Day 291 - Balance is the Key - Always and in All Ways

Today was another beautiful day - start to finish - warm and sunny and just about perfect. My hubby was out tonight at a work event and so I was on my own once again. I didn't feel like wasting such a beautiful evening so I got into the car, rolled down the windows and took a drive over to an area called The Great Swamp. It is exactly what it sounds like - a great big swamp - but it's pretty and peaceful. There is a boardwalk that winds through the swamp where you can see lots of small pond animals like frogs and lizards as well as lots of different kinds of birds. I haven't walked the boardwalk in a long time, but driving through reminded me that it's something I'd like to do again soon. My evening drive was a mood lifter, I loved feeling the warm summer air and smelling the musky sweetness of the swamp.

 

Dusk is my favorite time of day in the summer. The sunlight is soft and dappled and the heat of the day has subsided a bit. I like to sit outside with a tall glass of iced tea or out on the back porch or, every once in a while, a relaxing drive through a pretty place is fun, too. I am amazed at how many beautiful places there are near to where I live. My county has more parks than any other county in New Jersey and there are beautiful and interesting ponds, lakes, rivers, reservoirs, historical sites, quaint towns, deep woods and mountains close by. There is no shortage of places to go to feast the eyes and feed the spirit. When I am lonesome, nature can be very good company. Lately I have been feeling the effects of spending too much time alone. I am a people person and this medical leave, while giving me ample time to rest, and have my stress reduced, isn't meeting my social and emotional needs. I often find myself seeking out some aspect of nature to soothe me. 

 

Balance is the key - always and in all ways. I have to balance getting well with staying well. I can find things to do, I can enjoy the quiet, I can use nature to help in my healing and I can appreciate the fact that I have the luxury of a medical leave to tend to my health issues. But I am a complex being and I have to pay attention to everything at the same time - the physical as well as the emotional and spiritual sides of me need to be nurtured, too. I am one month into this leave. I am not making terrific progress with the way I feel, and that's okay, I know time is on my side in that regard. I also know that this loneliness I'm feeling has an easy fix. I need to make sure I get out of the house every day and spend time around people. As I start to feel better, I can make plans to meet a friend for lunch and I can make sure I make a phone call or two each day to stay connected. The social side of things is an easy fix and I am the one who has to take the initiative to make sure it gets fixed. 

Day 290 - Keep it or Let it Go - I Don't Know

We spent a long weekend at our cabin in the mountains. It is nestled deep in the woods on a sweet little lake and it just couldn't be any prettier. When we first used to go up, we spent the weekend hiking or out on the water in our kayaks or canoes. We spent our time walking in the woods, or sitting on the dock, watching the ducks swim by, or the beaver flapping his tail at us as he swam to his den along the water line. We walked with the dog and it wasn't unusual to walk one place or another, all afternoon. Now I'm questioning whether the cabin is a good idea anymore. Our trip involves packing clothing suitable for the mountains, getting things for the dog together, getting the cat situated, making sure we have all the sheets and towels we need, some staples from the grocery store and then loading it all up in the car for the four hours it takes to bring us to our little slice of heaven.

Once we get to the cabin the car gets unpacked and we start to get things put away so we can settle in and enjoy our time. The dog loves to be in the woods so as soon as everything is out of the car, my hubby calls to him and they head down to the lake to make sure it's still there, then they wander around a bit just to check things out. I used to head down to the lake right way, too, but now I don't. I don't do a lot of the things I used to and I miss that. Just like at home, I am spending more time alone in the cabin while my hubby does his thing outside. Saturday I spent the day sick and sleeping. What a waste. I sat in the car for half the day Friday, cleaned the porch in the afternoon, went out to dinner and that was it for the day. Sunday was better - we started slow and then went out for lunch at a lovely cafe that makes yummy soups and sandwiches. We then visited with some shopkeepers who have become friends. I cooked dinner and we watched a movie. It was just enough of a day for me.

Monday meant straightening up the cabin before we left, making the bed, packing our suitcases and gathering up the re-cycling and garbage to take to the dump. I packed a lunch so we could eat on the way home and save some time not having to stand in line at the always too busy highway rest stops. The trip wasn't too bad coming home, even for a holiday - we made it in four and a half hours with just one stop. The weather was perfect, the travel uneventful, but I am starting to question if it's all worth the effort. For me, it's always about the amount of effort I have to expend to do what I enjoy. I have to wonder if it is worth the long drive and the day of recovery it takes to get to the mountains to relax. It isn't as much fun as it used to be and I feel terrible that I can't join my hubby in his activities. In addition, I feel like this is just one more way I am limiting his enjoyment of life because I don't have the energy to participate. I don't know what to do. I'm going to have to sit with this one a bit and see what unfolds.

Day 289 – This is Not Just About Me

Years ago I studied family systems and the basic concept was that when one person in the family is sick (with whatever) the entire family is impacted. I can't even begin to think about how that wouldn't be true. Much of the research had to do with addictions and family dysfunction, but I do believe the same principles apply when talking about a family who has a member dealing with chronic illness or another kind of challenge that takes center stage in the person's life. It's pretty simple, really. If one adult isn't functioning, another adult or family member has to pick up the slack - it doesn't matter why the imbalance is present, what matters is that the family balance is put out of whack and one or more family members are pulling more weight. Lives are changed and characteristics develop when in the midst of learning new coping skills. The new skills may serve us well in the crisis situation, but can set us up for difficulties later when our set of skills is no longer appropriate in a new situation. When one family member is in crisis, everything changes.

I've talked with my hubby any number of times about how he is feeling about dealing with me and my medical issues. He always says he's fine. Yesterday I spent the entire day sleeping – he puttered around the house without me around and made the best of the situation. I rallied enough to help prepare dinner, but I wasn't much company the rest of the day. It has to get tiresome to be the one who has to hold down the fort all the time. This is a holiday weekend and we're not doing much celebrating or socializing. When we ran out to the store, we ran into a couple of friends who are in the same situation we're in. One partner has fibro plus some other undiagnosed conditions that keep her feeling crummy and frequently visiting doctors to get some relief. She was saying the exact same things I've been saying to my hubby about the burden of caring for (or even listening to) a partner who is struggling through a difficult challenge. We both feel badly to have created the burden and wish for our partners to take good care of themselves, despite having to deal with our challenges.

We both have encouraged our partners to take time away from helping us to manage our challenges to have some fun and to socialize without us. My hubby recently visited with his brother on a trip to California. He has also traveled to idyllic St. John in the US Virgin Islands and the state of Oregon to spend time with his brothers, without having to worry about me. I encourage my hubby to attend social events connected with his work and not to worry that I am not included. He spends time with our kids and I am not with him every time and even though I wish I was there, he can't stay home because I am not well. My husband certainly spends lots of time with our dog – walking him, exercising him at the dog park, or signing up for classes with him and those activities keep them both busy and entertained. Anyone coping with a partner or even a child with a chronic condition needs to take care of their own well-being. It's like the advice on the airplane – adults put your own oxygen mask on first. You can't take care of someone else unless you are also tending to your own needs. So, as much as I appreciate being looked after – I fully recognize that there are others priorities in my family that need attention, too.

Day 288 – Smarter, But a Day Too Late

Today was a washout and it was my own darn fault. I should know better, but I wasn't thinking and because of my cluelessness, I spent an entire warm, beautiful, sunny day sleeping in my bed. What a waste. I'm pretty sure I know what caused my crash, but I am surprised at how hard it hit me. Late yesterday afternoon, I was cleaning up the big front porch at the cabin in the woods and there was a good amount of pollen that had drifted onto the floor and the furniture. So I got out one of those floor cleaner thingies with the removable cleaning pad and slowly soaked up the yellow film. I was very proud of my progress, which I could see clearly with every swipe. I was careful not to touch the soiled pads because of my allergies. While I was doing the floor, my hubby was doing the furniture, using a damp rag so the pollen wouldn't float in the air.. I was good for about fifteen minutes then my throat got scratchy and I began to sneeze. I went inside and took a non-drowsy allergy med and finished up the job.

