Day 320 - All Fishing and No Catching

I went fishing today and didn't catch a thing but it doesn't matter one little bit. What I like about fishing is that it's lots of fun even if you never catch a fish. It's all about the process. I've caught a fish or two in my day and even won the award for the biggest catch on a fishing boat trip one time. I caught a fluke and it was the perfect fish because the fact that I won was a fluke of another kind. I have no fishing expertise, no particular skill and I couldn't tell you the first thing about how to be a successful fisherman (or woman). I just like being on or near the water and throwing in a line. I clip the barb on the hook and I make a deal with the fish that we'll just make a game of it, and I will put him back safely in the water. I don't need to eat him or mount him (like as if I would ever catch a fish worthy of mounting) to prove I had a good time.

Fishing is different than catching. I can fish all day and never catch a thing – but I still can say I still went fishing. I like that I can spend a day or an afternoon at something and have absolutely nothing to show for it except a bit of a sun burn and a bunch of happy memories. It would be nice if all of my days could be so relaxing and productively non-productive. I once saw a bumper sticker that read, A bad day fishing is better than a good day at work. I don't know about that – I like my work, but I sure do like my play! And time fishing is wonderful.

I am good at enough things that I don't feel discouraged or disappointed when I'm not good at another thing. It's a big “so what”. I have nothing to prove and I know that the way I decide to spend my energy with make a difference at some other time. Being outside and spending time doing something that doesn't take a whole lot of energy is a good thing and I don't know why I don't do this more often. I don't have any special gear or a vest or boots or an Orvis catalog to refer to for the most stylish way to show up at the water. All I have are a few lures and fish eggs and my very own fishing pole. It's all I need to put together a nice day. In the end if I catch a fish, that's cool, if not, there's always tomorrow.

Day 319 - Nature and Me - Perfect Together

I live in the suburbs and although you wouldn't think it of New Jersey, we have lots of wild life. We regularly see deer, possum, fox, skunk, raccoon, all kinds of birds and ducks as well as the occasional bear. I was very disappointed to find out that a bear was right across the street from where I live the other day, and I missed it. I love critters of all kinds. I will catch a mouse in a have-a-heart trap before I will kill it and I have been known to escort a squirrel or a family of raccoons out of my kitchen when they found their way in through an open door or a window screen they decided to slice open. I rescued a baby squirrel when I was a young teen and “Fuzzy” slept in a big parrot cage next to my bed and wandered my room and the rest of the house when I wasn't at school. I am all grown up and I still feel a sense of excitement when I see a porcupine in the wild or a pileated woodpecker eating insects from a dead tree.

I appreciate life and I find great joy in being in nature. Last weekend we took our two grandsons to a local pond and it was delightful to watch them make discoveries and display their sense of wonder at what they were seeing. Turtles were amazing, little fish a curiosity, a broken robin's egg a treasure. Two goose “fedders” were the find of the day and the sounds of ducks, geese and frogs a symphony. I felt so blessed to be in the presence of little ones making discoveries of things that delight me, too. It reminded me that little things do mean a lot and that I can have a wonderful time doing something as simple as walking around a pond just blocks from my home and things don't have to be big or elaborate to be wonderful.

My world has gotten just a little bit smaller over the past decade. I don't travel the way I used to or go into the city as often for a concert or for dinner. I rarely go out in the evening and I plan activities over the weekend carefully. But just because my life is different than it used to be, it doesn't mean it's not wonderful. I have found great pleasure in the things I can do and I am done worrying about what I can't. I think I have always been a person who could make a little out of a lot and I don't measure my success by what I have or what I wear. My treasures are the people I love and care for, and the experiences I have that make me feel fully alive. I never tire of being in places where there is an abundance of natural beauty. I love to take a walk in the summer woods or on a beach at dusk. Those kind of experiences are energizing rather than draining and I always come away refreshed and renewed..

Day 318 - Good Day, Bad Day, I'm Okay

For the past couple of years, every single time I've called my hubby, I have had to listen to the same little ditty as his ring tone. I'm pretty much done with listening to that same tune over and over again. My hubby has never been able to figure out how to change the ring because when he chose the one I'm tired of, he did it by accident. We have talked about that song numerous times, but day after day, week after week, and month after month, I listened. But, good news, last week he got a new phone and imagine my surprise when I called yesterday afternoon and he had finally figured out how to chang the ring! All I heard was a very normal brrrring, brrrring, brrrring, and it made my day. When he answered my call I told my hubby that I was the happiest woman on earth because I never have to hear that song again and that he had made my day by finally figuring out how to change it. We laughed.

 

Later in the conversation my hubby asked how I was feeling. Well, yesterday was a wash out. I felt awful and slept 'til nearly three o'clock and never did get to feeling any better, even after I got up. So, I told him it was a rough day. He replied that he thought I said I was happy. Well I was happy, but being happy and having a fibro day are not mutually exclusive. It was an interesting observation on his part; that because I am feeling sick I can't also be feeling happy. But in reality, I spend most of my time feeling happy or satisfied. I focus on what's good in my life and I spend as much time as I can with people and experiences that make me feel good. Why would I want to add even just one more little bit of unhappiness or misery to my life? I choose to be happy, even on a bad day.

 

When I say I'm happy I don't mean that I am thrilled to be feeling ill. I feel at peace with where I am, and I know that good days are a blessing and bad days will pass. I will not allow my mood to be determined by my physical condition each day. I have my emotional ups and downs for sure, but they are more about my everyday stresses and experiences than my days living with fibro. Over the past months I have come to terms with the inconsistency of my physical wellness and my energy level. I can still do lots of things that I love to do and I can still be me. Fibro hasn't taken everything and what I have left is more than enough to build a wonderful life. I'm not a pollyanna who thinks everything is always wonderful, fine and perfect and I am not a curmudgeon, who complains about every one of life's inconveniences. I fall somewhere in the middle - some days are good some aren't, but I'm still okay.

Day 317 - I'm Afraid I'm Too Tired to Be Your Friend

My relationships are very important to me and it can be a real challenge to balance what my relationships need to survive with what I need for my own well-being. On lots of days I just want to be left alone. Not because I don't care to be with the people I care about and love, it's just that I don't have the energy to be a full participant in a friendly exchange. If the phone rings and I'm not up to a conversation, I let it go to message. There are many wonderful people in my life who know how to strike the right balance and I appreciate their sensitivity and understanding. I once had a friend who couldn't understand why I didn't have the energy to spend more time with her as compared to my hubby. What I told her was that when I was with my hubby, we could just hang out and I could just lie on the couch with him and not even talk but I didn't have the energy to go out and do the girly stuff we used to do. She still didn't get it.

 

Our kids and spouses put up with so much more than the rest of the people in our lives. They see first hand the ups and downs we experience and after a while, we don't have to explain a thing. A single word sends the message and they know what to do to give me the space I need to make myself better. When I am up and around again, things just go right back to normal without any big explanations. The friends who are in my life seem to get what I can and can't do and they don't ask more of me than I can give. That goes a long way in keeping me from feeling guilty, weak or needy. If I'm not feeling well, I can go days and days without talking to anyone outside of my immediate family, then I wind up feeling lonesome and out of touch. I love it when a friend reaches out without any expectation. I feel terrible when a friend reminds me that I didn't return a call, or a missed an important milestone. I do the best I can with that sort of thing. On the other hand, I do get tired of "have you tried this" conversations that I know are intended to he helpful but just wind up making me feel uncomfortable for a whole bunch of reasons. .

 

I find it difficult to make plans, especially when I know that I can only do so much on a given day. I miss girl talk, browsing antique shops, meeting for lunch or an early dinner and being filled in on the details of a friend's life. What works for me in maintaining a friendship is to stay in touch whatever way we can. I love social media sites, email, texts, skype and instant messaging. Phone calls when I am feeling energetic are good. I like to meet for coffee instead of a long, multi-course dinner. When I do get together with a friend it's fun to talk about old times as well as get caught up with what's currently going on. I especially appreciate it when a friend lets things be real. I once had a friend who didn't want to tell me about her fun times because she was afraid I would feel bad for not being able to do what she could do. I love to hear about happy times and happy things. Life should be filled with happy stuff and even though I may be having a rough time of it. I've got happy stuff to share, too. 

