. I am making progress in some ways and that progress is what will move me forward.

Day 358 - You are Not Alone - I Am Here With You

 Life is full of lessons - more lessons than I am sometimes willing to learn. But the lesson I learn again and again that gives me comfort, is that I am not alone. I don't necessarily mean the kind of I've-got-someone- beside-me kind of "not alone", but the very real fact that I am not alone in my journey. We are ALL, and I do mean ALL, working through something. We share with each other and we are healed. We connect with each other and we are strong. There is nothing like time together to help us to shed some of the troubles we carry, if even for just a little while and also to delight in the happiness we experience. Mothers "get" other mothers, students understand what their peers are experiencing, people in the same profession like to share their stories and feel like they are understood, and those of us battling illness need caring connections, too. I am not alone.

 

I've always been a pretty open person, but it took me a long time to be able to share the really tough stuff from my life - back when I was younger, it seemed to be important for me to be seen as happy and positive. But once I began to share more completely, I quickly and deeply realized that everyone is living a complex and rich story and we have a lot in common. I learned that there is no such thing as a perfect childhood and there are no perfect parents. I've yet to meet a person with a storybook childhood and the challenges we faced growing up are often the same challenges we face as adults. I thought that when I grew up things would be easier because I would be in charge. Instead I learned that even though life was happy, it could be very hard. My most challenging experiences were often my best teachers and managing a chronic condition continues to offer me new and important life lessons. But I can't do it alone.

 

When I began to research fibromyalgia and chronic fatigue I began to find internet sites where people shared their experiences. As those kinds of resources grew, I could see that a huge attraction to participating in the dialogue was twofold. People wanted to share their experience and they wanted to be there to offer support to others. It is powerful to be that connected. I have even noticed that when I visit my Lady Doc, those of us who have been in the waiting room together at other times begin a conversation that often starts with, "How are you doing?" That simple question opens the door to sharing and because we are on the same journey, it takes on almost an emotional short hand. We understand each other and our empathy comes from a true knowing of what it means to feel sick and tried a good part of the time. I like that I can be there for others as much as I appreciate people being there for me. When I extend myself I can gently pull someone out of their isolation and they can feel cared for and connected, too. We need each other to heal and to be strong.

Day 357 – I Study My Options and Make My Choice

I have learned that I have a lot to learn about fibromyalgia and chronic fatigue and the many treatment options available to me. I have read everything I could get my hands on, talked to people who are also suffering with these conditions and have always asked lots of questions when I visited my doctors. There are certainly different approaches to treating these conditions and I believe it is my responsibility to stay on top of things so I can make good choices about my care. I used to get really confused because I felt like I was being thrown one drug after the next with no real plan. Everything seemed to revolve around treating my symptoms and not about getting me healthy. I know we had to start somewhere, but where we started never got me anywhere.

When I began treatment at the Fibro and Fatigue Center, I read as much as I could about what they did and why they used the treatments they did with their patients. Friends and family were concerned about their “credibility” which I actually thought was a bit funny because most of the other doctors I had been seeing caused me to suffer side effects from the drugs they prescribed and they never bothered to test me for any contributing conditions like low thyroid or hormonal imbalance. I was getting sicker and sicker and they couldn't explain why. The more I learned about my treatment at the fibro center, the more encouraged I became that I was going to start to get healthier. After all, I don't just want to feel better – I want to BE better.

There's a clothing chain that says an educated consumer is their best customer. They appreciate that the people who come into their store know what they want and they appreciate that when they come to shop they know what they are looking for and that they appreciate the quality of the clothing the store carries. Well, it is true for those of us who are being challenged with fibro, fatigue or any other challenge. We need to learn about the pain we are carrying in our bodies, our hearts and our souls. Then we need to study our options and make a conscious choice about the plan we will follow toward recovery. The more we know, the more empowered we become in mastering our challenge. Some of us get over what we're fighting and some of us have to learn to continue to deal with what ails us. We can become a helpless victim of our ailments or we can become stronger and better able to deal with what life sends our way by learning what we need to know to make solid choices that strengthen us in our battle.

Day 356 – Taming Fear on a Path to Wellness

Today's lesson is about fear. I've gotten to know fear pretty well this year – it is a frequent and unwelcome visitor. Sometimes it is present in a fleeting moment and other times I have to muster up the strength and courage to show it the door because it feels powerful and unrelenting. There are times that fear has immobilized me and times when it has spurred me to action and has renewed my strength. All through this year I have been determined that fear would not overtake me and lead me into the darkness of discouragement and depression. It has been a battle and I think I am winning it, but the longer this fibro and fatigue rages on, the more difficult it gets to keep my fears at bay. My fears come up at different times around different issues. Aside from wellness issues, many of my fears are all tangled up with getting older and other things that we all seem to grapple with. But the layer of a chronic condition puts a sharper edge on each fear.

