Monday, August 15, 2011

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.
 

Sunday, August 14, 2011

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!

Saturday, August 13, 2011

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.

Friday, August 12, 2011

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.

Thursday, August 11, 2011

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.    

Wednesday, August 10, 2011

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.

Tuesday, August 9, 2011

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.

Monday, August 8, 2011

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.

Sunday, August 7, 2011

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.

Saturday, August 6, 2011

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.

Friday, August 5, 2011

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.

Thursday, August 4, 2011

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.

Wednesday, August 3, 2011

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.

Tuesday, August 2, 2011

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.

Monday, August 1, 2011

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.

Sunday, July 31, 2011

Day 350 – A Migraine with a Crash or A Crash with a Migraine?


When I wake up with a migraine is it because I am having a crash or do I have a crash because I started my day with a migraine? It's kind of like the chicken and egg question and regardless of the answer, when I start the day with one of my monster headaches, it does not bode well. This was a couch day and it was a rough one. I couldn't be up for more than a trip to the bathroom and I felt like my get up and go got up and went - totally. I felt really wiped out with zero energy for anything. What a waste of time to be on the couch when the sun is shining, there's a soft breeze blowing and I am in a place that looks and feels like heaven.

We were up in the mountains with friends for the weekend and had plans for a dinner cruise tonight on one of the big lakes in the Adirondack Mountains. By mid-afternoon it was clear that I wasn't going to be going anywhere today. Some crash days start to turn around in the late afternoon and I can actually have a pretty good night even though the day was a washout. When we called to cancel the reservation, we were told the full amount for the night-time cruise would be placed on my credit card. That wasn't what I wanted to hear, and it didn't set too well with me since we had given four hours notice. But I understand that they might not fill those seats and they also have to prepare food based on reservation numbers, and so on. Our friends generously said they would pay their share, but that made me feel terrible, too. I didn't want them to have to pay for an experience they didn't have because of me. I finally convinced them to go ahead without us and have a good time.

My crash days can complicate things. As it turned out, we got a call back from the boat company and our money was refunded, in full. Everybody heaved a sigh of relief and it simplified our decision making. It's hard to be the one that causes the change in plans. It happens a lot and I don't feel very good about it. I'm not feeling guilty, per se, but more like I've let folks down. No one blames me and I am usually the one that is harder on myself in these situations. I am getting much better at letting those feelings pass through without dwelling on them or making a big drama out of it. If I could have gone out and had a fun evening I certainly would have. A crash ruins my plans too, not just everyone else's. My hubby and our friends went out for their 'last night here” dinner at a local spot. I'm thankful that I'm upright and able to finish my blog. I'll grab some yummy left-overs from the fridge and finish my day working on getting my energy back.

Saturday, July 30, 2011

Day 349 – Responding to Change and Living My Life

Change happens. We are up at the lake and the water is way down. There hasn't been much rain this summer and it shows. We had a rainy spring and the evidence of that is clear, too. The beaver lodge along the shore used to be huge, but the spring floods washed way the top layer of the den and the neatly trimmed pieces of wood that were crisscrossed over it are strewn through the woods along the new water line that was formed as the water come upp on shore. There's more muck along the water's edge and the dog's feet get all gunky after he comes out of the lake from a swim. The pickerel weed is almost gone, drowned by the high waters and so the lake looks a bit wider, and that's nice. Our path to the lake is overgrown because the trees the beavers chewed have died, and the canopy of leaves is gone. So now instead of a soft forest floor of mulch, the weeds are enjoying the new sunshine and they are growing in new places. Every year it looks a bit different, but always beautiful.

The changes at the lake seem dramatic because we aren't here all the time to see the slow transformation or even experience the big events, like the flood. We're up here one time and it's one way, and the next time it's noticably different. I like that change happens and that we can witness the transformation nature creates. Changes in the woods aren't good or bad because nature has a plan for every felled tree, for every new plant and for each animal because they plays a specific role in creating a robust system. The changes here are a metaphor for the changes that I go through as a result of my health issues. Some of the changes are dramatic, I wake up one day and there they are, but many other changes are more gradual and I don't notice their impact until they have been around for a while. I try to make note of improvements, but it takes a while to be able to say, for example, I'm not getting migraines the way I used to, or my pain level is much better. There has been slow but steady progress with many of my symptoms so now when they do appear, it feels out of the ordinary, more like a thunderstorm than the steady rains of springtime.

