Day 231 - A Kinder Place than I Might Imagine

The nicest thing happened to me today. I went into NYC to visit my Lady Doc and I knew I was going to have an IV treatment. Because there is so much vitamin C in the infusion, I am directed to have fruit and veggies for lunch. Last week I headed to a little deli next to the doctor's office building. This week I went to the same spot and started to order the same thing - a large container of greens, another container with fresh fruit and a sliced banana all mixed together with a splash of raspberry vinaigrette dressing. Last week, since everything was separate, I took my stuff over to a table and mixed it all together and left to eat it up in the doc's office while I got my IV. This week, as soon as I went up to the counter and ordered my greens and fruit, the same sweet gentleman behind the counter asked if he could mix it for me. He said he remembered me mixing it for myself the week before. I said that it was really sweet of him and then he asked if I wanted him to slice a banana for me again. He got my order exactly right.

 

It amazed me that the deli guy remembered my order from the week before, so clearly. After all. this was Manhattan and he must deal with hundreds of people every day. I don't know why he remembered but, for some reason, that's what happened. I do remember that last week I smiled at the deli man behind the counter and I thanked him for waiting on me. But I never gave it another thought. I like showing appreciation when someone does something for me. Could it be that the simple gesture of saying thank you, with a smile, made him remember me a week later? I guess we just never really know when we are making an impression or a connection. Maybe that our smiles really do mean something to the people we come in contact with throughout our day.

 

My trip into NY isn't that big a deal but it does involve getting a cab to the train station, taking the train into the city and then getting a cab to the doctor's office and then doing it all in reverse on the way home. Manhattan is busy, loud and crazy and the cab ride is an adventure all its own. I don't mind having to go into NY for my fibro doc appointment but it turns into a six hour project from start to finish. It is exhausting. Last week it was seven hours, so any part of the trip that feels stress-free is welcomed. Today that nice man behind the counter made my day and made the city seem a bit friendlier. Some might say that being in the city means being surrounded by unfriendly people in too much of a rush to pay attention to the little niceties. Maybe so. But not for me. Not today. A deli guy in New York City remembered that I liked sliced bananas in my salad. Sweet.

Day 230 - There's Power in Our Shared Experience

There is power in shared experience. Tonight my hubby and I had dinner with a woman who also raised a special needs child. It was the first time I met her, my hubby knows her through his work, but it was as if we had known each other forever. Our kids went to the same wonderful school, but at different times. Part of the reason we connected is because we could so strongly relate to each other's experience and there was almost a shorthand in telling our stories because we didn't have to set the stage or create the context. We "got it". We didn't have the exact same parenting style and our families were different - she had decades long marriage and a bunch of kids and I'm divorced and remarried with two daughters and a step-daughter. She has a special needs son fifteen years older than my daughter and our lives were filled with very different experiences. What connected us was the passion we have for our kids and our dedication to holding our families together amidst the challenges of raising a special needs child.

 

Being in the same family, being from the same town or school, growing up in the same neighborhood, or sharing the same profession, interests, problems, passions or causes can create the foundation for a relationship and a sense of belonging. Having a sense of belonging is a basic human need. There is a feeling of comfort and strength when I am feeling connected. But, it's easy to let relationships fade away when I am not feeling well, because it takes effort to create and sustain meaningful relationships. It was a little bit challenging to sit through dinner tonight. After about an hour and a half I was ready to pack up my doggie bag and head home. But, the conversation kept going and I was feeling a nice connection with someone with whom I shared a lot and who had a lot to share. Having fibro can lead to lots of time alone and that alone time can translate into feeling left out instead of connected and part of what's happening. So I have to keep myself in the loop.

 

Shared experience. It's what this always comes back to. It's the way we relate to each other and a way to gain perspective on our own journey. I want to stay in touch and to relate to the people I care about - that's  what holds us together. I have only two people in my life that share my fibro experience. When we get together we spend plenty of time talking about what we're trying to do to get better, how it's working and what we need to work on next. The shared experience is powerful and I think we encourage each other and help each other to stay optimistic and hopeful. But what's even nicer is that fibro connection is only one piece of a very sweet relationship. We are more than our condition and although many of our stories start out about fibro they always seem to lead into something else that is more interesting to talk about. We can get tired of our own saga and we need to lead each other out of the fibro talk and into the other qualities we share that makes us such good friends.

Day 229 - I Can't Give In and I Won't Give Up

I was thinking today that I am really fortunate to be living in this age of convenience and how all of today's technology and innovation make my every day life with fibro quite a bit easier to manage. If I can't shop, my groceries can be ordered and delivered to my door. If I can't cook, I have plenty of options available to me for a quick and healthy meal. If I have a question, I can go online and get an answer or pick up the phone and call an expert. My meds and supplements can be purchased from a store around the corner or I can order them online and have them delivered to my door. If I feel down or confused I can go to a support group meeting in my town or on my computer. I don't have to iron clothes or even sew them myself. Life for me is filled with conveniences and even though there is no one answer to managing my medical issues, I have to appreciate that in this time and place, I am blessed to have so many supports and innovations to help me continue to function.

There was a time that every night I would write down  five things that I was thankful for or appreciated having in my life. It made really hard days less tragic when I could sit down and write about all of the blessings I had in my life. I never had trouble coming up with five things, even on days that seemed to have no redeeming value. We've all had those tough times when seeing the good in our day seems an impossible task. I can always start with being thankful for the ease of living in this country compared to so many places where people live on just a dollar or two a day. I have clean water to drink and clean air to breathe. I don't take those things for granted because someone in the past fought for those standards. I am thankful for a roof over my head and a soft pillow where I can rest my head when I feel tired or weary. I am thankful for all of the people who work every day to make my world safe. I am thankful that I have a voice and that I am not punished for speaking my mind. I have an endless list of what I am thankful for because my life is infinitely better than it might be if I lived in another time or another place.

It is important that I get out of myself and my problems. It's a really big world and I am just one little speck in a great big universe. Even as that little speck, my life is important to me and the people in my life are what I appreciate most. But if I spend my time thinking about how life has done me wrong because I have medical issues to deal with, I think I'm missing the bigger picture. Everybody has something. No one escapes this life unscathed. When I talk to my friends and loved ones I sometimes think that I am the lucky one that I only have to deal with fibro and chronic fatigue. It is important that I pay attention to my entire life and not see every little thing through a fibro filter. I have my days when I need to rant and other days when I just want to crawl into a ball and hide under the covers until I feel strong again. It's to be expected that I will have my ups and downs. But the bottom line is that there is more good than not in my life and much to appreciate and be thankful for, so I can't give in and I won't give up.

Day 228 - Another Day of Unpredictable and Uneven

Every time I think I have my "patterns" figured out, something happens that knocks my theories out the window. I had a good weekend. Two good and fun days. Saturday night I fell asleep at around eight-thirty and slept through the night. That was okay, because I needed the sleep. I woke up early Sunday morning and got my day started. I felt fine and made it through the day without feeling fatigued or limited. It felt wonderful to have a lovely day with my family! I expected that when I crawled into bed last night, sleep would come easily because my day had been full and I was legitimately tired. I did my nighttime routine, crawled under the covers and waited for sleep to come. And I waited and waited and waited. I didn't fall asleep until well after two thirty in the morning and I was exhausted. I don't understand not being able to sleep on a busier than normal day.

 

I slept in this morning to make up for my lost sleep but it didn't work. It was a bad day. I never made it off the couch this morning and I knew I didn't see things getting any better. But I thought that maybe if I got myself together I could go out for a couple of hours to meet a friend for lunch and redeem my day. Mistake. Big Mistake. I made it through lunch and I didn't let on to my friend that I was struggling. I finished my visit, got to my car and headed home with visions of my big ole bed dancing in my head. I got in the door, tossed down my jacket and flopped into bed and immediately fell asleep for a two hour nap. When I woke up I felt like my head was filled with cotton and I was wearing cement shoes. Not good. The evening got better but it's going to be an early night, I can tell.