Worry, concern, anger, frustration, sadness, and feelings of loss, all have their roots in fear. There used to be a game where some kind of little critter popped up out of a hole and each player had a hammer to smack it back down. That's the way I see my fears. They keep popping up and I keep slamming them back down. When one is taken care of there seems to be another to take its place. I think about work, my relationships, finances, and being ready for retirement. I wonder about being relevant and needed, I wonder about my purpose and what I will do to remain connected as I travel this mostly solitary journey. It's funny, I even worry that I worry too much. But with fear lurking around each corner I have developed strategies to calm myself and stay on the brighter side of things. I talk, I write, I pray, I cry, I get grumpy and I work hard to put my fears back in perspective. I get back to the moment I am living and do self talk that says in this moment I am okay. Nothing bad, that I can't handle, is happening and I need to keep that focus.

I have learned to wear my happy face well and give one sentence answers as to how things are going. But the answers to myself aren't a facade and they require deep and soul searching responses. I can address my fears with a plan or strategy that keeps me on the right track. If something goes wrong I can seek ways to make it right. But it's those things can't be put right again that really dredge up my biggest fears, and some days those fears just won't be quieted. I deal with them pretty much the same way I deal with a crash. I acknowledge what is happening and admit to myself that I don't like it very much. I focus on the fact that it will pass and it's my job to take good care of myself as I ride it out. Fear is simply an emotion. It's an important one because it demands that we pay attention. I have to be good at recognizing how much energy I will put into a fear-based thought and I will respect my emotions without letting them put me in a tailspin. I am confident that love is more powerful than fear and if I focus on the positive without being a pollyanna, my fears will subside because there's not room for both love and fear in a given moment. I choose to take care of myself and that means putting my fears in their place - even the big ones.

Day 355 – Recovery Means Expecting Those Ups and Downs

Some mornings when I wake up I just know it is going to be a good day. Why a good day? Who Knows. But, realizing that the fog has lifted and a good day is possible, fills me with even more energy and enthusiasm for what the day might bring. I make a quick mental note of what's on the calendar, hoping it is something worth spending my energy on. I have gotten to the point when I am having a good day to make sure I spend my energy wisely and to do things that give me pleasure and joy. I might call my hubby and suggest we go out for dinner, or my daughter to make plans to stop by. I will look around the house and tend to a neglected chore and feel good about setting things right again. On a good day I'll pick up a book and have a read, or pick up the phone to catch up with a friend. Or, I might hop in the car and head to a small shop, just to get myself out of the house and around other people. If I was working that day, I made sure to put my effort into my most pressing calls, meetings or projects to take advantage of my available energy. I headed into a good day feeling on top of the world, thankful for the gift of being upright, alert and feeling like my old self again.

From the moment I open my eyes, I can identify a bad day. I usually have either a migraine or what I call half-a-headache – that feeling that a full blown migraine is just a pill away from blossoming. On those days I start with my regular med plus my migraine med to ward off more pain. My vision is blurry, I feel weak and like I can't sit up for long without getting light headed and sick. On those days I crash on the couch with a blanket and the TV remote in my hand, mindlessly floating through my day without any energy, focus, or motivation. I just can't move, think, create, plan or accomplish a single thing of value, except to rest my body well again. Then there are the days that start okay and crash, or start not nearly so badly and get better as the day goes on. Those days are my most frequent so at least a small part of my day is mine.

I like to count the string of good days I have in a row. I never bother to count the bad ones. If I can string three or four good days, I am in heaven! When I am in the middle of a streak, I never have any idea how long it will last, so I make the most of every minute. On any given day, I know to expect that the way I feel during one part of my day may be completely different than the way I will feel later on. I can lose my energy, or gain momentum and build it. I have learned to expect that I can't always predict my ups and downs, and it's the unpredictability that challenges me most. I have learned to celebrate my good days and take the bad days in stride without focusing too much on the way I'm feeling. I am learning that my body is not betraying me when I am sent to the couch for yet another siege. It is telling me what it needs and I must listen to that message. I can ride the ups and owns like a roller coaster, choosing to know, and to count on the fact that every valley rises to yet another exciting peak.