It is important to be self aware with my health struggles and improvements, but I have to take notice without being overly involved with every ache and pain. I have to live my life with a focus on what I love and what I need as well as what I can do for others. If I focus primarily on my symptoms, my world gets very small very quickly – I am so much more than my symptoms. Sometimes I have to be patient and wait for changes to happen. Then, over time, improvement occurs and then it becomes clear that I've made real progress. The beavers living in their lodge, had to wait out the flood and as soon as the water receded, they got right down to business fixing things up. That's the way I like to live my life with fibro and fatigue. I will hunker down when things are rough, but as soon as my symptoms recede I am back to my life and I go at at full tilt. I have to make the most of every good day. And just in nature, it's my responsibility to focus on keeping my system healthy and in balance.

Friday, July 29, 2011

Day 348 - Stress Reduction - Count My Blessings

One of my favorite ways to reduce stress and to feel better about whatever challenges I have going on in my life, is to count my blessings. When I can focus on what is good, I am able to put whatever is troubling me in better perspective. This afternoon I had a really neat experience that reminded me how very blessed I am. Way back in May, my hubby and I traveled up to our cabin and spent the weekend relaxing and taking advantage of the beauty nature has to offer. When we go upstate, we try to support local businesses because they depend heavily on tourist dollars and there are a few shops we go back to time and again. I have a favorite shop in a town called North Creek and I purchased a couple of things for the cabin as well as two silver cuff necklaces. One necklace was for me, and the other was a gift for my step daughter. I was very pleased with my purchase and I couldn't wait to wear my the silver necklace and to see if my step-daughter liked hers as much as I liked mine.

When I got home from our trip I could only find one necklace, the one I had put in a gift box for my step-daughter. The other necklace, as well as the other items were in a small gift bag, but nowhere to be found. I looked everywhere I could think to look and was finally convinced that the next time we went back to the cabin, I would find that bag. But I was sure I had packed it in the car, so it was a real mystery. Knowing my fibro brain, I couldn't be sure I was remembering correctly. So here I was left with just the one, very pretty silver necklace. I have to admit, that when it was time to give the silver necklace to my step-daughter, it was very hard to part with it, because I loved it so much. But, I gave it away, just as I had planned and was happy that she liked it. When we got back to the cabin in July it was clear that I hadn't left it there and it remained a mystery as to how it could have just disappeared. Oh, well.

Last night when we got back to the cabin, the message light on the land line phone was bright red, so I played back my messages. Imagine my surprise when I heard from the shop in North Creek saying they had my bag! The fella from the town dump found it and returned it to the store. The shopkeeper searched my name on google and tracked me down to let me know that she had my items waiting for me! Seems when my hubby took the garbage out of the back of our vehicle, the gift bag dropped out without him noticing it. The man at the town dump picked it up and then drove thirty minutes to return it to the store, hoping they would figure out who it belonged to. Incredible. I count it among my blessings to be able to spend time in a little town that knows what honesty and integrity means. I am blessed that there was someone willing to go out of his way for a gift bag of trinkets, just because it was the right thing to do. I am blessed that the honest shopkeeper didn't just put those items back on the shelf to sell again. I keep shaking my head in amazement. What are the chances?? Actually, pretty good when counting blessings is a way of life.

Thursday, July 28, 2011

Day 348 - I'm a Medical Consumer - Please Do No Harm

I was reading today that healthcare is the place to go for a profitable career - partly because of an aging population, but also because there is profit to be made in the industry. One line in the article stood out because of its absurdity. It stated, "Consumers often become even sicker through accessing the healthcare system, thereby generating repeat business". That is a pretty powerful statement and one I have heard before. One of my biggest concerns in being treated for a chronic condition is that I am going to need to manage this condition for my entire life. That means if my meds have serious possible side effects, I could be doing damage to my system and then that damage would need to be treated. Many meds that are promoted for fibro care are newer meds, or meds that started out being used for another purpose. The long term effects of these drugs is largely unknown, so I have to be an informed and savvy consumer. .
 