Through dinner I could feel my throat getting more and more raw and I was aggravated that I wasn't smart enough to stay off the porch and and away from the pollen. I kept feeling worse and worse and I could tell it was going to be a long night. I learned a while back that pollen gets on everything so I washed down the dog before he came in the house and after we changed out of our outside clothes, I made my hubby towel off his hair and I did the same before climbing into bed for the night. I guess what we did wasn't enough because before long I was in full-blown allergy mode sneezing, blowing my nose and dealing with a horror of a sore throat. I was up a good part of the night just drowning and blowing and cursing myself for being so dumb.

Self-acceptance is one thing – but acknowledging a really, really bad decision is part of life, too. I have learned, sometimes the hard way, that anything I do that puts stress on my body, just hammers me into a crash. You wouldn't think that a bout of allergies would have anything to do with fibro and fatigue, but it is all connected. One thing doesn't happen in isolation of another. I have got to be diligent in everything I do if I am going to feel at my best. Sleep matters, what I eat matters, my activity matters and unless each of my systems is working in peak order – that matters, too. I have had to learn this lesson many times over, because I don't expect to be laid low by a particular choice I've made. But over time I have created a mental list of do's and don't's that I adhere to, so as not to cause extra problems. Dealing with my allergies in a sensible way just went on my list – but a day too late. Oops.

Day 287 - Taking Care of Myself by Both Being and Doing

I'm sitting in the library in a little town in the mountains, and I was wondering what I might think about today for my blog. I sat my laptop on the table, hooked it up to the internet and looked up to find a list of "33 Ways to Take Care of Yourself" posted on the wall in front of me. Imagine that, food for thought right in front of my nose. Lots of things on the list are pretty logical and certainly things I've done, or seriously considered doing. Just about everything on the list makes sense and I could see incorporating any of the suggestions into my overall plan to nurture myself while I am out on sick leave. There are a few things listed that I haven't thought about that do hold promise - even if just for a little bit of indulgence. The list could be divided into things I can be and things I can do. Some of them are a combination - like taking a walk in the woods, or soaking in the tub. It's kind of like doing something that helps you be.

 

I like that notion very much. When I choose activities that allow me to quiet myself I find I become more energized. After a long, quiet walk near the water I am engaged in the walk, but feeling inspired by the beauty and I come away feeling both relaxed and energized at the same time. It's like I am feeding my soul and my soul responds with positive uplifting feelings that energize my very being. When I sit quietly and look at old photos, I can remember happy times and bring back warm feelings that are triggered by the people, places, things, and experiences that have been captured in the pictures. It's a doing and a being that nourishes me. When I sit on my back porch and sip a cup of tea, each sip is slow and purposeful and I take care of myself by savoring the taste, the warmth and the slow process of finishing my mug, sip by sip moment by moment.

 

Each day I look to strike a balance between my being and doing as a way to take good care of myself. It is easy to get caught up in a task and lose myself in it because I don't want to pay attention to my thoughts or feelings. People talk about managing grief or sadness by staying busy. There certainly is value in that, because it is easy to get lost in terrible grief or suffering without something to distract us. If I can stay busy, I can manage the grief, but I can busy myself right out of any feelings at all. Part of taking care of myself is being able to recognize and manage my feelings and allow myself to heal so I can move on. On the other hand, if all I focus on is being, the being can turn to inertia. So instead of using the state of my being as a tool for self awareness and healing, it can become a way to get lost in a sea of emotions, and then become immobilized. We are be-ers and we are do-ers, not one or the other. People who are most in balance know how to shift between the two so that their needs are met and they are taking good care of themselves. I'm going to pick a few of the 33 strategies and give them a try this weekend.

Day 286 - I'm Liking the Idea of a Party

I've gotten to the point that the idea of socializing takes some getting used to. I spend so much time alone and with people that I know well, when I'm thrown together with people I don't know, I feel a little rusty around the edges. I'm okay with small talk, but I find that small talk tires me out faster than just about any other kind of social interaction mostly because I feel like I have to work so hard to hold up my end of the conversation. I do better with topics of substance, mostly because we get into a flow and then I have some sense of where the conversation might go. I also know that the less I am around new folks, the more difficult it is to feel comfortable when I meet someone new. I like people and I love the idea of getting together. I just don't like the way it can drain me if I'm not feeling confident and energized.

 

We've been in our new place for just about four years and other than family gatherings, we've never had a party here. As a matter of fact, I can't remember the last time we had a bunch of people over to just hang out and have a nice evening. I'm thinking that I'd like to give that a shot, but the idea of it makes me a little, well, nervous. It is so much work to have a gathering and although I'd love the party aspect, the prep and clean-up are another story. My hubby is helpful, but I know how I get about those kind of things. I like to do the cooking, make it special and do all the fussy stuff that gets the house ready and welcoming. When I have people over, I am always way more concerned than I should be that everyone is having a good time. So, if I do this I have to set some guidelines for myself so that the gathering is as enjoyable for me as it is everyone else.

 

Summer is a great time for getting together and I think I might just take the leap and plan something for the beginning of July. We can be outside and there is something special about  warm summer nights. We can do food on the grill and enjoy fresh veggies and fruits and a big ole watermelon for dessert. I can make it simple and I can take the pressure off by taking myself off the hook of being responsible for everyone's good time. I need to find ways to continue to enjoy being with friends that feel comfortable and manageable. I'm thinking that if I can plan something while I am off from work, it will allow me to get ready for the event without it taking too much out of me. At this point it's just a thought, but every action begins with an idea and the idea of having a fun night with friends sounds pretty good to me.

Day 285 - Retail Therapy Isn't Covered by Insurance. Drat.

Retail therapy works - it's a shame it's not covered by insurance. I've been working on acceptance and continuing to re-define my boundaries. I'm doing pretty well with my level of acceptance and living happily even while one part of my life isn't where I'd like it to be. That doesn't mean I won't have days that I fight it or mourn my losses, but overall I'm doing okay. Today was a beautiful sunny day. I felt pretty good for most of the day and then had a deep sleep in the afternoon that left me feeling groggy, grumpy and a little bit sad. So I hopped in the car and headed for my favorite craft store for a little retail therapy and to find something to motivate me.

Some people shop for shoes, handbags or clothes for their retail therapy. I love colors, textures, paper, fabric, beads, wood, markers, colored pencils and potential. I grabbed a cart when I got into the store and started my search. I wandered down the yarn aisle and thought about taking up knitting. I looked at cupcake art, stickers, jewelry making supplies, scrap-booking, collage, decoupage and t-shirt embellishments and the possibility of making hooked rugs, Everything looked so good and held so much potential it was hard to choose what I wanted to buy. It was relaxing to just wander and take in all the pretty things that lined the shelves. When I liked something I dropped in into my cart and kept walking. After a few minutes, if I still wasn't in love with what I chose, or if I changed my mind, I wandered back to where I found it and put it back on the shelf. Sometimes I just needed to be with something for a few minutes and that was sufficient.

I was in the store for under an hour, and that was enough for what I needed. I wanted to get out and around people. I wanted to lift my mood and I wanted to find something that would motivate me to start another project. Every single thing I purchased was from the sale rack and I do love a sale. The one big item I purchased was forty per-cent off because I had a coupon. Sweet! So I left the store with two small bags of really good stuff that will help me to pass the time for a few afternoons. I don't like to trade one problem for another. My definition of retail therapy has some guidelines, so I make sure that what I buy is within my budget so I don't have to suffer from buyers remorse. I left the store and then stopped off for an iced decaf coffee (I had a coupon for a free cup!) and sipped it on my way home. I know this was a good outing because by the time I pulled into the driveway I was back to my old self again and I am sure I got plenty of value for the dollars I spent.

