Day 350 – A Migraine with a Crash or A Crash with a Migraine?

When I wake up with a migraine is it because I am having a crash or do I have a crash because I started my day with a migraine? It's kind of like the chicken and egg question and regardless of the answer, when I start the day with one of my monster headaches, it does not bode well. This was a couch day and it was a rough one. I couldn't be up for more than a trip to the bathroom and I felt like my get up and go got up and went - totally. I felt really wiped out with zero energy for anything. What a waste of time to be on the couch when the sun is shining, there's a soft breeze blowing and I am in a place that looks and feels like heaven.

We were up in the mountains with friends for the weekend and had plans for a dinner cruise tonight on one of the big lakes in the Adirondack Mountains. By mid-afternoon it was clear that I wasn't going to be going anywhere today. Some crash days start to turn around in the late afternoon and I can actually have a pretty good night even though the day was a washout. When we called to cancel the reservation, we were told the full amount for the night-time cruise would be placed on my credit card. That wasn't what I wanted to hear, and it didn't set too well with me since we had given four hours notice. But I understand that they might not fill those seats and they also have to prepare food based on reservation numbers, and so on. Our friends generously said they would pay their share, but that made me feel terrible, too. I didn't want them to have to pay for an experience they didn't have because of me. I finally convinced them to go ahead without us and have a good time.

My crash days can complicate things. As it turned out, we got a call back from the boat company and our money was refunded, in full. Everybody heaved a sigh of relief and it simplified our decision making. It's hard to be the one that causes the change in plans. It happens a lot and I don't feel very good about it. I'm not feeling guilty, per se, but more like I've let folks down. No one blames me and I am usually the one that is harder on myself in these situations. I am getting much better at letting those feelings pass through without dwelling on them or making a big drama out of it. If I could have gone out and had a fun evening I certainly would have. A crash ruins my plans too, not just everyone else's. My hubby and our friends went out for their 'last night here” dinner at a local spot. I'm thankful that I'm upright and able to finish my blog. I'll grab some yummy left-overs from the fridge and finish my day working on getting my energy back.

Day 349 – Responding to Change and Living My Life

Change happens. We are up at the lake and the water is way down. There hasn't been much rain this summer and it shows. We had a rainy spring and the evidence of that is clear, too. The beaver lodge along the shore used to be huge, but the spring floods washed way the top layer of the den and the neatly trimmed pieces of wood that were crisscrossed over it are strewn through the woods along the new water line that was formed as the water come upp on shore. There's more muck along the water's edge and the dog's feet get all gunky after he comes out of the lake from a swim. The pickerel weed is almost gone, drowned by the high waters and so the lake looks a bit wider, and that's nice. Our path to the lake is overgrown because the trees the beavers chewed have died, and the canopy of leaves is gone. So now instead of a soft forest floor of mulch, the weeds are enjoying the new sunshine and they are growing in new places. Every year it looks a bit different, but always beautiful.

The changes at the lake seem dramatic because we aren't here all the time to see the slow transformation or even experience the big events, like the flood. We're up here one time and it's one way, and the next time it's noticably different. I like that change happens and that we can witness the transformation nature creates. Changes in the woods aren't good or bad because nature has a plan for every felled tree, for every new plant and for each animal because they plays a specific role in creating a robust system. The changes here are a metaphor for the changes that I go through as a result of my health issues. Some of the changes are dramatic, I wake up one day and there they are, but many other changes are more gradual and I don't notice their impact until they have been around for a while. I try to make note of improvements, but it takes a while to be able to say, for example, I'm not getting migraines the way I used to, or my pain level is much better. There has been slow but steady progress with many of my symptoms so now when they do appear, it feels out of the ordinary, more like a thunderstorm than the steady rains of springtime.

It is important to be self aware with my health struggles and improvements, but I have to take notice without being overly involved with every ache and pain. I have to live my life with a focus on what I love and what I need as well as what I can do for others. If I focus primarily on my symptoms, my world gets very small very quickly – I am so much more than my symptoms. Sometimes I have to be patient and wait for changes to happen. Then, over time, improvement occurs and then it becomes clear that I've made real progress. The beavers living in their lodge, had to wait out the flood and as soon as the water receded, they got right down to business fixing things up. That's the way I like to live my life with fibro and fatigue. I will hunker down when things are rough, but as soon as my symptoms recede I am back to my life and I go at at full tilt. I have to make the most of every good day. And just in nature, it's my responsibility to focus on keeping my system healthy and in balance.

Day 348 - Stress Reduction - Count My Blessings

One of my favorite ways to reduce stress and to feel better about whatever challenges I have going on in my life, is to count my blessings. When I can focus on what is good, I am able to put whatever is troubling me in better perspective. This afternoon I had a really neat experience that reminded me how very blessed I am. Way back in May, my hubby and I traveled up to our cabin and spent the weekend relaxing and taking advantage of the beauty nature has to offer. When we go upstate, we try to support local businesses because they depend heavily on tourist dollars and there are a few shops we go back to time and again. I have a favorite shop in a town called North Creek and I purchased a couple of things for the cabin as well as two silver cuff necklaces. One necklace was for me, and the other was a gift for my step daughter. I was very pleased with my purchase and I couldn't wait to wear my the silver necklace and to see if my step-daughter liked hers as much as I liked mine.