Day 316 - Pushed Off the Grid

My internet service was out all evening. I felt frustrated, and there were lots of things I wanted to do, but I was stuck. It’s amazing how many ways I use my computer, and without it, I feel a little bit lost. It used to be that when I wanted to be in touch with a friend, I called. Now I feel like a phone call is an intrusion. I don’t write letters - I do emails and it used to be that if I needed information, I went to the library. I didn’t used to have medical information readily available to me, but now I bang out my questions on my keyboard and get exactly what I need, immediately, and without leaving the comfort of my home. When my doctor tells me something, I can follow up by doing a search and get more information. My experience without my computer made me think about all of the conveniences that make my fibro life easier. There are more devices I can count that add to my quality of life and help me to conserve my energy.

There isn’t a day that goes by when the wonders of modern technology aren’t there to support what I want and need to do. I don’t want to give away my age – but suffice it to say that when I was a kid, there was definitely more work in housework. Now when I have to do things around the house it seems there is always something to make the job faster or easier - and thank goodness for that. I don’t have to drag out a mop and bucket – there’s a neat little mop thing with replaceable pads that does the job just fine. I remember standing and ironing my husband’s shirts for the week as well as my own clothing and now I never have to iron. I can shop online and have my clothing purchases delivered to my door. The green cleaning products I purchase do all the scrubbing for me and there isn’t a stain that can’t be erased. I can make a cup of coffee in less time than it takes to brew a cup of tea. If I need to purchase an already prepared meal I can, or if I need food delivered, that can happen, too. I can “run” errands online and never have to leave the comfort of my home.

For those of us who have been suffering (with or without a diagnosis) for decades, as we look back we can see how much today’s advancements are a God-send. I am surely thankful for all of the ways my fibro life is easier than it used to be, both because of all of the everyday conveniences but mostly for the advanced technology that puts information at my fingertips. I am empowered because I have the ability to research and review medical information that was never available before now. I can connect with other people in the same situation I’m in. I can be a more educated consumer. The daily ups and downs of living with fibro are made much less difficult because I don’t have to do everything that needs to be done the hard way. I can find easier ways to get things done and save my energy for the more important things in life.

Day 315 - Sleeping Away Part of My Day

Today was a perfect early summer day. It was warm, not hot, sunny, but with just a few clouds and not too humid. I love to be outside on a day like this and relax in the shade. It makes me remember the finer things in life are usually the most simple and least complicated. What is nicer than watching little children playing in a backyard pool. or eating strawberries outside under a tree? What is more beautiful than following a path around a little pond and discovering turtles sunning on a rock. ducks paddling along the shore or finding a piece of a robin's egg that fell from the tree after the baby bird was hatched? Is there anything more lovely than spending the day exactly as you'd like to, and having it turn out perfectly?

 

I am thrilled with the way my day turned out. It didn't start out very well though. But a two and a half hour nap set me right. I knew my day was going nowhere fast when by mid-morning I was dragging and felt like I had no energy left for the rest of my day. But, just like yesterday, and the day before, my strategic napping got me back on track. There are days when I am tired, but not sleepy, and they are the worst. But if I am having a sleepy day - I give in to the urge to put myself back to bed and use the time to get some much-needed sleep to re-energize my day. I need that extra sleep just like an automobile needs to fill the tank when it starts to run low on fuel.

 

Babies are great at knowing what they need and they yell and holler until they get it - even sleep. As much as they hate to let go of what they've been doing, they know when it is time to say nite-nite and they get grumpy and out of sorts until they are tucked into bed. For lots of years I was a master at ignoring what I needed and just kept plowing ahead, regardless of the consequences. Now, I know better, so I do better. It makes no sense to fight sleep if it's what I need, or to skip any part of the routines I have developed to keep me heading toward a better sense of well-being. I can choose to use strategies that help to give me a better quality of life and I can enjoy the results of my better choices. Today I did a good job of attending to my needs. I didn't want to miss part of my day by sleeping it away. But, I did what I needed to do and as a result I had a much better day than I ever thought I would

Day 314 - I Don't Remember and I Can't Find It. Again.

I just have to give some lovin' to my fibro brain. What else can I do? Today was classic. I just couldn't keep things straight, and my memory wasn't so good. It started with leaving my umbrella at the foot of my mother's bed when I visited the nursing home. It was raining! How could I forget? When I went outside I ran to my car, wishing I had an umbrella. I worked at my beading table this afternoon and every time I put something down - I lost it - right in front of my eyes. I looked straight at what I needed - silver crimp beads, my pliers, the match to a bead I just had in my hand - all were lost in my fibro memory. Of all my silliness two instances stand out. The first was when I was working on stringing a pattern of beads. I paused for a moment to answer the phone. When I got back to my table I picked up the end of the beading wire and added another twenty beads or so, until I realized that I had picked up the end of a wire that was connected to another spool. I had to re-bead the correct wire.

The next instance was when I was finishing a necklace to give to my daughter tonight for her birthday. I planned everything out carefully and checked out the finished project in front of the mirror. It was just the way I wanted it. When I got back to my table I noticed I had six beads left over and I was pleased that I would have them to use for another project. I did the painstaking work of finishing off the ends and putting on the clasps. I was satisfied with my work. A few hours later I went upstairs to get the new necklace to wrap it in birthday paper. I wasn't until I laid it out that I realized the six left over beads weren't left over. I was six beads short on one end of the necklace. How did I miss that? My only defense is that the six beads would have been at the back of my neck and not in my view in the mirror. But I looked at the piece over and over again and never saw my glaring mistake. It has to be fibro brain.

How many times in a day can I lose my keys? My glasses? My cup of tea or coffee? How many times do I have to search for something I know I have, that I just saw, but it isn't anywhere, except exactly where I left it but I don't remember. How many silly mistakes can I make without feeling aggravated and frustrated. My daughter asked me to re-attach a tie on the back of her shirt. I sat with my needle and thread and mended it to perfection. It wasn't until she tried to put her blouse on that she realized that I had attached both ends of the same tie to her shirt. So instead of being able to tie the two ends into a bow, she had one tie loose in her hand and the other was sewn to the two sides of her blouse. The two ties were in a bow and when she undid it, the one piece just fell to the ground. Ridiculous.

I know this isn't Alzheimer's, but I do worry that my memory will fade with age and with that on top of my fibro brain, I won't be able to  find anything without it being attached to a tracking device. I am not a "natural" organizer, but I do okay. It doesn't  matter whether I am organized or not. My kitchen is well organized and I can usually find what I need, except for the times I swear I put something in its place, I look where it should be, I don't find it, but there it is right in front of my eyes when I go back again or I ask for help finding it. The visual message just doesn't compute. I'm a smart lady, but my memory for details, stinks. If I put something down, it may as well be lost, because I don't see it when I am staring it down. I write lists, but as soon as I am finished reading what I wrote, it goes right out of my head. I know this is something that I have to deal with and I am aware that not only is it frustrating for me, it's difficult for the folks in my life, and especially my family, who have to deal with this on a regular basis. All I can do is accept that I am doing the best I can and maybe just see the humor in it. Getting stressed out only makes it worse.

Day 313 - Not Much is Too Much

This afternoon my hubby called from work and asked if I would help him with dropping his car off to be serviced. No problem. It was the only thing I planned to do outside the house today so it didn't seem like a big deal. Plus, it's the least I can do since he did the grocery shopping on his way home from work. But here it is at the end of the day and I don't feel like going anywhere. I am done. Drained. Kaput. Seems that life has a way of sneaking up on me, even when I have other plans. I thought I'd be fine to do a short drive to pick my hubby up from the service station. This is just another example of saying yes to something and then I find I've run out of energy.