Day 284 - Tend, Mend and Be Friends

I had another afternoon of friend therapy today. A co-worker stopped by and we had just the loveliest visit. We got caught up with each other's lives and some work stuff, too. I got tired after the visit, but as we chatted I could just feel my stress melting away. I don't know what happens within a friendship between men, but what I do know what happens when women get together. There is something so nurturing and healing about our friendships. We are honest about what is happening in our lives - our joys, our fears, our struggles, our dreams. Our friendships serve us in many ways. We are in a relationship where we can give as well as receive and we can see ourselves in each other and learn how to rise to be our best selves. I don't know what it is, but for me anyway, my stress is always cut in half after a good chat with a dear friend - whether it's a guy friend or one of the special ladies in my life. Women find ways to be together in ways that match where we are in life - mommies with little ones gather and share, we find each other at our kids sporting events and help each other to accept that our kids are growing up and away from us, at the places where we volunteer and share our passion and compassion fro the people we assist, or we go to work each day and help each other to find balance in our lives. We need each other in so many was, and we know it.

For a very long time, the traditional theory about how we respond to stress was described as "fight or flight". Well, that research was based on the study of men's response to stress. And while both genders use fight or flight, when sociologists began studying women they found another kind of reaction that women used that they called "tend or mend". What that means is that when women experience stress, rather than fighting or ignoring as their primary responses, they tend to focus more on building and tending to relationships, and on giving of themselves, as a response to stress. When things aren't going well, a woman wants to fix things by staying engaged rather than just fighting it out or ignoring what's going on. An example might be that after a really stressful day a woman heads into the kitchen and whips up a batch of cupcakes to bring into the office the next morning. Or, she might meet a girlfriend for a cup of coffee after the kids are in bed, and sit together and chat about the day. A young mom might spend a bit more time reading to the kids at bedtime, snuggling close and being extra nurturing as a way to feel better. Any activity that involves tending to others, volunteering, visiting, building connection or intimacy or talking through their issues, at length, help women to deal with their stress.

I am spending a lot of time alone and I don't mind the solitude. I do mind the occasional bouts of loneliness, Spending time alone isn't stressful, but those feelings of loneliness and feeling left out can be. I absolutely must manage my stress as part of my recovery process. I will not get better if I keep beating up my body with stress hormones coursing through my system. I have lots of strategies for managing my stress and on different days and in different circumstances I call on those strategies to get me through, I can simply breathe, do some yoga or stretching, read a book. take a rest, write, watch something funny on TV or on my computer, work on my jewelry, play a game, walk my dog, play with little ones, or my most favorite strategy - tend to my relationships. I am a relationship person - it's what drives me and gives me my greatest joy. The most difficult challenge in managing my health issues is that I don't spend the time I used to with the people I care most about. Here is what I know - if I just reach out, there is always someone there at the end of a phone line, or willing to get together with me in a way that works for both of us. The people I care for know how I feel about them because I tell them. What they may not know is that they are an essential component of my wellness plan. So on top of loving the time we spend together - I have the gift of better health because of our relationship. What an amazing gift.

Day 283 - Your Energy or Mine - I'll Take It

When I am with other people I can't help but feel more energized. It works for me in a bunch of ways and against me in some others. If I need to get something done, I work best with a partner or on a team. Whether it's chores around the house, errands to run, a project at work or anything that involves numbers, two heads are better than one. When it comes to taking on something that demands my energy I need someone else to take the lead. I have learned to borrow energy and it works for me. If I am taking a walk, having the dog with me keeps me at a brisk pace. When I have to clean up around the house, many hands make light work. When I was at the office I was better at staying on task and thinking things through when I worked with my trusted teammates. Working with someone else gives me momentum, increases my motivation and creates an atmosphere filled with energy and forward movement. When I haven't got energy - there is plenty around me to share.

On the other hand, I am most likely to overdo it when I am with other people. I get caught up in the moment and stop paying attention to the signals my body sends that tell me it's time to pull back. Instead of slowing down, or bowing out, I plow through, full steam ahead and then suddenly run out of steam. It can be embarrassing in some situations, and in some instances it has been unsafe. I have found myself stranded with no energy to get home and that is not a good place to be! When I am in an energetic atmosphere I am more likely to promise more than I can deliver, and find myself unable to follow through on a commitment. That can lead to disappointment and frustration on both sides if I can't fulfill a promise. Another downside to working alongside someone with more stamina than I have is that I may make it through the particular activity but then find myself wiped out the next day because I overdid it.

I love to get caught up in the moment, whether it's something as mundane as working around the house, as exciting as a family celebration, or as engaging as a work project with colleagues. I feel happy and productive and ready to take on whatever is in front of me. I ride my enthusiasm and the excitement that comes with being fully engaged in something that has meaning for me and that I can share with others. Even just being out around town I can feel the energy of the people around me, and I get energized, too. When I am alone and not feeling well, it is difficult to feel motivated and even harder to get things accomplished. When I have someone by my side I seem to be able to think more clearly, stay better focused and follow through on what I know needs to be accomplished. There are definite benefits to sharing energy and using that to get things done. I need to stay aware that it is someone else's energy that I am riding and not my own, and continue to learn about, and focus on, the signals my body sends to me.

Day 282 - A Quick Little Nap, then Maybe Another

There's been something new going on with my sleep that hasn't happened before and I'm wondering if I'm noticing it because I'm not going to work. Most mornings I get up at a reasonable hour after about eight hours of sleep. Although I've dealt with some pretty nasty sleep disturbances in the past, lately I have been pretty much sleeping through the night (once I get to sleep) but haven't gotten to the point where I wake up refreshed. What has been happening over the past couple of weeks is that I get up, eat my breakfast and take my meds, but then I need to go back to sleep for at least an hour or so. When I was heading out to work in the morning I always felt like I needed to go back to bed, but I couldn't because I needed to get to the office. I started my day later than everyone else because there was no way I could get myself together and out the door by nine. But being home on medical leave and not working, allows me to really listen to what my body needs and it's clear to me I need more than a full night's sleep. 

 

There is a difference between this need for sleep and a crash. Yesterday was a crash. It was a sick feeling on top of the exhaustion and I slept for hours. I was no good to myself or anyone else all day. I've had bad days over the past month, but only a few super crash days like yesterday since I started my leave. I am trying to stay on a loose schedule so my body finds its rhythm. I think it helps me to get a better night's sleep and my day feels better when it has at least just a little bit of structure. This extra morning sleep, plus a short nap in the afternoon, is really helping to give better quality to the rest of my day. I feel a little more clear and I can take on a task or two without immediately feeling depleted, and then continue to rest as much as I can throughout the remainder of my day.

 

Lots of days I sit around feeling miserable - exhausted, no energy - but not sleepy. Now instead of fighting that fogged-out lousy feeling, I am putting myself back to bed each day after breakfast  - just like a little kid going down for a nap. I crawl in, pull the covers over me, close my eyes and drift off into the sleep my body so clearly needs. I have only been experimenting with this intentional sleep just over the past week or so, but I think I may be onto something. It does seem to help with the fog and sick feeling that has been part of most of my days. It worked really well for me this morning.  I didn't feel all that well when I got up so I did the breakfast thing and popped right back into bed. I slept for almost another hour and then got myself up and dressed to meet family for brunch. I felt pretty good during the visit and when I got home, I rested for a while before continuing my day. I'm not sure how much of a difference this sleep strategy will make in my over-all well-being, but anything that moves me in a positive direction is worth trying.

Day 282 - It Doesn't Take Much to Tip the Balance

One of life's toughest lessons is to learn to accept criticism with equanimity and grace. It isn't easy to hear someone else pointing out a mistake or a weakness, or to hear someone dismiss my point of view or minimize what I have to say. On the other hand, I don't want to be around only people who think like I do or believe only what I believe. I am not delusional enough to think that I am always right or that my way of thinking is always the most logical or the only path to truth. But what I do prefer is that people deal with me gently instead of with nastiness, criticism or sarcasm. When I am feeling well and strong I can take criticism in stride and explore its value or relevance with a sense of balance and calm, but not so much on a bad day.