This situation creates a real dilemma, I need meds but I also need to make sure the meds do no harm. I have been offered just about every drug there is for fibro and fatigue by a good number of physicians who had no other options. I tried some of the meds they prescribed, but had immediate side effects that were intolerable. That's probably a good thing because those signals from my body let me know this was a drug that could have created other problems for me. Some doctors were okay with my not wanting to continue a med, others weren't very supportive. That is until I found my Lady Doc. She is a holistic physician and she appears to be very good at putting together a plan for me that helps without hurting. I am on a number of meds and supplements and I have zero side effects. The supplements I take are supported by research as being effective and I have read up on a good number of them because I want to know what I am taking. Some of the meds I am taking have been around for a very long time and that gives me a sense of confidence.
 
Individual doctors seem to me to be sincere and I appreciate their point of view. But I have to make my choices and do what I believe is best for me over the long haul. I have had a couple of doctors say I was non-compliant, which is a nice way of saying I wouldn't do what they wanted me to do, I read, I research and I ask questions. I believe it is my responsibility as a patient to know what course of treatment I am involved in so that I can do my part to comply. There have been doctors who were impatient with me when I had a question or didn't understand what they we saying. I stayed with those doctors for exactly one visit. I remember one doctor in particular who had me near tears because I didn't understand the results of a particular test and I needed more information. His tone of voice and his dismissive manner made me feel uncomfortable. So with test results in hand, I moved on to another more compassionate physician and got the answers I needed. I continue to ask questions and look for answers. This journey is a long road and I want to feel confident that my medical choices will serve me well on my way to increased wellness.

Wednesday, July 27, 2011

Day 347 - Learning and Re-Learning to Live Well With Fibro

I don't have to like the limitations that living with fibro and fatigue brings, but if I am going to have a happy and satisfying life, I need to make peace with them. Acceptance doesn't mean I've given up on increasing my overall wellness and it doesn't mean that I won't continue to seek out the best that the medicine has to offer. I can accept where I am and continue to plan on getting better. I can rely on traditional medicine as well as holistic and non-traditional treatments to create robust health and a better mind-body-spirit connection. When my mind is at peace and my heart is open, I am open to healing that comes from many sources. Everything that is good and beautiful and pure is a source of healing and who is to say that one healing experience holds more value than another. Love heals. Nature heals. Prayer heals. Acceptance heals.
 
My struggles are part of my spiritual journey and not a single one of us escapes life's challenges, so why should I think I am unique in any way? My labels for my challenge may be different from another individuals. but who doesn't experience pain or on occasion, overwhelming fatigue? My experience is one of degrees - more than some, less than others. I am learning and re-learning lessons as a result of my experience- patience, curiosity, determination, discipline, perseverance, optimism, faith, humility and a host of others. My lessons are not more or less important than anyone else's, but they are mine to embrace. I can continue to grow and expand my spiritual awareness through this journey or I can reduce it to complaints and negativity. I want to be strong, not weak and it's the soul of me that defines my strength.
 
Each challenge I face, whether it is getting through a day when I am fatigued and unproductive or trying to figure out the next step in my treatment, is an opportunity to learn to be more accepting of myself and my condition. I don't have to be flattened emotionally every time I have a setback if I keep in mind that the expression of my illness does not define who I am or the value I have as a woman. I can feel compassion for myself and treat myself with the same level of care and acceptance I would extend to any other person that I love. The fact that I have met enormous challenges in my life helps me to be more accepting and compassionate toward others who are suffering or struggling through a particularly difficult situation. Like I said, I don't have to like living with fibro and fatigue, but fighting the fact that I am challenged is a waste of my energy. I would much rather gather my emotional and spiritual strength and work on crafting a happy and satisfying life.