 

Since I have been home it's been pretty easy to determine my own schedule and avoid over-doing it. But sometimes I find myself over-doing it even though I thought I had things well laid out. Life sometimes decides to add a few more things to my day that I hadn't even considered doing. The week is really catching up with me, Between my lack of sleep, my continuing jet lag and some work and family matters that needed my attention, I am running on empty. I got to sleep by one this morning, so that was at least a little better than the night before. I am aiming for another hour sooner tonight. It is clear that I am still not up to a full schedule.

 

This week was busy, but it wasn't even close to my regular schedule. I never left the house today and I took a good nap this afternoon when it was clear that I was nodding off. I got into bed, pulled up the covers and slept soundly for about an hour. I must be feeling stressed because my neck and upper back are screaming at me. It doesn't take much to get me off track and I can immediately feel it in my body and in my fatigue level. It's the end of the day and I have to get myself together to drive across town. It seems like such a small thing, but I'm beat. As I'm writing this I see that my hubby has drifted off to sleep while he was watching television. I guess I'm not the only one who feels wiped out. I guess I should wake him up so we can get going. Thank goodness tomorrow is another slow day. I need it.

Day 312 - Melatonin, Time Zones, and 2 AM

I had some fun time last night. I watched some TV, read a few pages of a book I couldn't quite get into, returned a few emails I missed, worked on a bead project, played a few hands of online solitaire and paged through three or four magazines. I tried to get back to sleep every half hour or so, but I just wasn't sleepy. I have been like this for the past four nights and it is getting to be tiresome. But I am trying to make the best of a not so good situation so I am finding things to do to pass the wide awake time I am spending each night. It is nice and quiet and because I am so awake I feel like my head is clearer and my creative juices are flowing. As much as I am making the best of things, I don't want to turn into a night owl.

My body clock does not like traveling time zones. I've been home for four days now and I still have not gotten back to my regular sleep pattern. Last night it was well after two before my eyes finally closed. I've been sleeping through the night, but I still need my eight hours so it makes a pretty good dent in my morning. I take Melatonin, which is supposed to help stimulate sleep. So, in doing some research I discovered that melatonin levels in the blood begin to rise sharply at around 9 pm and you begin to feel less alert and sleep starts to seem like a very good idea. Melatonin levels in the blood are elevated all through the night. Early in the morning the levels drop again and there is barely a trace of melatonin in the body once the day gets on its way. Good to know.

So, here's my strategy, instead of taking my melatonin tonight before I head off to bed, I am going to take it at nine o'clock when my body should start producing it anyway. If my natural levels are low, my typical dose should give me the boost I need. I just don't want to spend another night prowling around the house praying for sleep to come. This whole week has been off. I've had to do some work appointments, my family had some things that needed my attention so my whole routine was off. Tomorrow is the first day this week I have absolutely nothing to do and I am going to do nothing. My wacky sleep schedule this week has got to get fixed. So, as usual, I have a plan, so lets just see how it works. 

Day 311 - Balance, Balance, Balance, Balance

Balance. Balance. Balance. Balance. How do I keep it all together and keep my needs in line with what other people in my life need? It doesn't matter how many times I am faced with a personal challenge, it's as if I have to figure out the balance thing all over  again. There are certain things that go into the formula - eat well, sleep well, rest, take my meds, manage the stress, talk things through, don't hold feelings inside and make sure I have enough physical energy to do whatever is on my list. I have to know when to say no and I have to be clear within myself to know what I want to say yes to and what has to go by the wayside so that my sense of balance stays intact.

 

I know what I need to stay on an even keel and I know what puts me over the edge. I know what my emotional boundaries are and I know when I am running out of physical energy and it is time to stop doing whatever I am doing. I also know when I am running on borrowed energy and I have to pay attention to my body when it speaks to me. I have spent a big part of my life living beyond my energy means. When I was in my thirties and forties I was traveling with work, raising kids (part of that time as a single parent) and literally burning the candles at both ends. I was into Yoga, positive thinking, stress management and I was physically active. Even so, I was stressed beyond what my body could manage and I started experiencing all kinds of stress-related symptoms. I tried to achieve balance, but it was elusive. I paid a high price for being out of balance.

 

I am in a place now where it feels like I am taking good care of myself and I don't want to put that at risk. But life isn't always as simple as saying I don't want to rock the boat just because I am in a good place. Stuff happens and there are times when we have to consider what others need and at the same time make sure we continue to take care of ourselves. Balance. I need to achieve it. I need to keep it and I need to make sure that I pay attention to what I need and what my loved ones need. What good is family if we can;t be there for each other. Love is a verb and I am an action person. I have some thinking to do and I am going to do well with this balancing act. I will do what I have to do and will be mindful as I am doing it.

Day 310 - A Day at Work and Lots of Questions

Even thought I am out on sick leave, there are still some job responsibilities I have to attend to. This afternoon I went to a business lunch and it felt good to in the swing of things. It also showed me that I am still having issues with running out of energy when I go to work. I was fortunate to be able to ride along with a co-worker so I got to nap a bit on the way home. When I am at home I have gotten to be really good about pacing myself and spending a good part of my day resting. Once I get to work, my adrenaline starts to pump because I love what I do and the people I work with, and I am excited about our projects. It is difficult to pace myself when I feel excited and engaged in what is going on. It makes me feel confused about decisions I have to make.

 

When I was away on vacation I spent time thinking about what I wanted to do about my work schedule once I got back to work in the fall. I still don't know exactly what I want to do, but I am starting to have some clarity on some issues. I am certain that I can't work full time. I was working part time, but that got to be too difficult as well. I love my work and can't imagine not doing something related to what I am currently doing, so that's where my thoughts are turning. I am not going to make any decisions at this point, but I am going to track my progress and see how I am feeling and then consider what I can do in my professional life not to lose any gains I achieve.

 

I am blessed to have a spectacular work team and part of my reluctance in re-defining my work is giving up the opportunity to work with such smart and fun people. My work life is part of my community - I have built some really special relationships and I don't want them to fade away. I have lost so many friendships because I couldn't show up, and I am afraid if I stop showing up for work, will I be forgotten. I know that's just a fear and that I shouldn't make career decisions based on fear. I have to keep balance in mind as I work on lots of different kinds of decisions in my life. Work is certainly part of who I am, but it doesn't define me. I know that I feel fully alive when I am challenged and working with great people. I just have to figure out how to do that and stay as healthy as I can at the same time.

Day 309 - Finding My Rhythm, Back in My Zone

One of the things that is difficult about travel is getting back into a rhythm once I am home again. Today was all twisted around and I think I am still operating on a three hour time change. My body doesn't quite know when to eat or sleep and it may take a day or two to get back to my routine. Routines are helpful because my day becomes filled with cues that it's time to take care of myself. I know that I have to take meds before and after breakfast, but when I sleep right through lunch, I'm not quite sure what to do. Dinner is at seven but it's only three o'clock, vacation time. I go to bed at eleven, but it's only eight and I'm not sleepy. In addition to adjusting to the time changes, my body has to deal with weather changes, too.

 

My body never really adjusted to the very hot weather in Arizona - it was extremely HOT! My skin was dry, I felt sluggish when I was outside and every day I battled migraines. I kept drinking, staying in the shade and taking my headache meds, but I had to really concentrate to stay on top of what I needed to do to take really good care of myself in a new environment. One of the things that is interesting about being in a hot climate without much humidity is that you don't feel yourself sweating because the sweat evaporates off your body so quickly. But the body continues to lose hydration at a rapid rate and it is easier to suffer heat exhaustion if that water is not replaced. I drank a lot of water, but the temperatures over 100 degrees were brutal. I took frequent rest periods and did nothing that was physically challenging.