 

Today someone left a comment on my blog that hurt my feelings. It wasn't a terrible comment, it was mostly just something that dismissed me and my experience. Writing this blog has been really helpful to me. Each day I focus on something that impacted me in some way and I work on writing from a place of honesty.  I'm only mentioning the sarcastic comment because I reacted to it badly. I spent most of the day asleep and woke up with a migraine, so I was feeling sick, tired and vulnerable so to read something with a bite in it hit me in a way it probably wouldn't have on a better day.

 

Part of coping with lifes circumstances is dealing with the good, the bad, the positive and the negative without losing balance. But today's comment piled on top of an already bad day, left me feeling a bit down and discouraged. On a good day I can deal with frustrations more easily, I can handle setbacks or life's little annoyances without making a bit deal out of it. On my good days I am much better at just taking things in stride. When I am in a stressful life space when one thing gets added, whether it's criticism or a complicated problem, it simply tips the balance. Dealing with my fibro is an underlying daily stress and when I have a bad day. the balance is already tipped, so anything that's the least bit on the negative side is going to feel magnified. So, I did what I do. I acknowledged my feelings, talked them through and let them go. Now I can look at that comment and just acknowledge that someone had a different point of view, or didn't see things the same way I did, and be done with it. That's what gets me back in balance.

Day 281 - Exercising Like A Kid Again

When I was a kid I had a plain old two-wheeler. No gears, no handle brakes and no brand new shiny finish. My bike was second-hand and I painted it blue. We lived on a quiet street and all of us speeded up and down the block and made a few loops around the connecting streets. Sometimes we rode double and it was a big deal to ride on someone's handle bars, much to our parents dismay. That bike represented freedom and I loved it. One day in September of my fifth grade year we had a school-wide assembly about bicycle safety. I don't know what I learned from the presentation but I do remember that it was that day that I was hit by a car in front of my house, while I was riding that blue, second-hand bike that I loved.

 

I got pretty well banged up when I was hit by the car and spent three months at home recuperating from a broken leg, concussion and internal injuries. My bike didn't fare very well either. The front wheel was bent in half and the handle bars were all twisted up. I recovered, but my bike didn't. My parents never allowed me to own another bike after that accident. I loved riding, so I bummed rides on my sister's bike and used the bikes of some of my friends, but that never gave me the sense of freedom that owning my own bike did.  I felt like I was being punished forever for making the very big mistake of not watching carefully and getting myself hit.by a car. I would imagine it was probably more about my parent's fear and maybe even a lack of trust in me, rather than a forever punishment, but I still missed not having a bike.

 

My first brand new bike was purchased when I was pregnant with my first daughter, It was a bright yellow, ten speed and two years ago I got my second new bike. This bike looks more like my first bike - it's blue and pretty much the same shape, but with a few gears - not a sleek ten-speed. When I got the bike I started riding in the mornings before I went to work. It was great exercise and I love riding it as much as I loved it when I was a kid. Last summer the bike didn't come out of the garage once. I just wasn't up to riding and last summer the weather was unusually hot and humid. I can't tolerate the heat and humidity so that kind of weather is not conducive to outside exercise. I have high hopes for this summer. Once this rain stops, I plan to get on my bike and start with short rides in the neighborhood to begin to build my stamina. This medical leave is intended for me to get healthier and stronger and exercise has to be part of the plan. I like that my blue bike is part of my strategy.

Day 280 - Inspiration, Strength and Hope - An Unbeatable Trio

Today I was inspired by a group of kids my hubby came home and told me about. They were at his school to use their rock climbing wall. He said they were excited and did quite well. What's so neat about this is that all of the kids had significant physical difficulties from Cerebral Palsy to Muscular Dystrophy to Spina Bifida as well as other less well-known conditions. Those kids took on a challenge and pushed the limits of what they thought they could do and they succeeded. It is inspiring for me to hear about those kids. I feel the same way when my daughter wins a medal in the Special Olympics or a ribbon for her bowling team. One time my daughter came home from her program and announced that she was going to be in the holiday play. She has difficulty speaking and with her memory, so I was wondering what she would be doing. When I asked her what part she was playing, she proudly announced. "AUDIENCE!" It was a perfect match for her skill set and she was really happy to be part of her community and cheering on her peers. Someone else may have felt slighted by not being on the stage, but not my girl. She does the best she can with what she has to work with.

It is important to recognize our limitations and then not give in to them. Whether it's those kids taking on the wall, me fighting fibro and fatigue or my daughter cheering from the front row for her friends, we all have to acknowledge our strengths as well as the things that might limit us. We have to figure out what is possible and then maybe push the envelope a bit further.  That's how we learn and grow and get stronger - we take on a challenge. Like the time my hubby and I went para-sailing. Neither of us is a fan of heights and I only go under water if I'm holding my nose, But there we were tethered to a boat in the bay, soaring above the water. It was exciting and an adrenaline rush. We were nervous and scared, but we managed the risk by doing it together. We signed on with a reputable tour, wore our safety gear, followed directions and had a great time. So when I am in challenge mode, I can look at that example and see that each small effort builds onto the success of the last and before long there is a momentum for forward movement that leads to success.

I may not succeed every time I take on a challenge, but I don't fail every time either, and that encourages and even inspires me. Inspiration gives me strength and hope. The strength comes from acknowledging that when I push past my limitations I can see that I am more capable than I give myself credit for.  Whether I am fighting an illness, or something else that has brought me to my knees, I have to face that challenge and then move forward, one step at a time to deal with it. The hope comes from seeing that when I am determined and confident, good things happen. I see that in other people's experiences and I see that in my own. There is much to be hopeful about. I do not have to climb a rock wall to prove that I am a fighter, I have my own obstacles to overcome. I approach each obstacle with as much courage as I can muster and trust that what's best for me will unfold it its own time.

Day 279 - They're Catching Up to Us Slowing Down

I can't help but notice how our culture is about speeding up and getting ahead at a faster and faster pace and the stress is killing us. Those of us coping with serious fatigue issues, for whatever reason, find ourselves out of that loop and I think sometimes we feel like life is passing us by. Well, while we're sitting and contemplating that possibility, there is a group of people supporting our way of doing things. The Slow Movement was founded in 1986 to protest the opening of fast-food restaurant in Rome. Since the late eighties, they have been working against the message that if you want to succeed you better hang on tight and pick up the pace as things swirl and change all around you. Instead, they encourage us to slow down because our basic need for love, connection, acceptance and a sense of community don't change even though the the pace of life may encourage us to put those needs aside.

Many Europeans have adopted this no-rush attitude and the results have been quite positive. Rather than people doing less or accomplishing less, they have actually increased their productivity as well as their quality of life by paying attention to what they are doing, one thing at a time, and thus experiencing much less stress. I certainly notice for myself that when I am not stressed my memory is better (so I'm not racing around looking for things I can't find or making errors because my mind feels scattered and rushed), I have a bit more energy and I feel calmer and on an even keel. This no-rush attitude doesn’t represent getting less accomplished. It means working and doing things with greater intention, quality, productivity, and excellence, with attention to detail and consequently less stress. It means reestablishing family values, friends, free and leisure time.

In accepting my current limitations, I have made many adjustments in my life. I have slowed down, I do one thing at a time, I don't rush, I prioritize and I make the most of every minute I spend with family and friends. When I was working I felt very focused at the office because I knew that my time there was limited so I felt like I was on track and got lots accomplished. My hubby has said that he is amazed at how much I can get done with the limited time and energy I have available to spend on tasks. We folks with energy issues may be onto something here. We know there isn't an endless amount of time we can spend doing chores, shopping, socializing or working at our jobs away from home, so we are in the moment and putting all we've got into what we're doing while we're doing it. I may have slowed down, but I never realized there was an entire movement backing me up.

Day 278 - No Need to Get Wrapped Up in the Drama

I have made acceptance speeches, accepted invitations to special events or an offer to go for a cup of coffee. I work to accept people for who they are and accept that things change and that I can't do it all. That all sounds so reasonable and good. But when it comes to thinking about the word "acceptance" as it relates to my physical issues, or the special challenges that I may be facing, I want to fight back - not accept it. Acceptance feels like giving in or saying that it's okay with me that I am living with a particular set of troubles, and accepting them means that I'm not going to do anything about it. When people use the phrase, "just accept it" that sounds like resignation to me. That's just not who I am. I have always thought of myself as a compassionate scrapper. I'm a survivor, a champion, someone who pushes the envelope. I like those things about me and I do not want to ever seem like I am letting go of that kind of energy.

