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

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

 

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

 

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

Day 357 – I Study My Options and Make My Choice

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

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

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

Day 356 – Taming Fear on a Path to Wellness

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

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

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

Day 355 – Recovery Means Expecting Those Ups and Downs

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

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

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

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

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

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

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

Day 353 – Just Take it One Step at a Time

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

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

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

Day 352 – Everybody is Recovering From Something

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

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

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