 

It seems that there is no escape from the negative consequence of a good day, or a good weekend or lack of a good night's sleep. It made no sense to me that I had insomnia last night, but I guess that's the nature of fibro sleep. It didn't matter that I finally slept for seven hours, it didn't make up for such a late night. If I push myself on a bad day the day doesn't get better. I might get through what I need or want to do, but when my energy is gone, it's gone. There is no wishing it to be different or focusing on the positive to re-energize my body. The problem isn't in my thinking or my attitude, it's in this body that doesn't seem to be able to maintain a steady stream of energy. There are times that a busy day does me in and times that it doesn't. The ups and downs are just part of the deal. My progress is uneven and some days unpredictable, and I just need to get my head around that fact.

Day 227 - The Value of Lightheartedness - Life Minus the Drama

We took a drive out to see my daughter today. What I love about spending time with her is that she is so lighthearted - she laughs easily and with gusto! I got her started giggling and before long I was giggling, too. We went into a store and I was playing around with a couple of two-and-a-half feet tall stuffed bunnies. She was laughing so hard she was bent over and hysterical. Of course we had to make a mad dash to the ladies room because she was afraid that she was going to lose it, if you catch my drift. Well, that made us laugh even harder and it was just so much fun. I love the way I feel when I'm around my daughter and we leave all of the heavy stuff behind and just enjoy the moment. She certainly has plenty to stress over, she is multiply-handicapped and lives with many challenges as well as chronic back pain. She is a trooper and I learn from her courage every single day. She also encourages me to see the lighter side of things.

 

There is value in being lighthearted. Science shows us that being playful and lighthearted increases longevity and makes us look and feel good. One aspect of lightheartedness has to do with seeing things as important but not serious. It's an ability to be able to get through things with a lightness instead of creating unnecessary drama. Another aspect is finding ways to keep life light and playful. People have always found ways to relax and play - either in solitary pursuits or in all kinds of interactive ways like music, games and entertainment. It's important to find ways to tickle the funny bone. Findings from the Benson-Henry Institute of Mind/ Body Medicine indicate that "relaxation response alters the expression of genes involved with processes such as inflammation, programmed cell death, and how the body handles free radicals - molecules produced by normal metabolism that, if not appropriately neutralized, can damage cells and tissues." (ehow.com) Okay, that's mouthful, but it makes it very clear that when we lighten up it is good for us. Plus, who doesn't look beautiful with a big, bright smile on their face?

 

It's not easy to see the sunnier side of life when I am exhausted or in pain. When I'm feeling miserable, funny can go right out the window. So I make sure I put myself right smack dab into the middle of fun and funny. I do it by being with people with a great sense of humor, I relax and play along when something is going on that's really funny, I watch things on TV and on the Internet that make me laugh out loud and I play games that keep me entertained and amused. I try not to dramatize my troubles. I don't need a great big hee-haw of a laugh to get the benefits of good humor. A little smile, a quick giggle, or even just watching someone else having a great time helps to keep my heart  light. I don't have to see every little thing as being a serious big deal. I can lighten up and increase the quality of my life and invite other people to smile by wearing a smile of my own. There are plenty pf things in life that can cause my heart to be heavy, but I have to shake them off and remember that I only get one life to live and I want to live it fully and with some fun!

Day 226 - Managing Meds is a Part Time Job

 Worked around the house today. That was good. Spent some time visiting with family and that was really good, too. Saturdays are meant for a little bit of this and a little bit of that and that's how the day turned out for me. I am sticking with my plan of do a little rest a little. It certainly took longer to get everything done, but it worked out pretty well. Yesterday I ran a couple of errands so today was an in the house day. That was fine, too. I like when the weekend is just a routine, no pressure, no real plans and nothing to make me have to get all gussied up and I can just hang out in my jeans.The one thing that doesn't work so well on these unstructured kind of days is staying on track with my meds and supplements. 

 

When I am heading out to work it seems easier to remember to take what I need to take, when I need to take it. I kept getting distracted today so I kind of got off track. By the time I head off to bed I should be able to get in all the doses of all the stuff I'm taking. My routine starts with a pill as soon as my feet hit the floor and I have to remember to take something at least ten times a day. It's almost like I have to do one thing or another nearly every waking hour. It gets to be a bit much and I have to be really disciplined to remember every does of every med every day. Weekends make that hard. I start after breakfast with a handful of pills, then there's the hormone cream and my vitamin D drops, and then the d-ribose drink three times a day and my energy drink and then more pills during the day and then more pills at dinnertime, then a sub-lingual and then another handful of pills before I go to sleep. Yep. It was just another routine day.

 

The weekends come around and we get time off, but I don't ever get a day off from my meds and supplements or my fibro. There are days when I feel pretty good, but I still am reminded of the fibro because I have to focus on taking all my concoctions. There are days I feel like having fibro is like having a part-time job. I have to remember to order my supplements and meds, organize them, pay for them and remember to take them when I'm supposed to. It's alright though. I am grateful that I am on a plan to keep my health balanced and as good as it can be. I have to stay focused and I have to stay on top of my game. I don't get a day off, but I know that every day I do what I'm supposed to do, is a good day.

Day 225 - From Three Shades of Ugly to Complete

Ahhhh, another weekend has arrived and I am ready for it. It feels like the weeks just keep getting longer and longer. It might be because i'ts late March and this month is about the longest of the year. Or it might be because I'm still in my funk. I've been feeling low for a couple of weeks now and I think I am finally starting to feel my mood lift. Today I was excited because the shades for the sun porch were installed. Half the room had to be cleared so the nasty looking flea-market find table that was next to the couch got moved into the family room. I bought the table for it's unique shape and perfect size but the lime green color was three shades of ugly. It has been out in the sunroom next to the couch, screaming at me since the fall, waiting to be painted. I took one long look at it and decided that today was the day!

 

I bought the perfect color paint last September. It's easy for a little can of paint to go into hiding so it took me a few minutes to track it down in the garage.  I actually knew where to find the sand paper and paint brushes, so before too long I was ready to get started. I felt such a sense of satisfaction getting that job completed. Each coat of paint brought the table closer and closer to perfect and I was having fun! I tend to be a sit-on-the-floor person but I have learned that my body doesn't enjoy that as much as I do. I've discovered that sitting on one of my Yoga blocks is both comfortable and practical - it keeps my back straight and I could still be flexible enough to twist myself around as I painted. Since I've been using a Yoga block when I sit on the floor I find my back hurts less and it is easier for me to get up without feeling stiffness and pain.

 

I love doing projects and it was great to finish my project today without feeling miserable at the end. What made today different is that I thought through a strategy for completing the job in a way that didn't stress my body and still be fun. I wanted to work on the table and not make it too much of a push. So I gathered my materials and put newspaper down on the floor and moved the table onto the paper. Then I had a cup of tea. Next, I got myself positioned on my Yoga block so that I could move the tabble around as I sanded all the nooks and crannies. After it was sanded, I took another break. When I felt ready I got up again and did the first coat of paint and with each finished coat, I rested while it dried, whether I felt tired or not. It was a good strategy. It took most of the afternoon and by the time I finished I was feeling really good about how the table turned out and also really good because my body didn't suffer. Taking on a job and completing it from start to finish feels wonderful. It may have taken me six months to get to it - but I did and that's what matters.

Day 224 - What is it About Chronic that I Don't Understand?

When you know better, you do better. I am still learning my lessons about living with a chronic condition. What is it about chronic that I don't understand? Well, quite a lot evidently. Somehow, I had the idea that a one year treatment protocol meant that I was going to be on a steady path of recovery, kind of like driving up the side of a mountain. After twelve months of committed effort I would find myself at a new level of robust health, with days of fatigue and pain far behind me. I think I was just a little overly optimistic. When I started treatment seven months ago, there was no small print I missed, and no written or spoken promises that I would be the picture of energy and vitality at the end of the year. I was told the truth, that I would have underlying issues uncovered and treated and my fibro and fatigue would be addressed from every possible angle. The unknown in the equation was my body's response to the treatment. In many ways I am healthier now than I was before and I am so grateful for that. The energy part though? Not so good.