So I looked up the word acceptance in the dictionary and never expected the definition would be so, well, positive. Of course acceptance feel great when it is something good or anticipated. But with things that are a bit less cheery or comfortable to live with, I always thought of acceptance as a kind of giving in to something that couldn't be changed or something that I had no choice but to live with. But, in reading the definition I find that acceptance is an act of receiving. It suggests to me there is grace in acceptance rather than it being a weakening or giving in to something. Acceptance is also an act of believing, a favorable reception or showing something favor. So perhaps there is something uplifting and energizing about accepting my situation that I have not understood before now.

If I can just accept my condition, my situation, or my circumstance in this very minute, without making it more than it needs to be I feel more balanced. My condition is something, it isn't everything. In each individual moment, breath and nano-second, I can choose to simply be where I am, or I can rail against the experience and use my energy to push back, argue, plead or bargain my way out of it. If I have a migraine headache I don't have to sit in a chair accepting my pain and then live in misery for the next six hours. Acceptance means that I simply acknowledge what is happening, get up out of the chair, take my pill, then rest my eyes and just let it be, until it isn't anymore. Acceptance doesn't mean inaction. It means that I know that I continue to be empowered, that I may, or may not, move into a different or better place now, or even later. And finally, that I don't need to get myself all wrapped up in the drama of my challenge.         .

Day 277 - Re-framing My Life Through the Lens of Recovery

I'm like every other person on this planet. Stuff happens and I have to cope, move on, get over it and create something new so I can put my difficult experiences behind me. I have to mull things over, figure them out and then re-define my life based on what's happened. I remember when my second daughter was born. It was a pretty dramatic time for us. We knew as soon as she was delivered that there was something seriously wrong. When she was five days old, some doctors came up from Philadelphia to diagnose her and the news was not good. Back in those days I was asked if I wanted to take her home. My answer was of course I do! But, the following years would be some of the hardest (but happiest) of my life. It was difficult to recover from the news of my daughters medical and developmental difficulties, because there always seemed to be another crisis. But what got me through was the fact that I adored my children and was determined to make the most of our situation. I felt like I was up to the challenge of raising both of my girls and I was a willing learner. There was a popular song that I loved and one line said, "In every moment there's a reason to carry on". I took that to heart and stayed determined to live my life looking for those moments. When I'm recovering from any kind of a setback, it's important, but certainly challenging, for me to keep that positive outlook.

 

We frequently associate the word "recovery" with drugs and alcohol or from a surgical procedure. We don't typically think about recovering from life's most difficult events. In the instance of substance abuse, recovery is seen as an ongoing process, as in "I am in recovery". Recovery from a medical procedure is typically given a time frame. Knee replacement has you back to walking comfortably in a month to six weeks. For bunion surgery it could be from six weeks to six months and from cataract surgery, you'll feel fine within two weeks and your eye will be totally healed within six weeks. (Seems like six weeks is some kind of a magic number for the body to heal). But recovery isn't ever just about the body, especially when recovering from a complex illness or a terribly difficult situation. Highly emotional experiences like divorce have a more open ended recovery time, with each individual healing and recovering at their own individual pace. Healing from surgery has a beginning a middle and an end, barring complications. Alcoholics mark their recovery with anniversaries because their recovery starts on a particular date, so they get to mark thirty days, ninety days and then each annual anniversary with a celebration. Those markers help in re-framing a person's life.

 

Those of us dealing with a chronic condition don't get any kind of structure or timeline for our recovery. We don't know if we're in the middle, the end, or right back at the beginning again. There is no steady progression forward and no celebrations to mark our journey. We are in a community but we don't meet to tell our stories or share a cup of coffee afterward to sooth the wounds that get re-opened after a setback. Regardless of our wound, recovery is a unique journey for each individual. The physical aspect is just one piece of the getting well process.  The dramatic life events we experience don't have a set timeline and it may be years before we feel that the worst of it is behind us. Part of the definition of recovery is to "be in a process to help us return to a normal condition or to restore what was lost". It may be that recovery for those with long standing conditions or problems needs to happen more on an emotional and spiritual level than even the physical. Coping, accepting, dealing with, and then moving forward in spite of that fact that recovery is still in progress, is a serious challenge. And what if the physical aspect of the recovery will never return what was lost? Then the recovery process must focus on quality of life and finding meaning in a new way of being.

Day 276 - A Reluctant Tourist

I was supposed to be away on vacation last week. My hubby was attending a conference in San Francisco and I was supposed to go along with him. We typically take our vacation in the spring and this year we didn't go away over spring break because we had planned on this trip. I love San Francisco and Marin County, which is just over the Golden Gate Bridge. I visited there years ago with work and loved the entire area and especially an enchanted place called Muir Woods, an old growth forest with giant redwoods. I love nature and the Pacific coastline is absolutely amazing to me. I remember eating lunch at Fisherman's Wharf and watching harbor seals playing in the water. This would have been a fabulous trip. But, my hubby went without me and he had a great time visiting with his brother, who came down from Oregon to meet him there so they could have some time together.

 

This is my new reality. Life goes on without me. It is sometimes hard to accept, but acceptance without submission is the frame of mind I choose. I have lost count of the events that I have missed over the years. I can't remember the last time I had a sit-down dinner in our home and I love to cook and have people gathered here. So that feels like a loss. My hubby loves to travel, but I am not up to being a tourist in a strange place. We do get away, but it is to places that are familiar and not demanding of my energy. There are things that I have encouraged my hubby to do without me because my health concerns can't always be the deciding factor in his choice of what he'd like to do. So he has traveled without me, mostly to visit with his brothers in Oregon and St John, which gives him a nice trip and a bit of a vacation from my troubles.

 

I always thought that once my kids were grown and I was done paying for college and a wedding, it would be my turn to explore the world. I have traveled quite a bit for work and there are lots of places I would like to visit again, and certainly new places I would love to discover and explore. At this point, my every day social life isn't even in order so travel isn't really the first thing on my mind anyway. Still, I grieve the missed dinners, family get-togethers, trips, activities, parties and all the stuff that people do to make their weekends and time away from work fun and exciting. It's the days when I am feeling pretty well and I'm functioning that I become acutely aware of what I'm missing. On my bad days I really don't care to even think about all the effort it takes to go out and socialize or go on a vacation, I just want to get through my day. I continue to be optimistic about a chance to do the things I want to do - like a cross country drive to California and a visit to places I missed by not being on this last trip. I'm glad my hubby went and had a good time because I am not going to ask him to limit his life, just because my life is feeling limited. He is there for me in so many other ways, the least I can do is to encourage him to live his life with fullness and passion.

Day 275 - A Sweet and Simple Saturday

There's a saying that the whole is greater than the sum of its parts. That kind of describes my day. There wasn't anything big or exciting that happened, but each little thing added up to a really nice day. I seem to be my happiest when I spend time with family. It doesn't matter what we're doing and usually the most casual times are the most fun. Today it was a run to a store with my daughter to return a single item, then some time at the book store with her family, followed by a wee-little power outage mixed in, and a simple and relaxed dinner. What more could I ask of an easy Saturday afternoon and evening?

 

I like to pay attention to the little things in life so I never take them for granted. After all, my life is really just a series of moments strung together - day by day, week by week, year by year. I create my life with each decision I make and every choice sets me in one direction or another. I can look back and appreciate that a single significant choice impacted my life in wonderful ways. I can also appreciate all the little decisions around it that don't have a huge, singular impact, but they are meaningful nonetheless. Kind of like a spice or seasoning that gives my life flavor. Big stuff or little stuff, it all counts and I want to be sure that I embrace every moment and make the most of it. I especially have to appreciate the days that I can get out and do some of the things I'd like to do.