 

Now that I am home in a climate that is familiar I feel more comfortable. My skin isn't so dry and I don't feel like I am living in a furnace. I spent the late afternoon and evening outside and I was relaxed and I could feel my energy beginning to return. I slept late today and my hubby went ahead without me and I joined him a couple of hours later at a family gathering. I am still not sure what time I'll fall asleep tonight - it's getting close to bedtime here, but it's still only seven o'clock back in Arizona. So, I will split the time difference and head off to bed at a reasonable hour and slowly bring myself back into this time zone. I am not the only one who has to make these adjustments, but I know that if I don't pay close attention, this transition will just take longer than it needs to.

Day 308 - Travel Trouble - Just Couldn't Get it Right

Today was a travel day home from Sedona, AZ, back to New Jersey. On my way out to Arizona, I had everything planned out carefully but still had a few glitches. Coming home was even worse. I guess I'm not so good at the stress-free travel stuff. Once again, I planned things to be as routine as possible, with as little effort on my part as I could imagine. The shuttle picked me up on time at my resort and I had finished all my packing the afternoon before, so the morning wasn't the least bit of a rush. As a matter of fact, I did very little yesterday in anticipation of a long travel day today. But, one thing after another just went wrong!

 

I am not a fan of all of the TSA procedures ( I know, I know, they are for my safety) but the photo scan plus the pat down was a bit much for me, especially since they left me standing waiting for my fate for way too long. I get teary with that stuff so I powered on through and asked why I was singled out for both screenings. They said I was wearing a belt - I wasn't, so I lifted my shirt to prove it. Then she said I had something in my pocket. I didn't and thus, the pat down. So much for that. So I was a bit flustered leaving security and decided to walk off my stress and make the walk to my gate my exercise for the day rather than taking the little airport cart. No problem, except I went all the way to the end of the wrong terminal. I had to wait for the cart to come back for me and get me to the right place, some distance away. I got to the correct gate and realized I didn't have anything to eat or drink so I walked up to get something. I took the cart back because I was getting tired.

 

Now that I was settled, I opened up my carry-on to get out something to read and realized that in my state of being flustered with the TSA procedures, I left my computer behind at security. Now I had to take another trip back and find my computer which had already been taken down to the next floor to lost and found, and no I couldn't take the cart I had to walk. Geez. The TSA guy was nice and told me he would walk me down and that I would have to go through security again. At that, I lost it! I was blubbering and frustrated and annoyed and a lot of other not so pleasant emotions. And to add insult to injury, the drink I just bought had to go into the trash. So down we went and back through security with this angel of a man right by my side. I got back to my gate with only ten minutes to spare after having two hours and fifteen minutes before my flight when I got to the airport. I was exhausted. BUT, I am home safe and sound and I have a great plan for tomorrow to be my recovery day.

Day 307 - A Balanced Week and a Fine Vacation

This is my last day of my Sedona vacation and it was all I hoped it would be, In addition to spending fun time with my sister, who lives far from me I was able to focus on what I needed each day to increase my sense of well-being. I was careful not to overdo it and yesterday was the only day that I did too much and I could tell today, because I was pretty wiped out. But, I knew I was going to be alone today, with no car and more body work scheduled so yesterday I indulged myself and pushed a bit, and had some fun while I was doing it! This is a place where I could stay very busy and there are countless places to visit and be awed. But I have learned the lesson of pacing myself so the week went as planned.

 

There are so many aspects to wellness that is seems like a small miracle when everything comes together to create perfect balance. I need alone time, people time, deep relationships and casual friendships I need beauty and calmness as much as I love busyness and excitement. I love to sleep and I am happy to be awake and alert. I need yummy food and I need discipline when it comes to choosing what is best for me and my body. I love new places and new things and I flourish in the cozy and familiar. I love to give and I am happy to receive. I love to travel and I am always happy to head back home again. I cherish my femininity and I love to be a tomboy. I am a good listener (well, I try) and I love to have all kinds of conversations. I am cooperative but I have a mind of my own. I love to be outside and play and I struggle to find the right amount of activity to keep my body strong and flexible and my fatigue under control. Striking a balance is a real challenge.

 

This week has felt balanced for me. I had time alone and I need that quiet to get back to myself. My sister and I did some exploring, but we kept our activity in short bursts followed by time to rest and restore. I drank plenty of water to keep myself hydrated and I used my sunscreen so I never got a sun burn. I explored things spiritual and some things historical or practical. I swam in the pool and ate my (healthy) lunch in the shade. I was careful and paid attention to my body and I have to say I never once felt limited or deprived, even though I was treating myself with kid gloves. I am convinced that if I do the right thing, whatever that is for me, in a given moment, I will stay on a right path of healing. There are no formulas, no maps and certainly no guarantees. But I just finished up a wonderful week, listening and heeding my body's messages and I think I did find balance. Not perfection - balance. And that seems like a pretty good thing.  

Day 306 - Taking the Long View

This afternoon I sat in the shade, on a bench, with a slight breeze blowing, on a peak that overlooked a valley. My vista was probably twenty miles. I thought to myself that it is sometimes a good thing to get the long view. From where I was sitting, the details of the valley below were lost. All I saw were specks of what people were experiencing, as their reality, down below me. A house that needed paint, a lost sock, a road in need of repair were all equally invisible from my point of view. I can compare that to the opposite experience of the mirror in my hotel room that magnifies every line on my face, every pore and every imperfection. I wondered if I might be happier taking the long view of things. Or, if there is a time and a place for each view.

My life can use the advantage of a long view every now and then. I can lose all of the details and chatter and focus simply upon the big brush stokes to asses where I am. I can use my guiding principles, my values or my spiritual beliefs as a context to examine where I am and where I'm going. The insignificant things in my life that can throw me off are no longer visible and thus their importance fades into the background, where it belongs. It's like when I'm at a traffic light and the light turns green, if I don't move in the instant the light changes, the person behind me blows their horn in frustration and annoyance. It is an insignificant moment and nothing to get honked at for, but without a long view, it can be tempting to get caught up in the minutia of life, and miss the real meaning.

There is much in my life to be thankful for and I am a person who likes to show my appreciation. I can have bouts of impatience when I am short sighted and think that what I want to happen, needs to happen now, and I forget that in the scheme of things I can take on a calmer and more expansive view of my situation. Sitting on the bench today I was thinking how tiny I am - a mere speck in the scheme of things. But I am an important speck to those who love me and I can be a speck that offers care and compassion to those around me. The big picture and the tiny details have to find a way to peacefully co-exist. I liked having a few moments to consider that possibility and to let its truth sink in.

Day 305 - Body Work, Works for Me

Body work is an important part of dealing with the aches,pains and stressors of a chronic condition. I had a new kind of massage today that was absolutely magnificent! I had never heard of it before, but while I'm on my rest and relaxation vacation, I thought I'd try something new. Over the years I have tried Swedish, Deep Tissue, Soft Tissue Release, Reiki, Cranio-Sacral, Myofacial Release, Polarity and Reflexology. All of them had value and at least for the time I was on the table, I felt better. Today I tried Ortho-Biomony, a system of bodywork that allows the body to correct itself. The massage therapist gently stimulates the body's reflexes in a way that supports a persons own healing mechanisms. The result is seemingly effortless pain and tension relief, a natural re-alignment and a deep sense of well being, Sounds like a lot of promises. Well, this massage delivered.

 

I have had it with massage therapists who don;t listen tome, who beat my body up like I'm a linebacker on a college football team. They think they know better than me and their refrain is no pain no gain. Well, I've had it with that, too. My local massage therapist is very effective and makes an effort to learn more about the conditions his clients bring to him. He is a good listener and an excellent practitioner. My therapist today started our session by having me walk down a long hallway while she observed me. She then assessed my alignment, the way I was holding stress, my stride, and my overall energy. When she started to work on me she made it clear that I was not to experience any pain at all, that there were may ways to approach a knotted muscle, tension, or mis-alignment. She worked for well over an hour and I got great results.