 

Stress seems to be what does me in. I'm not talking about emotional stress or worry, I am referring to any stress that is put on my body - a bad night's sleep, a too busy day, exercise, being too cold, picking up some kind of a bug or any number of other routine daily occurrences that everybody faces that I can't seem to rebound from. Travel does it to me, shopping does it too.  A day at work or a morning of laundry and straightening the house also depletes my non-existent reserve. So, what do I do now? Well, my Lady Doc has some ideas so we are off and running on a never ending quest for feeling the best I can, living with fibro. I am back on IV vitamins and now gamma globulin injections once a week to build my immunity. My cortisol has been increased as well as my replacement hormone levels. I am to religiously take my d-ribose (yuck, tastes like crap, but okay, I will) and I am having more blood drawn to see where things stand.

 

It is going to be a challenge to go into the city every week, but I will do what I need to do. I have been feeling a bit down on myself lately and that has got to stop. I can't add stress to my already fragile balance with unhelpful and negative self-talk. I go round and round with this sometimes. I have to be real about where I am but I also have to keep a positive and optimistic outlook if I am going to maximize the effect of all of the good things that are going into my body. One can't work against the other. I have to continue to re-define what is possible for me and to put an end to guilt and feeling like I am letting people down. My doctor reminded me once again, today, just as she did my very first visit - that my personality overshadows my illness. My upbeat attitude and zest for life, can cause me to have unrealistic expectations of myself and for others to expect too much from me. She even told me that I could not do any more phone consultations because over the phone I sound strong and lively, and she doesn't get a realistic picture of where I really am. Got it. So, another day. Another lesson. Another opportunity.

Day 223 - Medical News or Empty Promises?

I've been sitting here with my laptop for the past couple of hours watching a mix of cable news, international news, comedy news and news commentary. Somewhere in all of it is a grain of truth, but I'll be darned if I can tell what is real and what isn't. I remember a day when I watched the news and it was simply delivered. There were no opinions, no emotion and I was left to figure it out for myself, not have someone ramming their particular point of view down my throat. There has always been a slant to the news, I suppose, since each news source decides what they will and will not run. And now, with the endless news sources online, information is tossed out at an amazing rate. What used to take  minutes or hours to reach us, now can take seconds. Mixed in all of this is medical news and it suffers from the same degree of sensationalism.

There are more cures for the things that ail us than we can count. There are more strategies for wellness than we could apply in a month, let alone a day. There are miracle cures for any ailment, condition or illness. "Research" proves that they all work. "Studies" prove the efficacy of all kinds of lotions and potions to keep us healthy and young. There are pills, syrups, powders, injectables, drinks, things to put on, under, and around us, machines that stretch us, strengthen us and make us more flexible. There are exercises, routines and programs that assure us that if we do just this ONE thing we will find our wellness nirvana. There are camps, spas, centers, institutes and hospitals that promise if you go there for a day a week a month or sometimes longer you will leave there with your health restored and don't even get me started on weight loss.  The world is filled with promises. Empty promises.

It is my job to sort through the information I'm flooded with, and discern my own truth. I have to be the one to figure out the direction my recovery needs to take. I've grown cautious of the number one or the word only - as in this is the one thing that will cure you or this is the only thing you need to get your health restored. Yeah, right. What I believe is that I need to do many things, from many sources for many days and weeks and months to get myself well. And I believe that wellness is about a lifestyle of choices that are part of each day. It's not just about managing an illness or a condition, wellness is about the quality of life I want to attain and sustain. I may have something funky going on in my body - but that doesn't mean that all of me is sick. I've got plenty to take care of outside of my fibro. I will continue to search, and read, and explore important issues around wellness. But what I know for sure, is that there isn't one thing that will turn my life around. It will be the combination of many truths that I have implemented in my life that have put me on the right path.

Day 222 - Read Between the (Double) Lines

Reading has always been a favorite pass-time of mine. I have lost count of the number of books I have read and the last time I moved, I lost count of the number of cartons of books I gave away. Since we've moved books have crept into every corner of my house and they seem to multiply without my noticing it. The self-help and psychology sections of the bookstore have always been a favorite and I explore my spirituality through the wise words of others. I do a lot of professional reading because I always have so much to learn. I love a good story and I love getting into someone else's life for a few hours. I've read books that I didn't want to end because I felt connected to the characters and I wasn't ready to end the relationship. Silly, maybe, but some books touch me that way. I've also had my share of books that I didn't make it past page fifty. If I am not into a book I just put it aside - there are so many others that capture me, I don't want to waste my time plodding through a mismatch.

 

One of the biggest challenges I've faced with my fibro is difficulty with my vision. For the past ten years I have had double vision that prevents me from reading for too long a period of time. What happens is my muscles fatigue and my eyes drift just a tiny bit outward and it creates an up and down kind of double vision with one image on top of the other. When my vision is like that, reading is nearly impossible. Some days I can read for ten minutes and my vision goes and other days I can read longer. It helps to take a break from the page every few minutes and look at something in the distance and then close my eyes for a moment or two to give them a quick rest. But until I was diagnosed at the Wills Eye Institute in Philadelphia, I just couldn't read my books anymore. When I went there I was fitted with prisms that work for reading and on most days, they work pretty well. When I am in a crash, nothing helps and I have to admit that it is the one fibro symptom that brings fear. Losing my vision, even for just part of a day, is a very sobering.

 

My local eye doctor is actually the one who first diagnosed my fibro, although she never did find a way to help me with my double vision. I will always be grateful for her insight and for pointing me in the right direction. She left her practice and I wandered from one eye doctor to another until I decided to go to Philadelphia.  It is not convenient to go to an eye doctor almost two hours away, but this is the first doctor who after many years was able to help me. I felt an enormous sense of relief when he could put a label on my difficulty and then do something about it. I think many individuals with health issues find that they have to travel to find the best care. My Lady Doc, the one who treats my fibro, is in NYC, I'm in NJ and my eye doc is on Pennsylvania. I'll go as far as I need to go to feel the best I can feel. I think about my eyesight every day and I spend at least a little while each day with bad vision. I can deal with it, I can cope, but I sure don't want this to be any worse - there are way too many books left to read! 

Day 221 - I'm Feeling Your Pain

Babies express empathy. When one cries, others follow. The babies aren't sure why they are crying, but once one starts, they all wind up exercising their lungs in one big chorus.  Scientists are studying empathy and finding that it is soft wired in all of our brains. In studying infant brains, these scientists discovered that babies experience another baby's distress as if it is their own. Amazing. We all possess the ability to walk in another person's shoes, but because we would rather not, often we don't. It is easy to turn our heads away from another person's suffering and focus on our own wants and needs. But there is something amazing that happens when we feel the connection to our brothers and sisters as well as the creatures that inhabit the earth and the planet we all live on. I like to imagine the kind of world this would be if our hearts were filled with compassion, connection and empathy. I can't help but think it would be a better place for all of us to live.

I'm thinking about this today because I am struck by the number of people who suffer alone, even when they live in the midst of their family, co-workers, a neighborhood and a community. I wonder why empathy seems to be in such short supply when our culture spends so much time and energy laughing at other people's shortcomings, or sit as witness to their self-destruction as our entertainment. There are so many who suffer - not just from fibro or fatigue, but in ways that are just as challenging and more. I find that those who suffer most are often most willing to give empathy and support, even when it is in short supply for themselves. Maybe it is because they "get it" at a different level. 

Even when I am feeling my highest level of frustration or my lowest depth of  discouragement, there always seems to be someone or something that snaps me out of it. Sometimes it's as simple as a friend asking and really wanting to know how I am doing - not just with my fibro - but really wanting to know about how my life is going. I can tell that it is real interest because it turns into sharing stories about how we are in the same boat together - we empathize with each other. Or, it might come from something I read or listen to that seems to resonate on a deeper level that feels like connection and healing. It is easy to spend too much time cut off from the people who care about us most. I know that I have to check in regularly so that I know the connection is good and strong. I'm not always looking for empathy and understanding for myself - it's important that I be there for others as well. We all need that empathic connection - it's an emotional glue that holds it all together. 