Tuesday, July 26, 2011

Day 346 - Down and Out but Not Over and Done

Years ago I started saying I was sick and tired of being sick and tired. It's been one of those days. I am feeling a bit discouraged because this summer has been rough. My fatigue is getting in my way a lot more than I can accept and although I am doing whatever I can to make things better, I am sick of it all. I'm not depressed and I am not giving up. I am just taking a few minutes to complain and feel a bit sorry for myself. I figure I can indulge a bit of negativity every now and then and if I purge those feelings by talking them through or writing them down, they will pass more quickly. Denying my down days doesn't make much sense. I have had plenty of down days that have had absolutely nothing to do with fibro or fatigue and I got through them. This is no different. It's just the combination of sick, tired and down is just rough.
 
I wanted to do something today instead of just hang around feeling tired and grumpy. It was a beautiful summer day - not as hot as it's been - so getting out of the house was a good idea. I headed for a little antique shop that I like, and then I went over to visit with my daughter for a little while. It was enough to break my mood for a while, but once I got back home I felt myself go back down in the dumps. I walked the dog thinking that a bit of exercise would be good for me. The exercise was good for my body, but my mood still feels stuck. I am caught up in thinking about this hidden viral infection that was diagnosed and still not treated. I just don't know what to do. There is a chance that it can't or won't be treated and that means things will stay as they are. That will require another level of acceptance for me.
 
I have always planned on feeling remarkably better after focusing so intently on my recovery, and maybe that was just an unrealistic expectation. But, hope is what has moved me forward and kept me on track and I am not willing to give up. So far I have trusted my instincts and I think I have made good wellness choices.  It's easier to think things through when I am feeling calm and focused. But a down mood clouds things a bit and I don't make my best decisions when I am feeling pessimistic. I understand that moods come and go and I'm not particularly concerned with having a couple of down days, even though I don't like the way they feel. Last night I had a series of bad dreams so I know I am feeling ambivalent and concerned over the decision I have to make about treatment. So I am focused on doing the things I know how to do to keep myself on an even keel and I expect in a day or so I'll be feeling like my old upbeat self again.

Monday, July 25, 2011

Day 345 - I'll Be There for You, 'Cause You're There for Me Too

My friends are amazing. There are friends who have been with me my whole life and some I have met along the way. I talk with regularly with some of my friends, and others I see for coffee or a meal. I have guy friends and girlfriends. A few of my friends are relatives and others aren't, but they feel like family. There are qualities that my friends have in common that I hope they know I appreciate. My friends are people who care about others and the world. They are people that are dedicated to the well being of others and they express it in their families, their community, and their work. I have been fortunate to have dear, sweet, funny, sharp. silly, insightful, empathic, and loyal friends. I don't know where I would be without these dear people in my life.
 
All of us have had to make it through tough circumstances - life is full of them. We share with each other and somehow we always seem to make it through to the other side. One of the things I love about my friendships is the level of honesty and sharing. My guy friends are as dear to me as my girlfriends, and we have proven that guys and gals can build a solid friendship. Some of my friends share easily and others are a bit more reserved, but at the end of the day we know, without a doubt, that we are there for each other. Women who have learned to be fiercely independent know that leaning on a friend isn't a sign of weakness, it's a sign of strength and being able to depend on each other is what friendship is all about. Sometimes it's hard for me to feel so vulnerable in sharing what's in my heart, mind and even my soul, especially around the vulnerability I feel with my illness issues. But I trust my friends and I know my heart is in safe hands, just as theirs is with me.
 
The past few years I have needed my friendships as much as ever, maybe even more. I certainly have spent more time alone the past year than I have ever spent alone in my life. But even in my isolation, my friends have stayed in touch in lots of ways that have made me feel connected and appreciated. We use the current social media stuff, phone calls, email, and visits. They are full of interesting news and we always wind up laughing and finding the lighter side of life. Because of my health concerns, phone calls and visits have really suffered - there are lots of days that I don't even have the energy for a phone call let alone a visit to socialize or get caught up on each other's lives. I hope my friends understand. I've tried to be clear about why I am not so good at staying in touch, but friendships need attention. I get that a friendship can't be one-sided, and I haven't been terrific about holding up my end of the relationship. It's been a while since I've made a new friend, but even if I never make another new friend in my life, I appreciate the riches in friendship that I am blessed to share. 