 

One of my biggest issues is that I hunch my shoulders. One therapist explained that it was a typical posture for people who are fatigued and in pain. It is almost like the body wants to fold in on itself for protection and that it just feels like it is too much work to hold up the shoulders and head so the neck moves forward and the shoulders slump. When I was finished with my session it felt like someone had pasted new shoulders and a stronger neck onto my body. I could not bring my shoulders forward, they refused to slump. The therapist's technique was to use movement, gentle pressure and holding my body in the correct position to send new messages to my brain about my alignment, At the end of the session, I stood up and looked in the mirror and was amazed at my new and excellent posture. I am going back one more time before I leave for home, I am excited to feel stronger and more balanced - and it didn't hurt  a bit.

Day 304 - Feed My Body, Feed My Soul

I understand the importance of the food that feeds my body, although I have never been a food driven person. I remember a quote that said you have to be a special kind of stupid to forget to eat. I'm that special kind of stupid. What I love even more than thinking about eating food, are experiences that feed my soul. Reading a great book or seeing a heart-felt movie, holding a baby, walking in the forest, sitting at the edge of the ocean or just about anything that involves nature feeds my soul. When I am full I feel optimistic, empowered, happy, light, and as if all is well in the world. Music feeds my soul, deep conversations feed me, and time when I am quiet and at peace with myself and the world feeds me too, I need a balance in my life that includes experiences that nurture my soul.

That's why I love to come here to Sedona. It is a beautiful valley surrounded by red rocks that both inspire and amaze me. When I am among towering formations that are millions of years old, it really puts things in perspective. Today, my sister and I took a tour that I have been on a couple of other times, into the Red Rocks. Each time I visit here, the vistas and the expansive beauty take my breath away. I am humbled in the presence of God's creation and at the same time I feel the soul of me expand into its fullness. I like the way I feel when I am here and I like the way I feel about myself when my soul is filled with the beauty of nature.

That's not to say that just because I am someplace I love that is filled with beauty that I can ignore what I need to do for my physical self. I had a decent night's sleep although I woke up too early (still on eastern time I guess), but I took my time getting ready for my day. I brought extra water on our jeep tour as well as migraine meds because I know that heat is a trigger for me. An hour into the trip I felt a headache coming on and was able to nip it in the bud because I was prepared. A single pill did the trick.  I didn't do any walking or climbing at our various stops, I stayed in the shade and just soaked in the beauty. When we got back to the room, I took a nap before we went for lunch. After lunch I took another nap and then headed for the pool, which was a nice temperature and felt refreshing. I feel like I had a day in balance and I feel good from the inside out. 

Day 303 - Here's the Message - Let it Be

I walked a labyrinth today. There are many ways to walk a labyrinth, but today I chose to do a problem resolution . As a person enters the path, the first direction is to the left. The left side of the maze represents logic and problem solving.  So in problem resolution I was to hold a question in my mind and heart that I wished to resolve. As soon as I began my journey into the maze, I began to think about my health issues and how they relate to my work. I wondered what I should do to stay true to myself and responsible to my career. I have been struggling with next steps and since the work/health challenge was the first to pop into my head, I began my path through the maze with that particular issue in mind. As I walked the path I held my situation and the questions I had around it in my mind and heart. With each step I focused on bringing peace and clarity to my issues.

After focusing on my problem, the path led me effortlessly to the right side of the labyrinth which represents openness and creativity where I would simply let my higher self communicate a possible resolution. I trust this kind of process because I have found that when I can quiet the chattering voices in my head and let the quiet voice of intuition, my higher self, or God speak to me, I have more clarity and certainly more peace surrounding even the most difficult issues. After just a few steps, the Beatles song, Let it Be started playing in my head. Let it be, Let it be, Let it be, Let it be. There will be an answer, let it be. It made such perfect sense. Here I am struggling with an issue that it isn't even time to resolve. I am only a month into my medical leave of absence. I have no idea how I will be two months from now or if my circumstance will change in any meaningful way. So for now, I just need to let it be. Perfect.

There is a strategy that I have used over the years called "Holding the Question". I'm not sure where I picked it up - I didn't invent it. Holding the question means that the question itself has value and importance. Our culture seems to rush to an answer or a quick fix. This strategy focuses more on the question itself than the value of having an immediate answer or response. Holding the question can look different in different circumstances. At work, I call it just putting one foot in front of the next, doing what makes sense to do, until it makes sense to stop. That keeps me from rushing to a premature decision and it also lets me grow into a yes, if yes it what it turns out to be. If the answer is about not moving forward, that will become clear over time. Another way to hold the question is to decide not to decide. It may be that a clear decision needs to be made and I am just not ready to make it. It is okay to keep the question or issue in mind and not act, yet. Like maybe buying a car. Just because I have decided to buy a car I can hold that thought while I let in all kinds of car buying information until I am ready to act. My walk today gave me the answer to hold the question. I will not decide about my future, I will simply, for now, let it be.

Day 302 - Vacation - Day One. Sleep, Sleep, Sleep

If I ever have any doubt about the impact my schedule has on the way I feel, travel makes it very clear to me. I slept twelve hours last night after flying to my vacation destination. I got through my day through adrenaline and naps on the plane and on the shuttle that took me to my final destination, There were a few glitches in my travel plans but I tried to take them in stride so that added stress wouldn't burn up precious energy. My room wasn't ready so instead of getting settled in I had to go out to eat. Good meal, but I would have preferred room service, eating with my feet tucked under me, sitting on the couch.

I finally got settled in and decided it was time to open up the box of meds I sent to myself so they would be ready for me at my destination, I sliced open the packing tape, opened the box and found somewhere near 250 pills tumbling around in the package! The packing pillows had deflated (probably popped from the heat) and so the med boxes all opened, spilling their contents. It took me almost an hour to get all of them back in their proper places. I was tired, I wanted to go to sleep, but before I could I had to get this straightened out so I could take my final round of meds before bed. Not fun.

I finally got to sleep at ten (1:00 am in my own time zone) and slept long and hard. I woke up a couple of times, once with a screaming headache to take migraine meds, and a couple of times when the phone rang in the morning. Even though I slept a total of twelve hours, I felt like I could sleep some more, but I had to eat. I got up, ate my breakfast and then went back to bed until it was time for my massage. The massage gave me some energy and I am still riding that wave three hours later. I plan to make tonight an early night again and I hope my body will cooperate by going to sleep so that I can have a more normal day tomorrow. My body doesn't like travel or change. I didn't plan on doing anything today, except to rest so that maybe tomorrow I can have a little bit of vacation fun.

Day 301 - Tales of a Weary (But Happy) Traveler

Traveling with fibro and fatigue can be a challenge and I thought I had everything in place to make my trip effortless and relaxing. HA. I don't travel very often anymore and I chose my destinations very carefully. I want to enjoy my time away and I choose places that nurture me while I am away from home. I flew to Sedona, Arizona today and it was interesting the way the day played out. My flight was just a little bit late - but just late enough to make me miss the shuttle to take me from the Phoenix Airport to Sedona, a two hour drive. I figured letting someone else drive would be less stressful and I could conserve some energy. But rushing to catch my shuttle and missing it by just a few minutes was annoying. I stayed calm and relaxed, I didn't have a deadline to get to the resort where I am staying so I waited another hour to catch the next shuttle. Once I got to Sedona I planned to rent a car. The local agent gave me the equivalent to New Jersey's rent-a -wreck. I haven't seen such old and ugly vehicle in a long time. But, it was wheels and that's what counts.

 

I stopped at a local motel where I was directed to pick up the car. What I didn't realize was that the people at the motel had no idea the car was there. waiting for me. It was all very strange. I didn't want to just hop into a car and start searching for keys under the rug so we called the rental agent and got instructions as to what I was supposed to do. I found the car that was left for me and lugged my suitcases across the parking lot and shoved them into the back seat. It was hot outside and sunny - and I do mean hot. So by now I was sweaty and getting very tired, I got into the driver's seat and searched inside the car until I finally found the key, which was very well hidden. I put the key in the ignition and turned it. Nothing happened. Not a sound. The car was dead. This was not good. So I went back into the motel to cool off and call the rental car agent again. He explained that the only other car he had was sitting at the repair shop but he was pretty sure it was ready. He said he would come by to pick me up. He did - in a powder blue Audi convertible, top down. Sweet. I asked if that was my car. He simply said NO. (One can only hope?)