Day 220 - Sensitive Me - Like the Princess and the Pea

I like what I like and can't really explain why. I don't know why I am sensitive to some things and not to others. Why do I cry like crazy when I peel onions and my hubby barely sheds a tear? Why do some news stories hit me like a ton of bricks when other people go to the movies to get more of the same? I can't explain my affinity for certain foods and my aversion to others. Who knows why I like the books I do, or the profession I've chosen? Having fibro has changed some of what I like and what I want to experience and I know that my sensitivities have increased. But my preferences are my preferences and simply a part of who I am. Sometimes I wish my feelings weren't so tender and I certainly wish I didn't react so strongly to things that never used to make any difference to me. Most of my preferences or sensitivities aren't really an issue unless they bump up against someone else's. It's when I'm at home that it matters most. With most things, my hubby and I seem to be on the same page so decisions are pretty easy to make.

 

I find that in dealing with fibro and fatigue I have become even more sensitive than I used to be. I've always been pretty sensitive emotionally and now I startle easily, I don't tolerate meds well and alcohol is not my friend. I am like the princess and the pea - sensitive to a tight shoe, a rough seam or a too tight collar or a wrinkle in the bed sheets. My body doesn't handle pain the way it used to either and I am less tolerant of noise or chaos. My increased sensitivity can be annoying. It has also infringed upon my hubby's preferences and I feel badly about that. One way that impacts him is in the kind of music he enjoys listening to to relax or to have in the background as he works. We like some of the same music, but we part ways when it comes to music that evokes sadness or melancholy, and I just can't listen to disjointed, ragged, jazz music.

 

Melancholy tunes just bring me down and I already fight to stay positive and upbeat. I don't need  weepy music reminding me that I am on the edge and things aren't quite as good as I want them to be. I also don't like disjointed jazz music. It puts my nerves on edge and makes me feel jumpy and uneasy. I have almost a physical response to that music and I have to get out of its way. Then here's my poor hubby, looking forward to blasting his favorite jazz tunes as he does the dishes and I don't want to hear it. I have to give him credit, because he really gets it and he rarely complains, but every now and then I know he wishes it weren't so. In the scheme of things this isn't a big disaster issue, but its one more way fibro insinuates itself into my everyday life. There are lots of things I've taken off my life list and I am okay with that, but I don't want my hubby to have to eliminate one more thing than he absolutely has to.

Day 219 - Another Piece of the Puzzle - Blocks and Yoga

Exercise is something I never shied away from. I was always physically active - playing with the kids, skating, riding a bike, dancing, doing yoga, hiking, walking and feeling good about the shape I was in. Up until my big hit of fibro and fatigue nine years ago, I thought that I would always be able to continue my active lifestyle. The fibro I had lived with until that point was manageable and I could always work around my bad days, wandering aches and pains and my fatigue. Exercise was helping back then and as long as I didn't push too hard, I felt fine after working my muscles. It's been a different story for some time now. These days, even a long walk can feel like too much but I am wanting to get back to my stronger self. I think I've found a way.

 

A few weeks ago I started working with a yoga instructor and she has been helping me to identify yoga poses that will give me some benefit without my having to exert myself too much. I am doing many of the same poses I used to practice, but now I'm doing them differently. I've never worked with blocks before, but the things she is showing me are very exciting. After a recent MRI I discovered that my back pain was from several bulging discs in my lower back. Using blocks to support poses like the bridge I can slip a block right under my lumbar spine, rest on it and remain in that pose for up to five minutes and strengthen my legs and calm my brain. The cow, locust and cat are all good for spine health. There are other poses I used to do without blocks, but the blocks support my lower back and give me a bit more flexibility. All of these poses are easy and non-stressful and I can do them even if I am not feeling all that great.  I save the more challenging poses for days when I feel more energy.

 

Some days I can work for thirty minutes. Other days it's less. But even if I can only spend fifteen minutes on a given day, working with my body, I feel a sense of accomplishment and my mind feels a bit more clear. I don't expect Yoga to prepare me for a marathon or a 5k run. What I want to do is to slowing re-claim my strength and endurance. Any journey starts with a single step and I am ready to take this step toward better stamina and endurance.  I meet with the yoga instructor just once per week. During the time apart I stay committed to the promise I made to myself to leave no stone unturned as I search for the wellness and balance in my life that I crave. This may be just a small piece of the puzzle, but it's an important one. I'm going to keep that thought floating in my mind tomorrow morning as I am stretched into my bridge pose.

Day 218 - Good-bye Harsh - Hello Mild

There isn't much I like better than the first day in early spring that I can open the windows and let in the sweet, fresh air. As soon as the temperature hit sixty this morning I threw open the sliders and opened the porch windows as wide as they could go. Immediately, the room was filled with spring and I took a deep, long breath that filled me with a sense of a new beginning. I walked outside and noticed more trees budded, the daffodils getting taller and the birds singing louder. I think of spring as a time for things to get bigger and better - the trees and flowers are in full bloom and everything looks rich and lush. I feel expansive and ready to shed the harshness of winter - all gray and brittle.

 

I want to leave the house behind and get myself outside once spring hits. I think about the beach and the mountains and sitting on the porch reading or relaxing. I can't wait to leave the house without grabbing my coat and I am tired of clunky shoes and boots, heavy socks and layers. I am so looking forward to wearing soft summery colors, and going barefoot. When it's warm, I like to start my day eating breakfast out on the porch, or sitting on the front patio with a glass of iced tea. When the weather is mild life feels so much easier and it seems that maybe the fibro will be is less of a big deal when the sun is shining and I'm feeling renewed by the change of seasons.

 

It's tough not to feel well when nature beckons and I want to be outside and not stuck feeling miserable. Today was like that. I really wanted to go for a drive or a walk and spend some time outside, but my couch won the battle. I know it's a bad day when I really want to be out and I just don't have the energy to get myself going. So, I made the most of the warm day and made sure the curtains were pulled back and that I was right in the flow of the breeze that softly blew throughout the day. When I got dressed, I made sure I wore something light and comfortable that reminded me that tough weather times are behind me. I spent a lot of time on my laptop and it felt good to have a few brief conversations and get a little bit of work accomplished. It's getting to be dinner time and we are supposed to have dinner with my in-laws. I am going to get myself together and have a nice evening. It's a beautiful day and I intend to enjoy what's left of it.

Day 217 - If it Sounds Too Good to be True - It Is

Today I got a phone call from a sweepstakes commission in - from all places - Las Vegas. The man on the phone told me I had won 2.5 MILLION DOLLARS! What's not to like about that? Well, I knew in the first ten seconds that this was a scam but I decided to play along, I thanked him profusely and told him what I would do with my winnings - I would donate a large portion to various charities and worthy organizations and the money would certainly help my mother and brother in the nursing home. I really laid it on thick, thinking he would feel guilty and just hang up. Oh no, not him. He kept explaining about these fees and processing charges as well as needing to report my winnings to the IRS. I just kept repeating - just send the check and we'll figure it our from there. He got frustrated with me and put me on hold and got his supervisor to try to talk me into accepting this wonderful and unexpected windfall.

I told him I was a really honest person and I would be happy to contact an accountant as well as the officer in my local bank to make sure I paid all of the taxes due. And, if there was a processing fee, no problem - I was so grateful to be winning so much money I would pay them double their fee and on top of that, I would give a donation to the charity of their choice and in the name of the person I was dealing with. He didn't go for that. So I approached him from another angle - I suggested that out of the goodness of his heart he could go ahead and send the 2.5 mil and just forget about the $4500 processing fee. It took a while, but he finally agreed to send ME the $4500 and I could turn around and use that to pay the sweepstakes fee. Does he think I was born yesterday? I am sure it would be a fake check that would bounce from here to kingdom come. What a scam. I even asked him what he would want his own mother to do in this kind of situation. He, of course, said he would advise her to pay the fee so she could collect her millions.