 

The past week has been pretty quiet around here and it was nice today to feel well enough to get myself out of the house for a while. I am thankful for every single minute that I feel good. I love it when my head is clear and my body doesn't ache. It feels good to feel good and I want to appreciate every moment so that those moments multiply and increase and give me more health and wellness. Yesterday wasn't great, today was, and I have no idea what tomorrow will bring. That's okay. No one else knows what tomorrow will bring either. What I do know is that there wasn't any huge accomplishment today, no big party or dress-up event, but it was a very fine day. Each small thing combined with the next, created a very sweet Saturday and for that I am thankful.

Day 274 - Read It, Live It, Share It

I'm lost in another great book. I absolutely love to read and today was a good day to just relax on the couch and page through another low energy day. I like to read for lots of reasons and I expect a lot from a book. I want to lose myself in a rich story and learn something new. I want to find myself in situations and places I've never been as well as read stories that strike a chord and resonate with me. I like to read for information, for pleasure or to be entertained. I like to learn about people and what makes them tick. Ever since I was a kid, I have used days I was stuck home sick, to read and lose myself in someone else's circumstance. I'm a fast reader so I can zip through a novel in no time at all and when I am on a reading kick I can finish a book in twenty- four hours. But it's not the speed that makes me love to read, it's that I can learn about myself and others through the stories I devour.

I believe that I can learn a lot about myself through other people's stories, whether they are written as fact or fiction. There is something about finding a piece of myself in a character that is like a mirror being held up to my personality, my circumstance or my values. I can see myself in another person's thoughts and actions as well as in the way they relate to the other characters in the book. When I see something in a character I don't like, there is often something for me to learn from that as well. As I turn the pages of whatever book has caught my fancy, my thoughts go to what I might choose if I were in a similar circumstance, or how I might perceive things differently if I were in the same situation. Some books hit close to home and I am left feeling sad or vulnerable. Other times the familiarity makes me feel content and able to relate in a meaningful way. The empathy I feel for the characters in the stories I read comes from the same place as the empathy I feel for the people in my life who feel pain or who struggle.

I might not be able to relate to the setting of a story or the time in which it was set, I may not be familiar with the details that surround the characters - it's the people in the story that I can relate to. I think I can relate because each of us has our story, and we share our stories with each other, little by little, day by day. If we are lucky we have someone who will listen. I have been writing for nine months now, sharing my fibro story in bits and pieces. I have heard back from people from all over the world, who can relate to what I experience - not just in living with fibro, but in putting one foot in front of the next, and living our lives as best we can. We share our stories with each other because they matter,. We support each other with empathy and compassion when we struggle and we celebrate our successes with a sense of satisfaction and joy. Whether it's good or bad, up or down, we share. The  journey with fibro that I am living day by day, is an unfolding story that I plan to write - with a happy ending. 

Day 273 - A Day of Fibro with an Allergy on Top

It's Thursday, my day to go to the doc and do my IV and shots. The day could not have been more gorgeous. The sun was shining, the temperature hovered just above seventy degrees and there was just the slightest breeze. Perfection. People on the streets seemed to be happier than usual and it was easy to make eye contact and elicit a brief smile from the people that passed by. But I wasn't in the mood to enjoy myself. I woke up tired with my allergies flaring. I've been taking my allergy meds regularly and using eye drops that reduce the annoying itching that goes along with spring and its pollen. Such fun.

 

Anyway, this morning I dragged myself into the bathroom and like a dutiful patient, took my meds. Except I took the wrong pill. I use a non-drowsy med in the morning and a antihistamine at night, but this morning I took the sleep inducing stuff. Within an hour I was a mess. Ugh. I felt like I was sloshing through muck to get through my day. Every time I sat, I slept - in the doctor's office, and on the train going back and forth. Every now and then I felt a small burst of energy, but it faded quickly. It is one of those days when I am really sick and tired of sick and tired.

 

I got myself in the door after my six-hour trek for my appointment and I could not wait for my head to hit the pillow. I feel into an allergy-med-fibro-fatigued-it's-been-a-long-day sleep. My sister called and I answered the phone and we chatted for just a few minutes - I needed sleep more than company. I woke up some time later to the phone ringing. A friend called and our conversation woke me up enough that I could function through dinner. I don't feel like writing, I feel like getting into my jammies and climbing into bed.. So that's what I am going to do. I am going to sleep off this head-achey tiredness that makes me feel like I weigh a ton. Tomorrow is another day - I've had enough of this one.

Day 272 - Interests and Energy - Finding a Match

There isn't much going on for me these days. Life without work is certainly calmer and less stressful and I'm not complaining about having this time to heal and get better. But, I love my work and I miss the people I work with. It feels like this leave of absence is going to last forever and it's only my second week. My team has two days of meetings this week and I'm not there. I wonder what's happening and if there is something I could contribute that I won't get the chance to share. I am confident that my fellow teammates are fully capable of functioning successfully in my absence, I just don't like not being part of things. So, I have to continue to find ways to define this time at home so that I can benefit most from it.

 

So, early this afternoon I headed out to the bookstore. It's good that I get out because I have to get myself all cleaned up and I can't just hang around the house looking like something the cat dragged in, It is interesting - and fellow fibro sufferers will probably relate to this - once I get all cleaned up, do my hair and make-up and get myself dressed, I look pretty healthy. I am sure that no one in the bookstore would guess that I was out on sick leave. It made me feel a bit more energized to be doing something that was fun and manageable. I liked wandering among the shelves and pausing to pick up a book that struck me. I could spend hours that way. I made my selections then headed for the coffee shop to sit and sip while I started reading one of my books. I think I'm going to make this a weekly event - either sitting in a book store reading and relaxing or heading for my local library to do the same.

 

Taking care of myself is more than just taking the right meds and staying at home to rest. It also has to do with taking care of myself spiritually, emotionally and intellectually. Books feed me on many levels and I'm never lonely when I am deep into a book. I am looking forward to being able to sit outside and read or spend time out on my new porch once the pollen settles down a bit. I am looking to find ways to help restore my health and reducing my stress level is a big part of my plan. So I need to find activities and interests for my not-so-bad days that help me to relax, pass the time, and enjoy myself. When I am stuck on the couch it can't be a reading or hobby day because my vision is poor and the best I can do is to lie there staring endlessly at the television screen. Not working doesn't mean that I have nothing to do. The goal is to find ways to match my interests with my energy level.

Day 271 - Notice Anything Yet?

I started my medical leave a week ago today. I have already been asked if I see a difference in not working. It's only been a week, so I don't expect to see much of a change, but I was grateful not to have to go into the office today. It was a lost day spent drifting in and out of sleep until I finally had to get up and go over to my daughter's to help her out. I probably shouldn't have gone, but after spending a day alone I looked forward to some company. Plus, the end of the day is usually when I feel my best. Maybe it's from resting all day or maybe I just get a burst of energy because that's the way my body-clock works. I'm not sure, But between four in the afternoon and about nine at night, I am at my best. I'm not an early bird and I'm not a night owl. I'm some where in the middle and I have no idea what critter describes my best time of day.

 

The way it's shaping up, it looks like I have a good day followed by a bad one, in an every other day pattern. I think that what I am going to have to experiment with is whether any activity at all causes a crash. I don't have anything planned for tomorrow, but I do have to go into the city on Thursday for another doctor visit. The trips into the city are challenging, but it is worth it to have such excellent treatment. A friend asked if I could have the treatment here, near home, or if I have to be in the city to get what I need. I will ask the doctor about that when I see her. I don't guess she is the only physician to do intravenous supplements or the kind of injections she gives me, so I suppose it's a possibility. There is something about making the commitment to my treatment and following through that I am not going to mess with, so we'll see.