 

I hopped in and he drove me to my second rent-a-wreck. I thanked the man and got into my rented vehicle. I had to drive back to the first wreck to get my luggage. I switched it over and I was on my way. I got to my hotel ready to finally settle in and relax. My room wasn't ready and wouldn't be for at least another hour. Seriously? It was already eight o'clock New Jersey time and all I wanted to do was get into my room, kick off my shoes and relax. Plus, I hadn't eaten since I had my fruit and cheese snack on the plane. For my trouble I got a substantial gift certificate to the resort restaurant and a nice welcome package with "spa" products. That was very nice, but it didn't take away from my feeling of tiredness.

 

I maintained my composure through all the little annoyances and I have to say that the people at the resort were very sweet and helpful. I thought I had planned out this trip so that I would conserve energy and be able to enjoy my stay. I started packing early in the week, shipped my meds ahead so they would be here for me and I wouldn't have to worry about them being lost or confiscated, I packed lightly so I wouldn't have to deal with more than I need and I picked a place to be that is spiritually nurturing as well as beautiful and interesting and I didn't do the two plus hour drive from the airport. I can't control the things that happened on my way here, but I can control the amount of stress it causes. I chose to stay calm and make the best of each glitch. I am now in my room, sliding door open with the curtains lightly blowing in the breeze. I can breathe deeply and drink in the sweet night air, put the troubles of my day behind me and just relax.

Day 300 - A Beginning, A Middle, But No End

This is Day 300 for me. Wow. It is beginning to sink in that this journey is going to last well beyond 365 days. I began this blog when I started a one year treatment program for fibro and fatigue. The program did not promise recovery in one year, it was designed to give the treatment a chance, thus the twelve month commitment. Many people with chronic conditions have a hard time finding a physician they can trust. Even in a trusting partnership working toward restoration of health together, it becomes clear that this condition has a beginning, a middle, but at this point in time, no end. That is a sobering thought, but one I have come to accept. I will not succumb to this condition but I do know that its presence must be integrated into my life.

 

I am more at peace after coming to terms with the reality that fibro and fatigue will have a voice in the way I live my life. It gets a vote, but it doesn't get to determine who I am, what I believe, how I relate to other people or what causes I commit myself to. My life has slowly changed and I have been an observer in the process as well as a participant. When I look in the mirror I see the same old me. When I wake up in the morning I feel like a different person. My inner enthusiasm doesn't match my physical energy. My goals have changed and I have learned to be happy with doing less,

 

I have been on this fibro journey since I was a teen. I didn't have a name for it until ten years ago. I remember wondering, as a young mother, how I would take care of my little ones when I had such severe migraines and bouts of IBS. I had aches and pains, illnesses and allergies. Doctors thought I had an auto-immune disorder, but nothing was ever done about it. It seemed there was always something going on. I had such severe TMJ that a dental surgeon wanted to replace the joint in my jaw. I refused the surgery and that particular problem faded away just like most of the other serious aches and pains that came and went. The medical stuff was mostly annoying all those years until I was suddenly laid low a decade ago. I have been enormously surprised at the power fibro and chronic fatigue have over my body. But, it has no power of the essence of who I am or who I am becoming. I like that I have documented this journey for the past year, the writing gives me a positive focus and I can see where I've been and maybe put some ideas out there about where I want to be.

Day 299 - Knots and Spasms and Pain, Oh My!

This past weekend I was in the car a bit going to pick up my daughter and getting her back again. Over two days it was six and a half hours. Ever since then my legs have been aching and miserable. Even though I have lumbar friendly seat in my car, my back and neck are screaming at me, too. I always tell family that I have more of a problem with fatigue and fog than I do with the pain of fibro as I work to manage my condition. But I keep forgetting that I have neck and leg problem quite frequently, I just don't find it to be as difficult to manage as the inability to function because I am wiped out. I am managing my body pain using supplements that include glucosamine and chondroitin and regularly scheduled massage. I have tried the "fibro drugs" that are widely advertised but I cannot tolerate the side effects and the toxicity concerns me.

 

When I went for my massage this morning I didn't expect for it to be relaxing, it never really is. I have learned to take the good with the bad when I go for my body work every ten days or so. I do like the quiet and the awareness that I am being tended to and moving toward healing, but that's where the good feelings stop. My therapist thinks I need regular massage so that I don't lose the benefits I gain from my hour long treatment. I can't go once a week because it takes more time than that for my muscles to recover from being manipulated. I am filled with knots and tight and spasmed muscles in my back neck, and legs. I am always surprised at how much pain comes with the "healing" touch of my therapist. He tells me that he uses the lightest pressure possible to "engage' the muscles and that I am hyper-sensitive to touch. Oh, I could have told him that! What's really interesting to me is that I don't know how much I hurt until he starts to work on my body. Once he gets started I find out pretty quickly.

 

I am going to be traveling this weekend and my poor legs and neck haven't even recovered from my last trip. I do what I'm supposed to do when I travel - I frequently stand up and stretch and once I get to where I'm going I make sure to walk around a bit. I use heat and cold packs alternately to sooth and relax my muscles and help to release the spasms. I've even found some good yoga poses that help with increasing my circulation that also stretch my muscles. Managing pain is an inexact science and because I have such a terrible reaction to many medications I have to find ways that are less toxic to my body to relieve my discomfort. Once again I must acknowledge that I am blessed to be able to afford frequent body work. Even so, the cost can be prohibitive so I joined one of the nation chain spas to keep the cost down as best I can. Today I may be hurting but I am working on feeling better.

Day 298 - It's a Long Haul - Better Pace Myself

When my hubby gets tied up with work meetings at night, goes away on a trip, or even worse, gets sick himself I get really concerned. I have always been very independent and because of being divorced and a single mom I got to be pretty good at taking care of myself as well as my kids. The idea that I need someone here to take care of me is very foreign and I have to admit I don't like it one bit. It is still very hard for me to ask for help. I am feeling more and more dependent and I don;t want to increase my hubby's stress level. My emotional needs are met, but it's the everyday routine things that start to fall apart when then two of us aren't each doing our part. I wonder how things will work out as we age and then I remind myself that that kind of thinking is just borrowing trouble and I bring myself back to the present, which is hard enough.

 

As long as everything goes as planned we have pretty much figured things out as to how to keep up the house and take care of our lives within the context of my having a chronic condition. But one of the hardest things about living with a chronic condition is that it is always present. even on a good day and I can't do what I used to be able to do. The people in my life have to pick up the slack and that creates its own set of challenges. I'm one of those women fortunate enough to have a spouse that isn't afraid to be in the kitchen or do things around the house, grocery shop or take care of feeding the cat and walking the dog. (He has made it clear that folding sheets is at the very bottom of his list of things he likes to do, but he will do it anyway). Before I got so sick we had a nice rhythm going and things got done without too much fuss, and I felt like a fully contributing partner. Now, it is clearly not the same.

 

Over the past couple of years I have been doing less and less - both for fun and with my responsibilities. At dinner time I am pretty much out of energy, especially on days I've been to the office or into the city to see my doctor. My hubby went from being a "great heater-upper" to a pretty good cook. He used to stop at the grocery on his way home to pick up a few things and now the responsibility for shopping falls on him. When I have had a string of bad days, the things that I typically take on have to be shifted over to him and that makes his load even heavier. I start to feel the stress and I imagine that he does, too. So when I'm having a bad time and he isn't here, there are things I just can't get done and I start to worry about how on earth I will manage. What's essential for me to remember is that what needs to be accomplished is far less important than keeping our stress levels down. We're in this for the long haul so we'd better pace ourselves. There is plenty to do - but plenty of time to do it, and nobody is keeping a time clock on us.