Day 354 - I Can Know My Limits, but Not Succumb to Them

One of the hardest lessons I've learned over this past year is to know my limits. It's hard to recognize a limit, when one day I am feeling like a regular normal person and then the next I wonder if I'll ever get out of bed again. I've been advised to pace myself and that makes sense, but what exactly does it mean? Some days doing a little is too much and other days a lot doesn't make me feel worse. I take my time when I'm doing everyday tasks and I do just one big job around the house in a day. But a big job for me is doing the laundry and getting it folded and put away. Frequent breaks are built into whatever job I'm doing and sometimes I just get the feeling that I MUST lie down – so I do. I don't do more than I feel like I can accomplish without completely running out of energy, but still, my days are filled with ups and downs and my even keel doesn't seem to kick in.

I've noticed that when I can be with friends and family, I ride the energy that comes from sharing, laughing and having a great time. But the next day it's as if the person that was at that gathering has left and gone. When I have a huge outlay of energy I have to replenish it with a day of rest the next. I have learned that it is a good thing to say yes to things that are once in a lifetime, regardless of how I've been feeling. I won't miss a wedding, a christening or a milestone birthday, but I say no to the smaller events around the big ones – like wedding and baby showers. Those kinds of social events just sap my energy and I have convinced myself that my presence isn't missed all that much, anyway. I don't go to social events when I only know one or two people that will be there. Meeting new people and making an effort to stay in the conversation drains me very quickly, and the same is true for large social gatherings – they just make me tired and I would rather spend my energy on the dears ones in my life. I say yes to seeing friends once in a while because I don't want to lose touch, but I stay away from too frequent visits or visits that include larger groups.

I say no to way more things than I say yes to, and that used to make me feel concerned that I am getting wrapped in a safe cocoon of fear rather than just making smart choices. Do I say no because I am certain it's “too much”? Or do I say no, just in case? Is it wise to err on the side of caution or should I just throw caution to the wind? I am not so concerned with these things any more because I'm not certain that one way of deciding is better than the other. I am learning to take good care of myself and I have made peace with the fact that I can't do everything. I can choose to do the things that mean the most to me. When I have to say no, it is because I am listening to my body and I don't really have another choice. I've pulled back from many things that were once a big part of my life, that's true, but not because I don't want to do the things I've said no to. It is because I am now in a different place and my health has taken front and center stage for the time being. My job is to see the big picture of my life and then make my decisions. What I do know is that I cannot give in to this fibro and fatigue. I must do what I can, when I can, and it is up to me to make the choices that will squeeze out every bit of sweetness life has to offer.

Day 353 – Just Take it One Step at a Time

I started a one-year program to increase my wellness and I really did think that after a year I would be well on my way back to my old life. I admit to getting caught up in the possibility that there were going to be huge changes and that my life as I knew it, would be returned to me as kind of a prize for doing what I was supposed to do. I have put a huge amount of effort into my recovery plan and I believe my Lady Doc has made the right decisions for me at every turn. I did my part. I showed up for every single doctor appointment, took my meds, did the IVs and the shots. I took time off from work, I rested and I watched what I ate. Each day I made a conscious choice to put wellness first. I slept when my body told me to sleep and I made sure I reduced the stressors in my life. I cut back on things that were too challenging and I looked for things to keep me motivated and inspired. I prayed, I meditated, I read, I listened to music that up lifted my spirit and got me moving and I read books that led me in the right spiritual direction. I did my best and for that, I have no regrets.

So what's the big lesson here? Well, I think it's that I have to take things just one step at a time. No projecting into the future, no looking back with frustration and regret that I didn't do one thing or another at a particular time. Today is the gift I am given and I pray that I will get a long string of tomorrows. But in terms of my recovery, I only have to consider what is happening today and at this moment because this moment is the only thing I can count on – no one is guaranteed a future, or a particular kind of future, for that matter. Lingering in the past depletes the energy I need to get through today, energized and enthusiastic. I was warned by some not to get my hopes up as I began this journey of recovery, and by others to keep the faith – that if anyone could get there, it would be me. Well, my overall progress has fallen somewhere in between those two possible realities.

It is easy to get caught up in the trap of planning on how well I am going to feel in a day, a week, or a month from now, just because I am doing what I am supposed to do. I can't explain why I am doing okay one day and the next I am flat out. I can't explain how my body knows I need sleep all day, one day, and on another, won't let me to to sleep at night. I can see that my overall health has improved and that the silent conditions that were impacting my over-all health are finally under control. I see that I still have unresolved issues that are going to take some figuring out. Each day I get to make choices that will lead me in the right direction or down a different path, that might not serve me as well. It is totally up to me. There are days when I miss the mark, I don't take my scheduled meds because I forgot to bring them along or I eat something that's good for my soul, but not my health. But the best thing about focusing on taking it one step at a time and staying in the moment is that there is another moment waiting for me when I can choose to do what's best. Another lesson learned.