Sunday, July 24, 2011

Day 344 - A Little Bit of the Party is Just Enough

My daughter called this morning and she was happy and in a great mood. As we were taking about how we were spending our weekends I could tell that she was having a good time. At the end of our conversation she said she loved her house and her program (she lives in a group home). It made my heart feel good to know that things are going so well for her. This was a wonderful family weekend. I love being around young people. I am inspired by the way they see the world and I love their energy. When I am around young people I can't help but catch their energy and enthusiasm. Little ones giggling crack me up and I love to watch the young adults that we love and care for, finding their way. It is awesomely wonderful to be a part of all the things that are going on, and even though it's a bit chaotic at times, that's just part of the joy.
 
I am committed to my family and I love to be a part of whatever is going on. An afternoon visit, babysitting, a quiet dinner or a big celebration are equally important to me. I feel enormously disappointed when I can't participate in what's going on. There have been many times when I have had to bow out of a celebration or my hubby has gone ahead with plans without me. Those times are difficult, but I have learned to take care of myself so that when I do participate I can be fully involved. Yesterday I missed out on most of a family celebration, but I was able to show up for at least the last couple of hours. My hubby's nephew and his girlfriend were celebrating their birthdays and the whole family was getting together. I stayed back and rested and finally got over to my sister-in-laws in the evening. It was worth going over, and I had a great time once I got there. Family has been very understanding and supportive and that means a lot.
 
A little bit of fun is better than none at all. I feel badly that my hubby has to go ahead to family gatherings and events without me, but I think we have things pretty well figured out. He is very easy going and that helps a lot. My kids are great about letting me set my own pace and I work really hard to be there for them when they really need me. When my kids were young and I was working I used to tell them that even though I might not be there every moment that they wanted me, I would always be there whenever they needed me and I have held myself to that pledge. It's one thing not to have the energy to do some work around the house or to be able to commit at work 100%, but I have always been fiercely devoted to my family and I will do whatever I can do to be on their side. This weekend I missed a party, but I was there to wish the celebrants a happy birthday. Once again, I couldn't do it all, but I could do some and it seemed to work out just fine.

Saturday, July 23, 2011

Day 343 - Exercise, Crash. Exercise, Crash etc, etc, etc

Couch days are getting to be a bore. I have been working on increasing my exercise and I am pretty sure I overdid it yesterday and I paid for it today. I walked over to the pool which is just a couple of blocks away, but the heat was intense. I was in the pool for less than an hour and played around in the water with the kids. I didn't think if it as exercise and that may have been a mistake. As I mentioned a few days ago, I want to increase the number of steps I walk each day and I have been taking a walk each evening, well after the sun goes down. It hasn't been warm at night - it's been hot, so the walks had that additional element for my body to adjust to. I can't be sure it was my additional activity, but my guess is that yesterday, I did more than I should have and today I just crashed.

I'm not certain that I will ever know for sure what causes a crash day. I have only been working toward my increased steps for less than a week, but even with the added exercise I haven't had more couch days, but they seem to be a little worse. I need exercise, but it is so hard to get into any kind of a routine because my days are so unpredictable. Today I head-achey, and I had that sick feeling that made me just want to close my eyes and shut out the world. I got up around my regular time, but then I was only awake for an hour or so before I went back to sleep and then slept for more than three hours. I need to find a way to build up my body without fatigue taking over every time I make an effort.

I am coming close to the end of my three month leave of absence and I am not better than when I started. This has been a rough summer and I am feeling desperate to have this turn around. I want more than this fibro life is offering me right this minute. But, I know that whatever this life has to offer, it is up to me to make the most of it. I am concerned about my overall health. Exercise is always mentioned as essential to heart health, disease prevention, stress reduction and improved overall health, as well as longevity. I want those benefits but I how to get them if I can't even take a fifteen minute walk around the block without crashing? I refuse to give up and I am going to persevere with this. I am going to keep walking and keep making an effort to make exercise a part of my daily routine, I might as well if I am going to crash anyway.