 

I'm not sure exactly how I expect to feel during this leave of absence. Certainly I hope to feel better, but I'm not sure how that is going to evolve. Will it happens gradually with part of each day being a bit better? Will it show up as a string of good days followed by fewer bad ones? Will I start to know that I am getting well because I wake up in the morning feeling like I've had a good night's sleep instead of like I haven't slept a wink? Am I going to know when I am as well as I'm going to be? Who knows. I just know that whenever I do anything I feel lousy. And if I don't do anything, I feel lousy anyway. It's ironic that I don't have to do anything to feel crummy and I can do plenty to feel better and still I don't. For now, it's about patience and perseverance. It's about hanging in there and staying optimistic even when it doesn't look like I'm making progress. For now my progress may feel slow, but I am going to pay attention to the signs that I am on the right track.

Day 270 - Alone, Together, Side by Side

When it comes right down to it, things work better when they are in balance. Whether it's a balanced diet, a balanced budget or the physical balance that comes from being sure footed, when there is balance there is a sense of stability and equilibrium, of harmony and of things being just right. Striking a balance between what I want to do and what I need to do is a challenge. I have been fighting to find my equilibrium in this fibro challenge for a long time. Some days it feels more in balance than on other days. It seems there are lots of things I have to balance, not the least of which is the time I spend alone, with the time I spend with others.

 

I have never spent this much time alone. For one thing, having a career means spending time at work and relating to co-corkers for a good part of my day. If I get lonesome, I can pop my head out of my office to get some face time. When I was at home when my kids were small, I was part of a very active group of young mothers and we got together all the time. Throughout my life I have made the choice to spend time alone. It wasn't imposed on me the way it has been dealing with my bad days with fibro. I have never minded being alone and when I used to travel for business, I cherished my nights alone in a hotel as I way to regroup and re-energize. Now that I am planning to be home recuperating, I am faced with the challenge of balancing my time, home alone, between resting and recharging with my social and emotional needs. I don't want to be endlessly stuck in the house by myself.

 

It's been a long while since I've gotten together with a couple of girlfriends just to sit and chat and be together. I met with two dear friends for lunch and we had a lovely time chatting away and just being there for each other. It was easy and relaxed and I am sure the time I spent with them was as healing and nurturing as an afternoon resting on the couch. Whenever I make plans, my friends and loved ones know that I may or may not be well enough to show up, so the plans for today were not certain. As usual, my morning was rough. I decided not to think about whether or not I would be able to meet my friends, I just took it slow and let my day unfold gently. I certainly wanted to go out for a while and enjoy myself - my friendships give my life balance, dimension and meaning - so this was important to me. Our time together wasn't about me or my fibro, it was just about three women sharing, listening and being there for each other.

Day 269 - What Could Be Better?

Today is Mother's Day. I am a mother and I have a mother (plus another dear friend that is like an extra Mom), so I know I am very blessed. Holidays call for celebration and we had our plans in place, but for a number of reasons things did not happen the way we had planned. Oh, well. The day was quiet and worked out just fine. Here I am at the end of the day, thinking about all the ways being a mother brings me joy. I loved raising my kids and I never imagined that as they grew older how much my joy would multiply. But here I am loving my girls with all my heart and realizing how much they have helped me to grow and learn about myself and life through them.

 

I like that Mother's Day is in the spring because spring represents new beginnings and there are few beginnings that are as momentous as becoming a mom. Regardless of the road that gets us there, once we hold a child in our heart we are never the same again. Our needs become a little less important when we consider the needs of our children, the world looks a little more dangerous because we want to protect our children from anything that could hurt them. Time seems to move more quickly and it is difficult to keep our children from growing up too fast and right before our eyes. Becoming a mother means our hearts expand and hold more love than we knew could exist between souls. Motherhood makes us stronger, more determined, more conscious and more contentiousness. We have little ones to protect and we are up to the challenge. As moms we want to be our best and do our best for the soul entrusted in our care.

 

As our kids grow they need us in different ways and we are called to grow and develop in new ways as well.  As mothers we experience struggles and sometimes are unsure of our path and our decisions but we offer the best we have to the raising of our precious children. As much as we are loved by our children, we are also sometimes the recipients of anger, frustrations and annoyance as our kids push back against us in their urge to be all grown up and independent. We develop a tough skin, but never a hard heart. We watch our kids in awe as they grow into their best selves. We celebrate with them when the best that they could hope for happens, and cry with them when their hearts are broken and their dreams dashed. There comes a time when we let go, knowing we have done our best and loved them beyond measure, And when they are grown, we stand by waiting, ready to help if they need us, but knowing that it is their turn to open their hearts and live the wonderful life of being a mom.

Day 268 - Celebration, Recognition and Thankfulness

I had a wonderful Saturday evening and I hardly felt like someone who has been struggling and sick. We went to an event to celebrate my hubby's life's work as a champion for special needs individuals. He was given special recognition because he has worked tirelessly to improve the quality of life for special needs kids in school and for adults in the community. I was so very proud of him and his accomplishments and of the kind-hearted, hard-working person he is. In addition to his recognition, a number of artists in the community were recognized for their contributions and for making the world a better place through their dedication to the arts. All in all, it was an uplifting event and it made me feel good about the things we value in our community.

 

Tending to the needs of those most vulnerable among us is important work and using art for expression and healing is of great value as well.There are times when I wonder where our values lie, as a culture. Are we doing the best for our kids, for those who are in need and those who need a helping hand? Are we sensitive to the needs of those around us and do we answer the call when our help is needed? It seems that people can be hard and cold and unresponsive, but then I have an evening like tonight when over 150 people gathered to celebrate service above self. It was heartening to hear stories and share the experiences of people who quietly, and behind the scenes spend their lives looking for ways to build a better world for all of us.  I am deeply appreciative.

 

My family remarked that I was high energy tonight and I agreed. I was excited, involved with, and energized by the people I was visiting with. They, with their very presence expressed their dedication to their work and to the purpose of uplifting others. There were young people with special needs who sang for us and there was barely a dry eye when they sang about challenge and making the climb through struggle and taking chances. They sang about being down and finding a way back up again, needing strength and pushing on because there is always going to be another mountain to climb. It's about the climb, the journey, the getting up when you've been knocked down and doing it all again. Those young people singing those words touched my heart deeply and I know that they are going to need all of the support the people in that room were ready to give. It was both humbling and inspiring. We've all got our mountains to climb, but tonight I put my own journey aside and celebrated the journey of others who are wonderful, dedicated and inspiring.

Day 267 - Treatments and Trade-Offs

This afternoon I had a massage - my first in months. I have tried using massage therapy to increase wellness, because of the many documented benefits. But for me, the benefits are mixed with some negative reactions. During my massage I experience extreme pain even with a very light touch. Some area of my body are much more sensitive than others and I never know which part is going to hurt. Today it was my lower back, the connective tissue along my calf, my neck and the back of my heels. I can't help but jump when the therapist hits one of those hot spots. The therapist explained that based on the amount of pressure he used, and the amount of pain I was experiencing, I would be considered hyper-sensitive. (Really? No Kidding!) I was happy that he was informed and responsive to my particular needs. When my massage was finished I had some lunch and headed home. Within an hour of my massage I went from having a functioning day to being hit with a wave of exhaustion that lasted for hours. I couldn't get up, wake up, or do anything but doze and hope to sleep off my utter exhaustion.

I've exoereinced the many benefits of therapeutic massage for well over twenty years. I have learned that when used to deal with illness it works best when it is scheduled regularly and consistently. Current research on massage therapy provides an impressive list of its benefits. First of all, it is drug-free, non-invasive, and assists the body in healing itself. Massage increases blood circulation, which delivers increased oxygen and nutrients to tissues and organs. It creates relaxation, reduces cramping in muscles, increases joint flexibility, and releases natural pain killing endorphins. And finally, among other benefits, massage assists in reducing back pain and migraine headaches. It is clear to me that my body can benefit from massage and I had planned on using massage as one of the tools for healing during my time away from my job. But, as with other medical approaches, individuals with fibro have a heightened sensitivity that must be taken into consideration.