I spent more time on the phone with these guys than I should have. I just couldn't resist yanking their chain a bit. What vultures. I think people who pray on the hopes, fears or vulnerability of other people are a special kind of not nice. To spend your days looking to steal money from honest people, whether it's a fake sweepstakes or a "miracle cure" that's no miracle has got to be soul deadening. These two guys thought that if they just kept pounding away at their game, I would finally play along. I played this every way I could think of, and it got to be a game on my part, as well. They didn't like my ideas, but I did. In my humble experience, what sounds too good to be true, probably is. I've been burned a time or two and I've learned my lesson. I don't believe in magical out-of-the-blue financial winnings any more than advertisements for fibro cures. I have a feeling that if someone announced a cure for fibro, I would be skeptical for quite some time. It's hard to keep the faith when false claims of any kind are so prevalent and only about making money off of the needs of others. Like I said, if something looks to good to be true - it probably is.

Day 216 - Routine, Steady, Pretty Much Okay

Any day that fibro fades into the background is a good one. I like being on a plateau - everything all even and routine. I like when I forget that I have a neck or a head or feet. I like when they don't nag me and remind me with their aches and pains that they are attached. My energy was pretty steady today, not filled with highs and lows. I didn't feel like I could take on the world and that's okay - because I don't have to. I only need to make it through my day. The best days are the days that I have the energy to match what I want to do  and I feel like I actually accomplished something.

 

It's been a nice kind of day. I had a slow start, but nothing out of the ordinary. Work went well, even though I made a couple of dumb mistakes that were good for a laugh. Everyone at the office seemed to be in good spirits and I got to check a few big items off my to-do list. There are still a few more but I feel like the list is more manageable. I got home and was greeted by my pooch who is always good for a giggle or two. I rested on the couch reading and he was by my side, a sweet and steady companion.  All of a sudden I felt really tired so I snuck in a bit of a nap, with the cat snuggled on my lap, before I started dinner. I made a comfort food casserole and as I am writing I can smell it baking in the oven. I like days like this because any day I have the oomph to cook dinner has to be an okay day. 

 

Tonight I was reading some comments written by other fibro sufferers. They run the gambit from great day to terrible day. No pain to lots of pain. Mis-diagnosis to multiple diagnosis. No support to a wide network of caring friends and family. We are all over the place and no two days are the same for any of us. We celebrate the routine days because we know how far off center a day can go. It is important to me to appreciate my okay days and to really celebrate the good ones. I am a big fan of saying thank you. Gratitude and appreciation keep me aware of my blessings and I know that expressing thankfulness for the good in my life increases the good. What I focus on increases. So, I want to make sure to focus on the days that serve me well and to simply acknowledge what isn't so good and just move on.

Day 215 - Fibro and the Flying Monkeys

Some days I feel like Dorothy in the Wizard of Oz. I remember that in the story Dorothy woke up after a tornado and found herself in a new and strange land and couldn't quite figure out how to get home again. She met a series of characters that turned out to be reflections of her own self. She found out that she needed to use her head and heart and she had to move forward with courage if she wanted to get back to Kansas. As she was finding these qualities in others, she was figuring out how to use them to help herself. She learned that sometimes what's on the outside can help us to build what we need on the inside. When I think about this process of dealing with fibro, it seems that fibro and fatigue have been my own personal tornado and I am certainly not where I used to be. It is taking all of my resources to manage it each day. But what's really great is that, just like Dorothy had the Tin Man, the Lion and the Scarecrow to show her what she needed, there are wonderful people in my life that continue to show me qualities I can embrace in finding my way back to me. Because that's the real journey - it can't matter whether I beat fibro or not - it only matters that it doesn't beat me.

On her journey to find her way home again Dorothy faced the good and the bad, hope and despair and she even had to deal with a few flying monkeys along the way. That's true for me, as well. It's been a down week, but yesterday I found myself shifting back to the positive and I found what I can be thankful for, amidst my challenges. Every time Dorothy met the good witch, she basked in love and every time the bad witch was around it made things more complicated and Dorothy was filled with fear. It's true for me that when I focus on love and possibility I am positive and hopeful. the negative just stops me in my tracks and I become unhappy and distressed. The yellow brick road led Dorothy to the wizard who was supposed to have all of the answers. Turns out he wasn't all that he was cracked up to be. When Dorothy pulled back the curtain she realized that he didn't have any more power than she did. There are no wizards to cure my fibro and I can't rely on anyone else to make me well. It's all up to me. Sure, there are experts, but I am the one that has to do the work.

In the end, Dorothy figured out that she had already had everything she needed inside of her to get back home again although it certainly helped  to have those ruby slippers,. Those slippers represent all of the tools I have available to me, to get me as healthy as I can be. When I am clear about what I want and what I need to do, I stay better balanced and I feel better. When I make choices that bring me down, I have to accept the consequence of that. I have power and influence over my well being. I need to stay smart and use all of the information and resources available to me, I have to manage my stress and keep my heart open and connected and I need to draw upon my inner strength and courage that keeps me putting one foot in front of the other. The flying monkeys may attack every now and then with a migraine or a day of fatigue and misery, but I can manage that by taking care of myself and planning on a better tomorrow. If Dorothy can find her way home, I can too.

Day 214 - You Make My World Strong and Complete, Friend of Mine

I've got about ten pages left in a novel I started reading this weekend. The story line is about two friends who promise as kids, that they will be friends for life. The book was filled with all of the typical life events that both cement friendships or tear them apart. Relationships are enormously complicated and it takes an open heart for friends to stay together over the years. My friendships are a treasure and without my buddies my life just wouldn't be the same. As I was reading chapter after chapter thoughts of my dearest friends kept popping into my head and I realized how necessary those dear hearts are to me, especially since my social time is so rare and precious.

 

My friends are all different from each other. One travels and is smart as a whip. Another is so funny, we rarely have a conversation without laughing out loud. One friend is shy and we don't talk all that much, but whenever we do, we're on the same page. Another friend "gets me" and we share the same goals. even though we are at different stages in our lives. Some  friends know me from school or work and we've stayed in touch over years and miles. A couple of my friends know all my deep-down-in-my-heart secrets and I feel safe with the truth between us. Some of my friends are great guys and some are wonderful women. Each gives me an opportunity to be caring and giving and each cares for me. Friendship gives each of us a chance to accept ourselves and each other.

 

Family that are friends, and friends that are family, make my world strong and complete. I have days that my world feels limited and small and other days, when my friends are near, that feel more expansive. I am so thankful for all the ways we have to stay in touch and I don't know what I would do without my friends. This has been a hard week and I have to say that knowing that there are people who love and care for me keeps me going. I know they understand, because all of the friends who didn't are gone. I know they care, because they tell me. I know that if I need them they will come, because they have. I am rarely lonely, even after day after day of being alone. It's mostly because I hold so much love in my heart for the wonderful people who have graced my life with their warmth, wit, compassion, intelligence and love. Who could ask for more?

Day 213 - Bad Mood, Bad Day - A Better Tomorrow?

I think I've been replaced by my dog. It used to be that an evening spring walk was something my hubby and I enjoyed. We'd head out together and walk hand-in-hand, chatting about our day or just quietly enjoy each other's company. Now when it's time to go walking he doesn't even ask me to go along - he just goes with the dog while I "rest" at home. I'm noticing the signs of spring and I want to be outside enjoying the warmer temperatures and sunshine like we had today. Instead I am stuck on the couch, and increasingly frustrated with my energy level. I am more than seven months into my treatment and I had hoped for much more than what I have accomplished. Today was another lost day  and I am annoyed and discouraged. It's Sunday and a perfect day to go to the park or take a long walk and I'm stuck at home, yet again. I want to exercise more and be more active, but I'm just not there yet.