Friday, July 22, 2011

Day 342 - To Treat or Not to Treat - That is the Question

I spent the day researching the HHV6 virus and its connection with chronic fatigue syndrome. I am feeling very confused about this next phase of treatment and part of that confusion is the ambiguity of the research around the success of treating this virus and its impact on the wellness of those who are treated. I have been making a list of questions for my Lady Doc because I need to talk through these areas of concern and confusion. After reading dozens of articles, I have definitely decided that I will not take the anti-viral drug that is most often recommended to treat HHV6. It is a toxic drug with many potential and sometimes dangerous side effects. I am just not comfortable taking that kind of risk when the outcome of a six month regimen is not guaranteed.

There are many alternate treatments for treating a viral infection that I would feel comfortable pursuing. Granted, they are not identified as being the most effective, but in the scheme of things, I think I feel better going that route. I haven't talked with my Lady Doc about the treatment she would choose, I just know that she told me the treatment would make me feel worse before I felt better. The only research pieces I saw that reported any kind of success were with the more toxic anti-viral drugs. I am at the point in my treatment wrere we have addressed all of the issues that showed up in my blood work as well as addressed all of the complaints I have brought to my doctor. I am taking a supplement or a med for each symptom and I have made improvements. But this virus has me stumped. I don't know the implications of not addressing my infection and that's a question for my doc.

This past year it has felt like taking care of my health has been a part-time job. I have invested time, money, energy and effort in my determination to turn things around. I have been more than satisfied with my medical care. I feel like I feel like a am a partner with my physician and I don't think we have left a single stone unturned. But the truth of the matter is that fibromyalgia and chronic fatigue are still mysterious conditions and there is much to learn about how we contract these illnesses and how we can treat individuals so they can get their lives back. Each person expresses their symptoms differently, but we all struggle with, and share familiar symptoms. Fatigue has always been the one thing I have not been able to overcome and the thought that treating the HHV6 virus might give me back my energy is very tempting. But I have to listen to that still small voice inside me that says that the risks may outweigh the benefits. I will hold the question and wait to talk with my lady doc and hear more about her plan. 

Thursday, July 21, 2011

Day 341 - Rough Day, Tough Plan, Strong Lady

This hasn't been my best day. To start, it was hotter than Hades and I did my trip into the city. The streets felt like a furnace and I couldn't wait to get back home again, The cab pulled up to my front door and I discovered that a magnificent oak tree, that had to be a hundred years old, had been removed. The tree was there when I left this morning, and I had no idea the tree was scheduled for removal (I live in a townhouse community). I probably reacted more emotionally than I might have on a different day, but I wasn't exactly in a cheery mood after my doctor visit. My Lady Doc went over my meds and blood test results and I am continuing to make progress medically. My cholesterol is below two hundred and I have been of my cholesterol meds in the late winter. My white blood count is better and many other markers show improvement. The one thing that is not showing improvement is my level of debilitating fatigue. I am still having many days that I don't move off the couch.
 
Enter the bad news. Since lots of other things are doing well, the reason I am still so fatigued is probably because of the viral infection that was discovered in my blood work.. We started late last winter fighting a bacterial infection with antibiotics, and I needed a second round in late April, but now my doctor thinks it is time to treat my HHV6 viral infection. I am to expect to feel worse before I feel better, and from what I've read, these anti-viral meds are no picnic. I am continuing to take supplements to build my immune system and build myself up so I am ready to take on this next challenge. I do not feel emotionally ready to begin treatment. This battle is tough and I am giving it my all, but the thought of feeling worse again before I feel better is just too much to stomach. When I was treated for my bacterial infection I was on the couch for a month. I understand that this could be harder than that. It's a sobering thought. 
 
It is rough to continually battle feeling exhausted and sick. I am really good at putting on my happy face, but there are plenty of times I am all alone and I just feel lousy. I feel blessed that my body has stayed strong enough to keep me from depression, but I really understand why depression is so often partnered with these chronic conditions - continued pain, feeling sick, discouraged and disappointed creates a direct path to sadness and finally depression. I have been blessed with an optimistic nature and I can get as down in the dumps as anyone - but I seem to have a constitution that keeps me on the bright side. The thought, though, of starting this new protocol does not appeal to me. I know if I expect to have an opportunity to heal, this infection has to be addressed. I am brave, I have good support and I trust my doctor, so when we are ready to start my treatment I will approach it with courage and the intention of coming through on the other side stronger, healthier and better able to manage these chronic conditions.