Day 352 – Everybody is Recovering From Something

I've been reading a lot lately. I'm a fast reader so it's fun to just plow right through a novel and get the beginning the middle and the end all within a day or so. Lives unfold with all their drama and I feel connected more to some characters than to others. There are times that I like the characters so much and I relate so much to their story that I hate to see the book end. I feel like I'll never be with those people again and it makes me a little sad. What seems to be true as I move from one novel or piece of non-fiction to the next is that we are all recovering from something. For some it's family drama – an addicted, angry or unloving parent, illness or an early death in the family. It can be about misunderstandings that create separation that can't be healed or about siblings that can't seem to recover from rivalry and jealousy. Others have to deal with secrecy or devious behavior that leaves scars and won't allow a person to trust. For some, they can't seem to recover from loss that comes in the form of accidents or acts of nature. At the end of the day, we all have our wounds to heal and our challenges to face, our tragedies to overcome and disappointments that leave us broken and grieving.

The fact that other people are suffering doesn't ease my pain but it does create an opportunity for me to realize that I am not alone in my challenges. There are people in every walk of life that are struggling with the changes that came about through an unexpected and difficult experience. We all want life to go smoothly and in those moments when all feels well we relax and savor the goodness that life brings. But when we are in the midst of our troubles, when it seems that nothing will ever be right again, that's the time to reach out and find comfort and solace. Everyone needs a soft place to land, a place to share fears and concerns and to know that when they share they will not be made to feel “less than”. Sometimes when I am reading a good novel I feel as if I am healing along with the characters who are meeting their challenge head-on. I recognize my pain in them and we become kindred spirits, even if only in my mind.

But it's the real people in my life that I turn to when I am tired of trying to figure things out and I am getting nowhere. It's my dear friends and wonderful family that are there to boost me up when I am feeling down and instead of just trying to cheer me up, they let me grieve and share my fear and pain. Loved ones are there for me in good times and in bad and it is up to me to balance what I share so they don't get overwhelmed. I am a listener for them as they meet their challenges and although we don't have the same challenges to face, we are certainly aware of how it feels to be overwhelmed, discouraged and frustrated. Our feelings evolve as we move through our difficulties and friends are great at pointing out the improvement and celebrating the fact that things are getting better. They are also great at reminding us that just because one part of life may be way out of balance, there are other parts that are functioning just fine and we can draw strength from that place of stability. Our lives are a story, unfolding each day filled with mundane every day things that we don't even notice as well as circumstances that seem to whack us in the side of head. It's all part of life. The bottom line is that we are all recovering from something and we can be there for each other to sweeten the journey.

Day 351 – Goin' Easy on the Fun Stuff, But Having a Good Time

I am getting pretty good at learning how to have a good time even when my energy is limited. I am in the mountains and there are plenty of fun things to do – they just take a ton of energy – energy that I can't spare. There's hiking, swimming, boating, rock climbing, and lots of other kinds of exploring that require being in fairly good shape and having good stamina. I had a terrible day yesterday and although I got up early enough today, I was only up a couple of hours when I knew I needed more sleep and headed in for a three hour nap. When I woke up I was feeling a little rough around the edges, but I didn't want to spend the afternoon staring at the four walls wishing I was doing something interesting and fun. So I had a high protein lunch, got myself cleaned up decided on an outing.

We headed out late in the afternoon to catch a scenic dinner train. We boarded the train and found ourselves sitting beside a delightful gentleman and we wound up having a wonderful conversation all the way to the end of the line. At the last stop, we got off the train and I watched the engineer jockey around the engine to send us in the opposite direction and just enjoyed being out in the sunshine. All the way down and back we had beautiful scenery and we had a delicious meal. The trip made a day that could have been a wash-out a lot of fun. Now, I have to admit that a train ride for some people isn't much more fun than watching paint dry. But even before I was battling fatigue, I loved to ride on a train. I do the trip in to see my Lady Doc by train and it always feels like a bit of an adventure, so a long train ride felt like a great choice.

It's important that I find things to do that work with my energy level. I've had the experience of doing something for fun and finding that I have over-extended myself and I'm finished before the event has ended! It isn't fun to be out and about and all of a sudden feel like the energy has drained right out of me, and I have to head right back home. My hubby and I love car rides and we love to find new places to explore. He usually gets stuck doing the driving so today's train ride was nice because it was perfect for me and this time he could sit back and relax, too. There aren't many aspects of my life that aren't impacted by my fibro and fatigue. It's pretty annoying that having fun becomes something I have to carefully plan so that I can enjoy what I'm doing and then make sure I'm not setting myself up for a crash the next day. I'm learning that taking care of myself can means that I still need to have fun and do things that are playful enjoyable and of interest, if I am going to remain in balance. A good, old-fashioned train ride is just my speed.