Day 297 - June is Rebuild Your Life Month - Imagine That

June is Rebuild Your Life Month. It is also Adopt A Shelter Cat Month, Fireworks Safety Month, National Accordion Awareness Month, National Bathroom Reading Month, National Candy Month, Potty Training Awareness Month and Turkey Lover's Month, among others. I like that there are times designated to kind of focus on things that may otherwise go unnoticed. I love turkey - who knew there was a time to celebrate that? I'm not a huge fan of bathroom reading, but I guess for some folks it's a good thing. I think that accordions have lost favor and June may be a good time to put that under-appreciated musical instrument back on the map. I think every month should be fireworks safety month because too many people play with fire crackers and get themselves hurt. I'm not at a point in my life where I need to pay attention to potty training anyone, but some increased awareness could come in handy if I took advantage of adopt a shelter cat month. June turns out to be a pretty busy month and there are at least another twenty things to pay attention to in June.

 

It caught my attention when I saw online that June was a month designated for re-building your life. I like that idea and June seems to be a good time for it. I always feel a bit more energized in the late spring and ready to take on projects that may have been sitting idle during the long cold days of winter. I feel more motivated and I see things with fresh eyes when the sun is shining and the weather is kinder and more comfortably predictable. This is also a good time to re-visit and re-commit to things that have worked in the past that I may have forgotten about, or to integrate a few fun summer things that will bring new energy to my life. But I think of my life as needing more of an update than a re-building. Kind of like freshening up a room rather than re-decorating it. I am happy at I am at peace in the life I am living and I am finding ways every single day to keep my life rich and certainly worth living.

 

There are lots of things in my life, both big and small, that can be edited to help me to continue to create my best life. I can make sure my surroundings are peaceful and beautiful so that when I have to spend lots of time alone and at home I can feel calm and relaxed rather than agitated and staring at what needs to be done. I can manage my stress level by not spending time worrying and focusing on the glass half-empty. I can choose action, or at the very least I can create a plan to help me get over life's hurdles. I can deal with conflict in my life in a calm and even-handed manner, expressing my needs and letting go of the outcome. As I think about re-building my life I can add habits that increase my wellness and strengthen my body. Even a single change can have a positive impact on my well-being. As long as I keep a positive attitude I can see possibilities where there are challenges and hope where others may see no resolution. Even though June is the month designated for rebuilding your life - I can continue to focus on effective life strategies every month of the year.

Day 296 - Gonna Bloom Where I'm Planted

When I was a little girl I desperately wanted to take ballet lessons, but for one reason or another my parents had other ideas. I wanted to be a ballerina and I think I probably would have danced if I was led in that direction. But I didn't take lessons and I never became a ballerina. But I did lots of other things instead. I developed other kinds of creative expression that still serve me today, and I still dance whenever I get the chance - in the kitchen, with my kids and whenever I go to a wedding! My dancing may not include ballet slippers or a frilly tutu, but I am happy and fulfilled. When I look back I realize that if I had done the whole ballet fantasy thing as my career I would not be where I am today in many different ways.

 

Sometimes I get to choose the direction of my life and other times the path is forged for me. When I went to college I decided what I wanted to study and that choice created my lifestyle as well as my work. When we decided where we wanted to live, the same thing happened. Well, my life with fibro is creating its own rhythms and patterns in my life. Things are different, for sure, but I am focusing on everything that I still have in my life. I've lost some things, but I certainly haven't lost everything. Life is slower and that's not such a bad thing. When I was just a kid there was a big poster that said to bloom where you are planted and that's exactly what I am doing.

 

Every time I make a decision I acknowledge that it will have implications that I might not be able to predict and I am okay with that. Actually, it's what gives life a little spice. If everything was predictable I would have fewer opportunities to learn to adapt and live my life creatively. Truth is, I have a condition that is unpredictable and that means I have to be able to tolerate uncertainty and look for possible unexpected benefits in my changing situation. Even when things may take a turn for the worse, I can choose to see my setbacks as temporary and prepare myself for better days ahead. When I have a bad day I can let go of discouragement and disappointment and acknowledge that life is complex. It's all up to me. I can continue to become emotionally stronger, even when my body lets me down.

Day 295 - Am I a Wallower or Do I Express a Zest for Life?

There was a war of words on a fibro site that I frequent that had to do with the difference between being whiny and wallowing in self pity and the supposed opposite, being positive and having a "zest " for life. There was a lot of anger in the comments responding to the idea that people who share how horrible they are feeling, or how terrible they are doing, are "wallowers" and the ones who are positive have a zest for living and don't let things get them down. I fall somewhere in the middle on the issue. I think positive people can sometimes wallow and wallowers can sometimes take a rough situation and make the most of it and become more empowered along the way. Slinging arrows of criticism for the weakness of the wallowers and high praise for people who are positive only serves to divide us, when what we need to do is be there for each other. It is not my place to judge another person's coping skills, but I can be self-protective around individuals feeling less positive so I am not dragged down with them. I can maintain my equilibrium and still be supportive and respectful of another person's difficulty coping.

What makes a person positive? The way I see it - a positive person accepts what is happening in their life - good or bad - and makes the most of it. A positive person can have bad days, bad experiences, and on occasion, makes bad decisions. The difference between a positive person and a wallower is that a person who is wallowing in self-pity or negativity is stuck. Their pain, discouragement and feelings of powerlessness make them feel as if there is no way to move forward and consequently they begin to focus on what is wrong, rather than on the possibilities for how they might make things right. It is absolutely ridiculous to ask people not to express their pain and frustration when they are in a complex and difficult situation. Talking things through is a time honored way of healing emotional pain. It is silly to suggest that we pretend that a bad situation is a good one - that's simply being a Pollyanna - someone who is expressing unrealistic optimism. The key to managing challenging situations is to keep a healthy balance between feelings and action so that negative emotions don't become the overriding theme of life. As in, some people are only happy when they're not.

So how do we support the people around us who are stuck and what do we need when we feel ourselves drifting away from being positive and into that feeling of discouragement and being stuck. We can be good listeners and we can be careful not to overload others with our pain. Friends and loved ones want to be helpful and supportive, but we have to be cautious about how much we dump on those in our support network in an effort to relieve our suffering. When I can empathize with someone who is suffering, there is healing that begins to happen for both the giver and the receiver of that kind of caring support. When we are stuck, we need to find ways to re-frame our experience so that we focus on managing just a bit at a time instead of focusing on the enormity of our situation. There is a delicate balance to be struck in communicating our fears and pains as well as being on the receiving end of that kind of expression. We are up and we are down and all of us need a safe place to land. There are times I have been that safe place for someone who was struggling. On the other hand, I am very grateful to have been the one receiving the gift of caring, empathy and compassion.

Day 295 - I Think My Body is a Lemon

There's just a sliver of a moon tonight. On most nights it wouldn't make much difference, but it meant that tonight, it was really dark outside - not even a little bit of light from the sky. We discovered how dark it was as the sun was going down and we were driving through the mountains, on the way back from bringing my daughter back to her group home. Both headlights were out. Both. At the same time. Not an ideal situation, by any means, but we had no choice but to keep driving and get ourselves home in one piece. The back roads were like driving through ink - total darkness with not a glimmer of light all around us. We made it home by strategically using our high beams, but I have to say that I never expected to lose those lights and it made me think about how much I rely on my car being it tip top shape every time I get in it and turn the key.

 

There are probably a zillion things that I take for granted each day. I flip a switch and a room is flooded with light. I turn a handle and clean fresh water flows. I open the fridge and I have healthy nourishing food cooling inside. I type on a computer and my words reach out to people in all corners of the world - without a stamp and without me even knowing who they are. I hop in my car and I expect it to take me where I want to go and aside from a little maintenance here and there and a weekly stop at the gas station, I am literally good to go. I don't think about it, and when something goes go wrong it is a bit of a shock. The lights are an easy fix and I will be on my way again, safe and sound, no big deal. I used to take my health for granted, but I don't take it at all for granted anymore and I don't know what to expect from day to day.