There is a looming question that has been hanging unanswered - what if things don't get better? What if this is it? What if I can't do more than I'm doing and my husband and I are stuck with this limited me? There are times when I wonder what he is really thinking and feeling. Even though he tells me he's fine and he just wants the best for me, he has to be asking himself what the heck he signed up for. I know he loves me and I know about the "in sickness and in health" part of our vows, but I never thought about sickness as a permanent condition and I bet he never did either. When people get sick, they take medicine and they get better. I'm not better. Therefore, my hubby is living a different life and a different marriage than what he planned and so am I. Having fibro redefines everything.

I know I am dealing with my own feelings of discouragement and I'm imagining what my hubby must be feeling. He has been wonderful and supportive, but it must be boring and lonely for him when I am unavailable and he has to rely on the dog for company. Our socializing has been reduced to time with family and a few close friends and as we get older, I worry that it is not enough. I also worry that I am holding my spouse back from a better life and I feel guilty about that. Most of the time, I am upbeat and optimistic about dealing with fibro and my hopes for some kind of a recovery. Today, for some reason, I'm not so optimistic. Moods change and feelings shift so I'm planning on a better day tomorrow. 

Day 212 - I Can Adjust but I Don't Have to Like It

It's Saturday and it was supposed to be a fun and relaxed day. We had planned to go to our town's St Patrick's Day parade - an annual event enjoyed by 50,000 friends and neighbors. There was a shift in plans and I suddenly became overwhelmed with everything I haven't gotten done and everything I needed to do. I had a bit of a meltdown and a short but emotion-filled pity party, complete with tears and proclamations that I hate my life and everything about it. That's not exactly true - I don't hate my life at all - but there are days I hate fibro with a fiery, screaming passion. Today was one of those days - but we did get to the parade.

 

I have had my fill of wasted days and lists of things that need to be done that don't. I'm tired of the reminders on my desk, my kitchen counter and my messy closet that I never have enough time or energy to do what I need to do. I feel like instead of having a seven-day week, I'm lucky if I can squeak out four decent days when something gets accomplished, including going to work. Today I was mourning the loss of all things routine and mundane because everything to me is a weighted choice. Many times it's an either or because I don't have the stamina to do it all. I've been making my choices based on what I want to do rather than what I need to do because I only have energy for one or the other. But it's really not that I only want to do fun things and not the regular every-day take care of the house stuff.

 

I like having a tidy home and I don't mind doing the work it takes to accomplish that. I love to cook for family and friends and I don't mind doing the laundry or putting away the groceries. Not at all. It's just that each day I feel like I get forced into leaving some things behind and then all of a sudden it all catches up with me. My pity-party this morning took me by surprise, but I think it's been building up for a while. A good cry can be a cleansing and I felt better after pouring out my troubles and seeing them in a new light. The world will not come to a screeching halt if I don't get everything done. A disorganized closet is not a crime. Having fibro isn't easy and I can allow myself an occasional tantrum to vent my displeasure. I didn't ask for this and I don't want it. But here I am with it. I can adjust and I do. But I don't have to like it. 

Day 211 - Pruning Bushes in My PJs - Just Another Fibro Day

Some things just can't wait. Every time I come into the house I pass by a beautiful shrub we planted two springs ago. Last summer it got very leggy. My hubby tied it to a support to keep it upright, and planned to cut it back in the fall. The fall came and went without doing the pruning since it seemed the only time we thought about it, was on the way in or out of the house. So here it is, less than two weeks form the start of spring and the bush hasn't been pruned. I know that it must be done before it starts to bud and the shrub right near it has tiny little pink buds at the end of each branch. It was fairly warm today and will be for the next few days so I figured it was now or never.

 

It's been a serious couch day. I crawled off the couch at around three o'clock when the fog and exhaustion was finally starting to clear and got something to eat. After I ate, I started to feel a bit better. The UPS guy left a package at the door and rang the bell. When I went to get it, I once again noticed the flopping branches. I thought to myself, it's time to get this done. So I pulled on my sneakers and put a fleece over my pajama top and headed out to take care of business. How ridiculous -  I had just spent the better part of the day flat on my back and here I was outside, pruning a Grape Myrtle bush. Just goes to show there is no rhyme or reason to how I might feel at a given point in my day. If you had asked me at noontime if I was going to be outside pruning, I would have just groaned, rolled over and ignored the question as being totally preposterous.

 

I continue to be fascinated by the irregularity of my hours, my days and my weeks. Each has more ups and downs than a Six Flags Roller Coaster minus the thrills. The human body is such a miraculous piece of machinery that I am amazed when anyone is healthy and nothing goes wrong. With my energy system so out of whack, it has become an object of curiosity to me. I am filled with why questions that have no real answers. Sure, I have my list if what is going wrong where, but the fact that all this stuff was somehow triggered is amazing and hugely complicated. So I question - what did it take to tip the balance and what will it take to bring me back to center? It's pretty crazy that I can go from bad to fine to great to terrible to awful back to great and all the way to super in one tiny, little week, Amazing. Really, really amazing.

Day 210 - Gotta Face it - I Can't Do it All

A couple of months ago, my family helped me to come to the conclusion that I needed to ramp up the support I am getting around the house. Every day tasks take on a new significance because I so often deal with a serious level of fatigue. There were lots of things getting put on the back burner (and the kitchen counter) and then it all seemed to catch up with me and I felt stressed and frustrated. There are a few things that have made a lot of difference and I am feeling a bit better about what needs to be done around the house and how we get there. First and foremost, my hubby has stepped up big time and is now doing more cooking. He always said he was a good "heater-upper", but now he cooks healthy and tasty meals. He has taken on the grocery shopping as well, and even prefers doing it himself rather than relying on the local delivery service. He has pretty much has taken over the kitchen chores and has always been great about feeding the pets and shopping for their food, too.

 

If I'm home alone and having a really bad day, nothing, and I mean nothing gets done around the house. I don't cook, I don't straighten up and the mail starts to pile high. I don't make the bed, I don't empty the dishwasher and dishes start to pile up in the sink. It takes every bit of energy I have to feed myself, let alone feed and take care of our dog. My hubby does all the dog walking and trips to the local dog park. Whenever he has a business trip, a friend takes the dog so I don't have to worry about walking him, especially early in the day. He's a big dog and needs two vigorous walks each day so it takes a lot of pressure off of me. I can at least manage the cat. I am also blessed to have someone come for a couple of hours per week to do the heavy cleaning.

 

It's not just the really bad days that take their toll on the way the house looks and is organized. After work, I'm about finished. Fridays I am recovering from the work week and for whatever reason, weekends and Mondays aren't usually much better. Seems like work gets most of my good energy - not my house. I have been sticking with one major activity per day and that has helped me to keep my crashes from being too unmanageable, but it sure makes it tough to get things done. I have never been a perfectionist housekeeper, but I do like my home to feel comfortable, welcoming and pleasing to the eye. I don't mind doing laundry, preparing meals, cooking for company or decorating the house for each season as long as I have the energy and then a reserve left over. I just can't do it all. We've downsized and I've been forced to simplify and do things very differently than I used to. I can live with that, because it leaves me with the energy to do things that feel way more important.

Day 209 - Too Tired to Even Sit up Straight

Today was a really good, busy, tiring, gotta do it all again tomorrow, kind of a day. I had a six hour meeting and by the afternoon I felt myself fading a bit (mmm, make that a lot). Anyway, my work team is all kinds of smart and I have to be on my toes to deal with what comes up at our meetings. At the same time I am energized and inspired by their dedication, passion, motivation and leadership. I don't want to let them down. We ended the day with an early dinner and I headed home. As soon as I got into my car and knew I pushed too hard. I figured I had to eat dinner anyway, so I might as well go out with the group. Not such a good idea, as it turned out. I drove home, walked in the door, got into my jammies and hit the couch. I've been sick to my stomach so I hope it was just something I ate. Ugh.