Wednesday, July 20, 2011

Day 340 - It's a Heat Wave, and I'm Not Participating

We're having a heat wave and I am not participating. There is no way I am going to go out in this oppressive heat that has been hanging around here for the past few days and is expected to continue for at least a few more. I have severely limited my outside time and when I do go out it is to go from one air conditioned place to another. I cannot tolerate temperature extremes and I find myself getting all groggy and sleepy when I have been out too long on a sweltering summer day. I was busy yesterday but I was fortunate to do all I had to do in the comfort of a well cooled room and I got to take a dip in a swimming pool. I know how blessed I am to be able to control the amount of time I am exposed to the heat.
 
Up until just ten years ago, I had never lived with air conditioning, and except for the most extreme days of summer, I liked it that way. I like the way the house smells so fresh in the summer and I like that I can feel the change of seasons, Mostly my house was cooled with strategically placed fans and only the bedrooms had air conditioning, Even an air conditioned bedroom wasn't part of my summer until after I had kids and developed summer allergies. In order to get any sleep at all, I had to have a pollen-free room and air conditioning did the trick. I still like to sleep with the windows open at night, even if the night is warm. My allergies aren't an issue anymore, but central air is the new normal. On these really hot days I appreciate the modern conveniences that allow me to stay cool, comfortable and at least a little bit energized.
 
Tomorrow I have to head into NYC for a doctor appointment. I tried to change it, but the doc's other available dates don't work for me, so it's off to the city I go. It is supposed to be near one hundred degrees tomorrow so I am not looking forward to spending time in NYC traffic and being surrounded by tall concrete buildings that hold the heat. But, I will plan accordingly and make sure I carry water with me and if I feel like I am overheated I will head for an air conditioned space. I don't like to complain too much about the warm weather because it is so much easier on me than the really cold winter stuff. The warm seasons seem to be too short and pass much too quickly. It feels easier for me to cool off in the heat, than it does for me to warm up in the winter. So, I will take these days as they come, make the best of my situation and enjoy every single minute of summer, knowing that those chilly days and nights aren't so far off.  

Tuesday, July 19, 2011

Day 339 - Gotta Get My Get Up and Go, Going

Today was really hot - well into the nineties and I still had a good day. I set my alarm this morning and got myself going. I have set some goals for myself for the next few weeks and I was eager to get started. I am becoming increasingly concerned that I am not getting enough exercise. Nearly every day I read something that speaks to the benefits of regular exercise. My generation didn't grow up with the idea that you got exercise from going to a gym. I was a very active kid and as an adult I found ways to be active that didn't include a gym membership. I've spent a lot of time walking, I've hiked, done kayaking, canoeing, yoga, floor exercises, aerobics, light weights and I raised a couple of very active kids so I have always felt like I was in pretty good shape. Until now.
I still do some yoga and I work every now and then with kettle balls, but I need a regular routine that includes easier things I can do on my not-so-good days, understanding that on bad days, exercise is not an option. So today I played in the pool a bit with the kids and that was fun. I've gone to the pool a few times by myself this summer and I do like to do some swimming. It's easy on my body and I feel like it's a start. Tonight my hubby and I took a nice walk. My goal is to get out and walk every day that I can and get myself up to 8,000 to 10,000 steps each day. The past months my exercise has been very sporadic and that must change. I have to do this for my overall well being and since I have had a few good days in a row, I feel motivated to begin in earnest.
There is no significance to choosing this day to begin a new goal. It's a Tuesday in July, it's not an anniversary or my birthday or a date that signifies any particular event. What's nice about setting a goal is that this is up to me to do this my way. Today just happens to be the day that I set my mind to making a change so now it's up to me to make the change happen. Summer is the time of year that I feel most motivated to do projects and when I have a few good days I start to think about what I'd like to accomplish. Warm weather (not hot) agrees with me, so the evenings are a perfect time to start my walking routine. It was a lovely evening, it felt good to be out in the night air, listening to the cicadas, crickets and frogs. I started to work on my exercise goal and even though I am not any where near where I want to eventually be, every goal starts somewhere. This goal started with a lovely walk and I'll be back at it again tomorrow.