Lots of things in life have a trade-off and when I make my decisions I am usually aware that one choice may upset the balance of another. A medical trade-off might be taking an anti-biotic for an infection knowing that the trade-off is experiencing uncomfortable digestive side effects. In everyday life, it might be accepting the expense of ordering take out for dinner as a trade-off for the amount of time and energy it takes to put together a less expensive home-cooked meal. I have to weigh the pluses and minuses of each of my wellness choices and as simple it may seem, adding massage needs consideration. I have to weigh the trade-offs. Do I go through with a weekly plan for the therapeutic effects of regularly scheduled massage and put up with the trade-off of additional pain and fatigue on the way to a higher goal of overall wellness? Or, do I pass up the opportunity for my body to heal using a natural, non-toxic, proven method because it has a down-side? It always strikes me as ironic when I pay good money for a treatment, that at least in the short term, makes me feel worse. That's what trade-offs are about, giving up one thing to gain something better. I've got a decision to make.

Day 266 - A Time to Focus on Being Rather than Doing

When I was a little girl I loved school. it made me a little nervous sometimes because I didn't always feel like I lived up to my teacher's expectations, but all in all, school was a good place for me. When I became a teacher, the classroom felt like home and I did my best to meet the needs of the students in my room. As my career bloomed and expanded, I found myself in front of a classroom full of adults and that felt comfortable, too. I feel like I have always been either a teacher or a learner. And it is more true in my every day life than it has been in a classroom. It's what life is about - big lessons and small ones in all shapes and sizes, some expected and others a complete surprise. There are lessons I learn easily and others that seem to come back and have to be considered again. Sometimes it's because I didn't learn the lesson well and other times I needed to learn my lesson deeper or in a new situation. I am open to learning new ways to manage my life, my feelings and my circumstance. I am far from perfect, but I can observe and appreciatete how far I've come.

Not a single one of us escapes life's tough lessons. The trick is to be open to the learning, growing, changing, evolving and expanding that those lessons bring. When I fight the tough lessons and stubbornly stick to my old ways, I only get to experience the lesson again. Same stuff, different day. As I look back I can see that there have been patterns of choices that didn't serve me well, and I finally got miserable enough to change. Then there are situations where I embraced growth because it feel so fantastic to find a new way to deal with my life. I guess I'm being a bit vague here, but I'm not looking to turn this into a soul revealing therapy session. What I am working on in my own head is the possibility that I can change some habits of mind and help this fibro thing to loosen its grip on me. I can think out of the box and maybe start to nourish my soul so my body can heal. I met with a fella today and we were talking about how my stress level has contributed to my health issues and particularly my adrenal fatigue and the fibro. He had some thoughts that were interesting to me.

Our bodies were not built to handle ongoing, unrelenting stress. It releases toxins that weaken our immune systems and causes a host of other health problems. Not a good combination. Stress has been a huge issue for me and I thought I was doing enough to balance out the negative effects. Guess I missed the mark by a bunch. Since I am on this medical leave, I want to make sure I do everything I can to restore my health and today I had a great conversation about some strategies I haven't tried. I was open to learning and exploring new possibilities. I need to design time for rest that is stress-free. No television, no computer, no phone. Just time to be quiet and contemplative. I don't do well with chaos and I need to create peace. I love nature and animals and mountains and the ocean. I love beautiful art and antiques and I love music that lifts my spirits. I love children's paintings and the nighttime sounds of summer, My time away from work needs to include the things in life that are beautiful and soothing. I know that silence is a healer and also think that beauty has something to teach me, and I am a willing learner. So during these coming weeks I will quietly surround myself with beauty and quiet and relish the being rather than the doing.

Day 265 - Caught in the Quiet

It was quiet today. Almost too quiet. It's interesting how much of my time is taken up by my work. Even when I am home, there is a never ending stream of communication that I really enjoy. The office was closed today for a staff retreat so it was even quieter than usual. I have asked to be taken out of the loop of daily activity but I know I am going to miss being involved. Even on my really bad days I sit with my laptop perched next to me and I spend time browsing or responding to the frequent emails that come my way, Today my mailbox stayed pretty empty and I felt the void. The phone was pretty quiet, too. I will miss the incidental conversations that come with a work day - getting caught up on family news, commenting on a movie or television show, sharing little details that become unimportant if they are not shared immediately. I will miss the joking around, the humor and the feeling of being part of a winning team. What feels best is that it's all waiting for me when I get back.

 

It felt good to wake up this morning and know I could have a slow start to my day. I need that. By late morning I was coming to life and I was looking for something to do. It was the first day of my medical leave and I had a long day ahead of me. I didn't feel like reading and it wasn't a couch day so I had no interest in daytime television, I didn't feel up to taking on anything that needed a ton of energy, so I headed up to my beading table to see if anything inspired me. I poked around among the colors and textures until I got caught up in stringing some ideas together. I played at my table for a couple of hours and it felt delicious. I have not touched my beads for months and I appreciated having the energy to create and to lose myself in a creative project for a while. It is impossible to be creative when I am sick and miserable. I am hoping to have more days like this while I am at home. I felt productive in a very easy and relaxed way, and I like to feel productive.

 

Having a job and going to work is something I have always done. I like to work. From the time I was in high school I have had one kind of a job or another. My Dad was very serious about going to work every day and he had a strong work ethic that he communicated to us kids. He had little patience with us being sick and was vocal about his displeasure if we stayed home from school. I have carried that work ethic with me and I also carry his voice in my head when I call in sick. Being home on medical leave is filled with lessons for me. My doctor knows that I can be almost apologetic when I describe that I am feeling sick. She encourages me to stop and just accept that I am having some problems. I need to learn to do that. I apologize to my hubby all the time when I am unable to do what we planned to do, or finish something I started. I need to learn to let myself off the hook. While I am on leave I have a different kind of work to do. I can feel productive when I have given my body a day of rest and nourishment or I can simply enjoy an afternoon of creative exploration with no guilt or need for an apology.

Day 264 - Taking Leave - I've Got No Choice

I came to a difficult decision over the past few days and today at work I announced that I would be taking a medical leave of absence. I have watched my performance over the past months deteriorate with tremendous difficulty concentrating, attending to details and following through on tasks that were my responsibility. I still was doing okay in my daily interactions. I found that I actually did well when I was in a situation where I was working with others because the energy of the group fed my energy and I could build some momentum. Once I left work, though, I was left with no physical or mental energy. I could tell my performance was suffering because as soon as I was left to my own devices. I couldn't seem to move forward and I totally forgot what I was supposed to be doing. I pushed as long as I could, but enough is enough.

 

Knowing that I have no work responsibilities ahead of me for some time, brings me a real sense of relief. Knowing that I don't have to get up, clean up and get out in the morning is a gift in itself. I don't have to slap on my happy face and tell people that I am fine and I also don't have to tell anyone that I'm not. Interestingly, being away from work means I don't have to focus on whether I feel well enough, strong enough, or clear enough to go function on a given day. I can simply focus on building my health. I am deeply appreciative that I have the kind of work situation that allows me to take the time I need. I am convinced that if I don't take time now, it won't be long before I won't be able to work at all anymore - and I certainly don't want that to happen. This is the third leave of absence I have taken since my diagnosis in the winter of 2002. I took six months in the late spring and summer of 2003 and I took six weeks two years ago. Each time I left I felt I had hit the wall and I just couldn't go on.

 

When I have taken a leave in the past, I made good use of my time away from work responsibilities. I was consistent with my health plan, and sought out additional treatment options. I have been struggling with getting this condition under control and I find myself in worse shape this time, than I was before either of those other work absences. I am battling an unrelenting fatigue that permeates my body every single day. Sleep doesn't help, my meds and supplements don't help, and restricting my activities doesn't help either. It is a sick tired that only responds to my being flat out on the couch or curled under the covers. Day after day I lie wide awake, miserable and frustrated. I have had enough. Sometimes a retreat is the best strategy so instead of plowing ahead, I am going to slow down and take it easy. I am going to relax, ease into exercise, and pay extra attention to my wellness plan, I am going to seek out things that inspire me and bring joy to my soul - staring at the ocean, sitting under a tree in the park, reading uplifting words and listening to beautiful music. I am going to feed my heart, my soul and my body and I am going to just let go.