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.