 

I wish my body was as easy to fix as my car. A tune up here, an engine flush there, a few parts refurbished and if need be, replaced, and off I go. Not so with this body of mine. I keep tweaking and changing my wellness plan, and I drag my body in to see the doc whenever she tells me to come in, yet I am kind of feeling like my body is a "lemon". You know - like those cars you buy and they have to go into the shop very other week and the car is out of commission more than you can drive it? The kind of car they wrote a law about in New Jersey - it's called the Lemon Law and if you bought a car that's more trouble than it's worth the dealer has to take it back. Well, I can't trade in this body for a model in better shape so I am just going to make the best of it. My car made it home just fine without headlights - not ideal, but we had to make adjustments. My situation is the same - not ideal - but I'll make it just fine with a few adjustments of my own.

Day 294 - Why the Heck is Rest and Relaxation so Hard to Do?

It's Friday and as I look back, this has been a better week than most. I think I have felt better these past couple of days than I have in quite some time. I saw my Lady Doc yesterday and we went over my progress (or lack of progress as it turned out) and she decided to stick with what we're doing - I will continue all of my meds and supplements with the exception of my antibiotic. I was on the antibiotic for six weeks to address a hidden bacterial infection that showed up in my blood work back in the winter. A six week round of a different antibiotic didn't do the trick but I am hoping that this round has taken care of it once and for all. I will have blood drawn again in a couple of weeks. She does think that my meds for adrenal fatigue and hypothyroidism are starting to kick in. Halleluah!

Although for the past few days I am not feeling as sick and sleepy as I had been over the past months, my doctor warned me to not overdo it. She asked me about a typical morning since I have been out on medical leave. I told her that I get up around eight-thirty and take my early morning meds, make breakfast and then watch some morning news. Then I get onto my computer for a while. If the dog needed a little walk I might go out with him. Then I might play around for a bit at my beading table. She said - that sounds like a lot. Huh??? That's a lot?!? What the heck am I supposed to be doing? My mornings sound like nothing to me. But I guess nothing is what the doctor has ordered. It's hard to rest when I am feeling a bit better and I know that today (just one day after my doctor's admonition) I did too much. I picked up my daughter and made a quick run to the grocery store and then made dinner. Oops...but it felt sooooo good to be active and productive - even if that doesn't sound like a lot to most people. Maybe I'll beat the odds and I won't pay for it, big time.

This is a great time of year to be on a medical leave and I guess if I am to stay as quiet as my doctor would like me to be, I need to think of being at rest when I am not feeling horribly sick, a bit differently. For instance, when I go to the beach I sit in a chair and contemplate the rise and fall of the tide. I might read a book, or take a little nap. I might engage in light conversation or watch little ones playing. If I am really feeling ambitious, I might go and dip my toes in the water. Hardly a strenuous day - but it's not supposed to be - it's vacation! That's the way I can think about being at home. I am on a wellness vacation. Just like when I go to the shore, when I am at home on medical leave I should expect little of myself beyond resting and reveling in pure relaxation. I know how fortunate I am to be able to take this time. I am going to make the most of it by doing the least I can do.

Day 293 - Note to Self - Be Brave

All these pages I have written over that past months about fibro recovery have kind of been me, talking to myself. I have been trying to make sense of my situation and focus on ways that I can grow through this and come out on the other side a stronger, more self-aware, reflective, pro-active and optimistic being. I certainly don't have all the answers - I hardly have any - but I am still filled with questions. I have enormous curiosity about the strength of the human spirit and I wonder how we can be so resilient when the challenges we face are so enormous. We lose a job, a parent, a spouse, a child, or our health and yet we keep on going. We are frustrated, annoyed, discouraged, angry or bewildered and yet we continue to seek our personal truth. We get beaten down, yelled at, criticized and ignored, but we still seek out relationships that have depth and meaning. We are amazing human beings.

 

I see it all the time - people rising in the face of adversity and personal disaster. I see strength, courage, determination and great resolve when it comes to facing and conquering those circumstances which, were it not for our bravery, would leave us beaten and in despair. I see it in children who believe in adults and in the possibility of a hopeful future, even when they have been sorely disappointed. I see it in the elderly who continue to hold onto their dignity and their personhood, even as their bodies are ravaged with illness and age. I see it in the people in my family and among my friends as they strive to bring their best selves to the people and the situations around them. There are people who sign up for bravery - like soldiers and firemen, policemen and doctors. They take big risks and hold our safety in their competent hands. But most of the brave people I know didn't sign up for that. They grew into it because of their circumstance.

 

As I got older and began to mature, I could tap into my courage more easily. I put some history behind me that showed that I have taken on big stuff in my past and I made it through and came out stronger for it on the other side. I know my strengths and I have learned to navigate around my weaknesses. I have gotten better at not beating myself up for what I'm not and I can focus more clearly on who I am. I have learned to be strong - not just through my own experience - but also by watching the people I love and care about make it through their tough times with courage and grace. I have had hard teachers who left me bruised and discouraged, and those may have been my most important lessons. As I reflect on what I am learning about life and about myself on this fibro journey, I am finding the same me that has been here all along. I'm taking life one step at a time, leaning when I need to and standing on my own two feet whenever I can. I keep writing because there is so much more to learn. Fibro is a tough teacher - but sometimes the tough ones are the best.

Day 292 - It's Not All Sunshine and Roses

There is no doubt that living with stress can play havoc with your emotions. Living with a chronic condition or a long-term challenge can knock the wind out of the most optimistic and pro-active person. Our bodies were not built to maintain a high stress level. We were built for the occasional bout with a tiger or other immediate and potentially calamitous threat. But in today's world, our bodies are constantly bombarded with one stressor or another - noise, work pressure, pollution, poor quality food, traffic, immediate and 24/7 local, national and world bad news. It is no wonder that when you plop a special challenge in someone's life it is going to wreak havoc with how they are feeling.  If I am stressed and not feeling well, I have to respect that and deal with it. There is no one that can do it for me. All of us - healthy, happy, sick or not,  experience a range of emotions. It's just who we are.

 

The relentless stress and the havoc it wreaks in our bodies and our emotions is the bad news, the good news is that every stress induced emotion has a need attached to it and when the need is met, the negative emotion subsides. If I am feeling all stressed out and anxious about what is, or isn't happening, in my life I can take steps to minimize my stress and the anxiety will subside. If I stay in the moment and focus on what I can do and what I am doing, those future worry thoughts, as well as my thoughts that focus on rehashing the past, fade to the background rather than taking center stage and making me more miserable. If I am feeling over whelmed it is a sign that something has to come off my plate. Things have probably gotten beyond me and my job is to quickly prioritize what's in front of me and let go of what I can, by either putting it off for another time, asking for help, or breaking the task down into manageable pieces. Usually if I am grumpy and moody it's because I am feeling overwhelmed, anxious, or stressed-out.

 

There are feelings of loss that come up when it seems that things aren't getting better, or worse yet, when they are getting worse. It is without question that lifestyle changes have to be made and things that once gave life pleasure and meaning have to be eliminated or adjusted. In those instances, it is time to do a rendezvous with reality and search my soul for the words to express my feelings, my longings and my grief. I can write, create, talk things through, have a good cry or find a place to share my experience and feel a sense of connection and camaraderie. The thing that will keep me stuck in sadness is not expressing how I am feeling and giving a voice to my concerns. Shutting down my emotions can only lead to anger or depression. Depression and anger occur when we don't think there is a chance for our needs to be met. So it is up to me to express what I want, what I don't want, and also what I need, so that there is a better chance for those needs to be addressed. If I deal with things before they get too big, anger and resentment won't grow to a degree that it becomes hurtful. That way I can remain on an even keel and at the same time respect that not every emotion I experience with be all sunshine and flowers, and I am just fine with that.