 

One thing that always thrills and amazes me about continuing to work is how much energy I can "borrow" from my team. They are so positive and upbeat it's hard to feel sick around them. They inspire me to continue to work and to draw on my reserves to bring my best game. It doesn't seem to matter to them that I have my down days because when I'm down they lift me up, They aren't always right next to me, but I feel their support. I am so blessed to have such genuinely caring professionals to work with and I am sure that if I was working anywhere else I would have stepped down long ago.

 

A day like today is fun and invigorating and I hardly pay attention to how I feel or how much reserve I have left. It is the kind of work day that makes me use my skills and when I'm in the midst of it I feel strong and relevant. There are so many days I just crash on the couch with my hair looking all ratty and nasty, wearing sweats and no makeup and feeling like something the cat dragged in. When I get myself all put together and go into the office, I know I have to be responsible to others and I find energy I didn't know I had. But then comes the down side - that sick-tired feeling that goes beyond exhaustion. It's like there is nothing left - not even enough to sit up straight or carry on a conversation. But tomorrow I'll do this again and I have to say I am looking forward to it - I just plan to crash the minute I get home again. It's worth the trade-off every now and then.

Day 208 - What Was, What Could Be, and What Is

There is value in looking back as long as I don't spend too much time in the past. Every moment I spend re-living my past is a moment robbed from the present. Reflection is a good thing, happy memories are a treat and learning from my past, or exploring the past to make the present better are all worthwhile endeavors. When I hear myself think or say, " I used to be able to...", I know it's time to pull myself back to this moment. I've learned lots of hard lessons in my life and my philosophy has been to remember the lesson and let go of the experience. That's been a helpful filter for keeping me from dwelling on what was, and moving into what is and what might be.

 

Even projecting into the future isn't enormously helpful if I want to have a peace-filled and balanced life. I can plan all I want, but I never know what the next minute of my life will bring - but really - who does? I can predict what may happen next based on past experiences and patterns, but living in the future, just like the past, robs me of the present. So where does that leave me? Well, right smack dab in the here and now. I've always been fascinated by the fact that the present is really just a breath and as soon as I recognize it, it is already behind me. We have words that generally describe living in the present such as now, today, at this time, forthwith (fancy - huh) and currently. But each moment goes by in a flash - now is so fleeting.

 

So why all this examination of being in the present? I think it's because I continue to develop an increasing appreciation for all of my moments - good, bad or otherwise. I determine the quality of each moment and my day. Bad day on the couch - I've got a comfy one in a warm and pretty home. A headache - good meds and a job that allows me the flexibility to take care of myself if I can't get to work. Stuck at home alone - there's the computer, TV, phone, books, snacks and my pets. Every moment has value. I may have to search a bit or settle for a small token of good in some situations, but the value is there. Some days I struggle to stay in my day and not wish for something different. Other days I may spend time reminiscing about what I used to do and where I could have been, were it not for fibro and it's complications. When that happens I do an attitude adjustment and instead of focusing on what was or what I wish could be, I fill my days with what is and see where that takes me.

Day 207 - What if it's NOT Fibro - and it's Something Else?

It wasn't great news to hear that I have several bulging lumbar discs. A disc bulge in the lower back can cause low back pain or numbness, tingling, burning, or sharp pain. I've been experiencing all of those symptoms. I've had these kinds of problems off an on, but always attributed them to my fibro. The symptoms became more severe a couple of months ago so I made an appointment with my neurologist, had an MRI and waited for my results. I'm not happy, but I'll deal with this the same way I've dealt with all the other symptoms I've addressed over the years.

It's easy to attribute any aches, pains or strange symptoms to fibro and chronic fatigue since those conditions have such a wide range of symptoms. I am often tempted to ignore new symptoms instead of immediately talking them through with my doctor. I hate to call my doc about soemthing that's going on with me and get the answer that it's just the fibro, don't worry about it. With that answer it feels like I just have to put up with whatever is going on and there isn't much I can do about it. So, typically, I don't make the call and I wait until my next appointment. The trouble with that is without proper, or sometimes immediate treatment, I can get myself into trouble by allowing the symptoms of an additional condition to get the upper hand. It is my responsibility to follow up with my doctor whenever there is something out of the ordinary, or when something changes, even if I would rather not.

My good days tend to be defined by the amount of fatigue and fog I am experiencing, rather than my physical discomfort level. So even on what I call a good day, I am still dealing with typical fibro aches and pains as well as this additional back pain and discomfort. It's like a constant chatter in the background of my days. It was a smart move to contact my doctor when I had pain I couldn't explain and I am fortunate that my doctor went ahead and ordered an MRI for me. Once I could clearly identify the source of my pain, I could move ahead with my treatment plan. There are days when I feel like I am a laundry list of symptoms, but I have to stay on top of them and treat my body with the respect it deserves by addressing what ails me.

Day 206 - Run, Walk, Trip, Fall

Whew, what a day! And night, too. Last night I just couldn't fall asleep. The last time I looked at the clock it was well after two thirty in the morning. I have no idea why - I didn't have caffeine, I didn't have worries running through my mind and I went to bed at a reasonable hour. I woke up  around eight this morning with another headache, took my meds and woke up again at eleven fifteen. The rest of the day has been spent in a sickly fog and I just woke up form another cat nap. It's been quite a while since I've had a day like this. I really hit the wall. Last week was busy, I know, so I guess this doesn't come as a complete surprise, but I certainly didn't expect to feel this bad. What a crummy way to spend a Sunday.

Wasted days are part of the landscape of dealing with fibro and chronic fatigue. I am writing each day to chart my journey and i was thinking that it might be interesting to view these days in a graph - it would be full of jagged ups and downs. I wonder if there is a pattern. I wonder what it would look like. I am resigned to the ups and downs and I don't expect for it to be much different than its been. There is a difference between acceptance and resignation. Today I feel resigned to having low days and that feeling carries sadness and frustration. Days when I'm feeling acceptance I am more at peace and I don't add that layer of negative judgement.

There are days when I am moving forward and it feels like I am unstoppable. Other days I'm moving at a slower pace, but at least I'm still moving. Sometimes I feel like my day is in fits and starts - like I've tripped but I continue to stumble along without ever really getting my footing underneath me. Then there are the days that I fall. I'm down. No movement, no heading toward the finish line, no energy to get up again. I might not be able to get up today, but my energy will come back at some point and I will get up again. Tomorrow is a new day. I may be up or I might be down. No matter. It is out of my control and control isn't the name of the game anyway. It is up to me to adjust my attitude and to accept what comes with grace and the certainty that a better day is possible.

Day 205 - A Sisterhood of Pain and Healing

Woke up early this morning with a migraine. took my meds and flopped back into bed and slept for another couple of hours. I had a hair appointment and got up just fifteen minutes before I had to leave. I brushed my teeth, ran my fingers through my hair, took my meds and headed out the door with my bag of make-up in tow. At each traffic light I applied one more layer of spackle so when I walked through the doors of the house of beauty, I wouldn't scare anyone away. It was of no use, I still looked like hell. Two seconds into the conversation with my stylist she said (with much concern), "Are you okay? No offense, but you don't look so good". "Migraine", I replied.

 

She was so sweet. She must have told a couple of other stylists while I was changing into my very stylish beauty parlor gown. When I came out, there were three young ladies standing there, ready to tell me their migraine stories, advising me to drink plenty of water and then making sure I had a tall, cool glass ready for me. I was then taken back to the "special procedures" room and my hair was done in a space where there was no one else, no noise, confusion, bright lights or peppy energy from the rest of the staff. It felt so nice to be tended to that way. I was almost in tears leaving home because i felt so crappy, but I knew if I didn't keep my appointment it would just complicate another day in my week. So I soldiered on and I was met with a healing energy that made it a better day.

 

It is wonderful that we have so many people around us who really do understand when we're not feeling our best. Just because we are the ones with a label on our troubles it doesn't mean we are the only ones who suffer or struggle with pain and illness. We have to remember to give empathy, support, and words of caring to others who have their own troubles. I don't ever want to get so wrapped up in my own drama that I forget that I have plenty to offer to others and they need to feel cared for as well. We are all connected, all in this together, and few us of experience something no one else ever has. Yes, we are special and unique, but we also have a lot in common. When we strive to lift each other up and lend a hand to those who are down, the world becomes a little softer, a little nicer and a gentler place to be.

Day 204 - Fibro Sure Has its Share of Surprises

"In the world of silent illness, life becomes non-linear". (Sveilich,MA). Ummm, no kidding. I never did think much of life was moving in a straight line, anyway. But certainly, throwing an invisible, chronic condition into the mix has its share of surprises. I was reading today that abstract thinkers have a bit of an easier time coping with the unpredictability and chaos that can result from the ups and downs of managing a silent condition.. Mostly because people who are more into ideas and possibilities are more into thinking that anything can happen anyway and they problem solve within that kind of framework. On the other hand, concrete thinkers who expect that if I do A, B will naturally follow. do not embrace the unpredictability quite as much. An example might be, if I take meds like the doctor told me, I will feel better or if I rest tonight I should be able to go to the family party tomorrow.

Concrete problem solvers expect a good plan will result in the outcome they planned for. With fibro and fatigue and a host of other invisible conditions, an action just does not guarantee a particular result and that creates additional frustration and disappointment and even anger. Abstract thinkers tend to want to think of lots of other things they can do and sometimes get frustrated that there are just too many ideas and possibilities for treatment and feel bogged down and unsure of their choices. We don't control whether we're born thinking in ideas and possibilities or have thoughts based in what is practical and real. One isn't better than the other. That's a gift given at birth. Whether our heads are more in the clouds or our feet are firmly planted on the ground, we are all challenged to find a different way to see our daily lives and make those adjustments.

There is a real sense of a loss of control with fibro - not just with not being able to rely on our bodies, but in the way we live our every day lives. It wreaks havoc with making plans for a safe and predictable existence (which those concrete thinkers thrive upon). Security is a basic need for everyone and when the rug is pulled out from under us it can be frightening. It appears that research has shown that if we tend to solve problems presented by fibro and fatigue a bit more creatively we might find it less difficult to adapt to our illness. It might be helpful for all of us to let go of our attachment the outcome of the plans we make and decide to make the best of whatever is presented. That decision just might start us on a new path for expressing our lives and a different way of seeing the possibilities as we create each new day.

Day 203 - The Scary Statistic that We Must Rise Above

This next paragraph is part of an article posted on the Fibro and Fatigue Center Website in January...

...Danish Researchers recently reported that women with Fibromyalgia have a ten-fold increased risk of  suicide. Alongside the physical burden of chronic pain and debilitating exhaustion, sufferers cope with other losses that often accompany this syndrome: loss of self-esteem, loss of activity, loss of identity, disruptions in primary relationships, loss of motivation, loss of mental acuity, loss of job, loss of hope. The impact of FM/CFS on a life can be devastating. It’s important to be sensitive to this. If you or someone you care for is experiencing suicidal thoughts, Please seek help...

That is some pretty serious stuff. I have been blessed with an optimistic personality and I think that my innate optimism prevents me from visiting the depths of despair experienced by some who suffer with fibro. The list of losses in that article is certainly significant and can feel overwhelming. I believe that it is in my best interest to focus on what I still have, what I can do and what is still possible in my life. It takes emotional effort and focus to stay above the negative self chatter and to put it in its place. It does me no good to only see my losses. I do understand how some folks can become overwhelmed to the point of feeling hopeless. Life can be enormously challenging even without dealing with a condition like fibro.

The last line of the paragraph makes sense. "Please seek help." People would if they could. I think that the scarcity of medical support, treatment and understanding tops the list of why fibro sufferers become frustrated, discouraged and eventually pessimistic and hopeless. How many more stories do we need to hear about how a doctor shamed us, dismissed us or didn't take our symptoms seriously? It's one thing when your neighbor makes an insensitive remark that basically tells you to get over yourself, you don't look sick, But what about when it's your doctor saying that to you? It is not too much to ask, that the medical community is at least sensitive and supportive, even if they are not sure how to treat our symptoms. There may not be clear cut answers yet about what manages fibro best, but we all have to keep our optimism, create a support system, and hope for a better day ahead.

Day 202 - Dare I Hope for More?

Something good is happening. I've noticed that this week I have had more energy than usual. I'm not sure if it's the beginning of the end of winter, but I have been waking up a bit earlier than I had been and I have had more energy to get things done during the day. Monday I got involved in a project in the house and I worked longer than I had planned. I thought, no problem, I'll rest a bit more on Tuesday to make up for it. Tuesday came along and it was a more complicated day than it was supposed to be. I didn't get to sit down until after dinner time. Oops. My thought - I'll rest after work on Wednesday. So, today it was supposed to be work, then home, but my daughter was sick and needed my help so there went that idea. The good news is - I'm okay! I did draw the line at visiting my brother tonight at the nursing home. That will wait until Friday. 

 

It may sound silly, but I get excited by three good days in a row! Those days when I can do what I want to do when I want to do it are precious to me. I feel optimistic and energized by being energized. It feels wonderful to wake up to sunshine in the morning and feel as if I can take on my day. After so many weeks of feeling limitation and frustration I get almost giddy at the thought of feeling well and capable. I've missed me and I've seen a glimmer of that old, happily busy, me. I know, I know, don't push it, pace myself, don't over do it - I get those messages loud and clear. But, my energy this week felt clear and real - instead of the more typical adrenaline pushed energy that happens when I am called into action

 

One of the hardest things about having good days like this is when they are followed by more crummy ones. After each good period I've experienced, I think I've felt more disappointed than the last time when the old fatigue sets in. It is disheartening to see progress slip away. If I have both the emotional and physical energy to draw upon I can manage my pain on good days and really get things done. I continue to work really hard on my attitude to make sure I keep my head clear of distracting and draining thoughts and emotions so I can really enjoy my days. After a few good days I don't dare start to think that this could be permanent, while at the same time I am willing it, with all my heart and soul. I cannot give up hope, and at the same time I have to be real about what I need to do to be well. So I stay in the moment, loving that I've had these good days and wishing for many, many more.

Day 201 - We're All in this Together

Over the past couple of days I've had a few conversations that revolved around medical care. I don't want to be political about it, but I just don't understand how a country with the prosperity we enjoy, doesn't take better care of its own citizens. When I went for my MRI yesterday, the technician and I were talking about the economy and she was telling me that their center was slow. I could see that for myself. There were lots of empty chairs in the waiting room. She said they had been getting fewer referrals and people were having to fight for approval for tests - even when they were extremely ill with cancer and other conditions where they clearly needed the care. She also told me that a number of MRI centers had been closed in our region because of the cuts in reimbursements. Sick people were being sent to locations that were approved by insurance, rather than what was most convenient for the patient. Very sad.

Another conversation was with my mother who is in a nursing home. Her meds were changed without any consultation and she was put on med that was covered by her insurance, but in the past she has not been able to tolerate. I question why it is that insurance companies get to decide when we're treated, how we're treated and if we're treated. I am not complaining about this for myself. I have pretty good health care coverage and I have had pretty good luck with my needs being covered. I do remember one time when my neurologist prescribed Provigil and my company refused to pay and instead said they would cover an addictive stimulant instead. Huh? Luckily I can fight for myself and I got what I needed in the end.

When my doctor won't refill prescriptions over the phone anymore because he isn't reimbursed enough to cover salaries for his office staff, that's a problem. When medical malpractice insurance is so steep an outstanding doctor has to close his practice because he can no longer afford that insurance because a partner retires, that's a problem. When a doctor prescribes meds that the insurance company likes, and not what you need, that's a problem. More and more I see that we are all connected. What helps one of us. helps us all. When you are sick and in need, I don't want you to be turned away. I read all the time about fibro sufferers who cannot afford treatment and it makes me heart sick. I do hope that as awareness of fibro and fatigue grows, we can all join together to make sure that no one is left behind when the treatments we all need to be wel,l are available.