When I got home from our trip I could only find one necklace, the one I had put in a gift box for my step-daughter. The other necklace, as well as the other items were in a small gift bag, but nowhere to be found. I looked everywhere I could think to look and was finally convinced that the next time we went back to the cabin, I would find that bag. But I was sure I had packed it in the car, so it was a real mystery. Knowing my fibro brain, I couldn't be sure I was remembering correctly. So here I was left with just the one, very pretty silver necklace. I have to admit, that when it was time to give the silver necklace to my step-daughter, it was very hard to part with it, because I loved it so much. But, I gave it away, just as I had planned and was happy that she liked it. When we got back to the cabin in July it was clear that I hadn't left it there and it remained a mystery as to how it could have just disappeared. Oh, well.

Last night when we got back to the cabin, the message light on the land line phone was bright red, so I played back my messages. Imagine my surprise when I heard from the shop in North Creek saying they had my bag! The fella from the town dump found it and returned it to the store. The shopkeeper searched my name on google and tracked me down to let me know that she had my items waiting for me! Seems when my hubby took the garbage out of the back of our vehicle, the gift bag dropped out without him noticing it. The man at the town dump picked it up and then drove thirty minutes to return it to the store, hoping they would figure out who it belonged to. Incredible. I count it among my blessings to be able to spend time in a little town that knows what honesty and integrity means. I am blessed that there was someone willing to go out of his way for a gift bag of trinkets, just because it was the right thing to do. I am blessed that the honest shopkeeper didn't just put those items back on the shelf to sell again. I keep shaking my head in amazement. What are the chances?? Actually, pretty good when counting blessings is a way of life.

Day 348 - I'm a Medical Consumer - Please Do No Harm

I was reading today that healthcare is the place to go for a profitable career - partly because of an aging population, but also because there is profit to be made in the industry. One line in the article stood out because of its absurdity. It stated, "Consumers often become even sicker through accessing the healthcare system, thereby generating repeat business". That is a pretty powerful statement and one I have heard before. One of my biggest concerns in being treated for a chronic condition is that I am going to need to manage this condition for my entire life. That means if my meds have serious possible side effects, I could be doing damage to my system and then that damage would need to be treated. Many meds that are promoted for fibro care are newer meds, or meds that started out being used for another purpose. The long term effects of these drugs is largely unknown, so I have to be an informed and savvy consumer. .

 

This situation creates a real dilemma, I need meds but I also need to make sure the meds do no harm. I have been offered just about every drug there is for fibro and fatigue by a good number of physicians who had no other options. I tried some of the meds they prescribed, but had immediate side effects that were intolerable. That's probably a good thing because those signals from my body let me know this was a drug that could have created other problems for me. Some doctors were okay with my not wanting to continue a med, others weren't very supportive. That is until I found my Lady Doc. She is a holistic physician and she appears to be very good at putting together a plan for me that helps without hurting. I am on a number of meds and supplements and I have zero side effects. The supplements I take are supported by research as being effective and I have read up on a good number of them because I want to know what I am taking. Some of the meds I am taking have been around for a very long time and that gives me a sense of confidence.

 

Individual doctors seem to me to be sincere and I appreciate their point of view. But I have to make my choices and do what I believe is best for me over the long haul. I have had a couple of doctors say I was non-compliant, which is a nice way of saying I wouldn't do what they wanted me to do, I read, I research and I ask questions. I believe it is my responsibility as a patient to know what course of treatment I am involved in so that I can do my part to comply. There have been doctors who were impatient with me when I had a question or didn't understand what they we saying. I stayed with those doctors for exactly one visit. I remember one doctor in particular who had me near tears because I didn't understand the results of a particular test and I needed more information. His tone of voice and his dismissive manner made me feel uncomfortable. So with test results in hand, I moved on to another more compassionate physician and got the answers I needed. I continue to ask questions and look for answers. This journey is a long road and I want to feel confident that my medical choices will serve me well on my way to increased wellness.

Day 347 - Learning and Re-Learning to Live Well With Fibro

I don't have to like the limitations that living with fibro and fatigue brings, but if I am going to have a happy and satisfying life, I need to make peace with them. Acceptance doesn't mean I've given up on increasing my overall wellness and it doesn't mean that I won't continue to seek out the best that the medicine has to offer. I can accept where I am and continue to plan on getting better. I can rely on traditional medicine as well as holistic and non-traditional treatments to create robust health and a better mind-body-spirit connection. When my mind is at peace and my heart is open, I am open to healing that comes from many sources. Everything that is good and beautiful and pure is a source of healing and who is to say that one healing experience holds more value than another. Love heals. Nature heals. Prayer heals. Acceptance heals.

 

My struggles are part of my spiritual journey and not a single one of us escapes life's challenges, so why should I think I am unique in any way? My labels for my challenge may be different from another individuals. but who doesn't experience pain or on occasion, overwhelming fatigue? My experience is one of degrees - more than some, less than others. I am learning and re-learning lessons as a result of my experience- patience, curiosity, determination, discipline, perseverance, optimism, faith, humility and a host of others. My lessons are not more or less important than anyone else's, but they are mine to embrace. I can continue to grow and expand my spiritual awareness through this journey or I can reduce it to complaints and negativity. I want to be strong, not weak and it's the soul of me that defines my strength.

 

Each challenge I face, whether it is getting through a day when I am fatigued and unproductive or trying to figure out the next step in my treatment, is an opportunity to learn to be more accepting of myself and my condition. I don't have to be flattened emotionally every time I have a setback if I keep in mind that the expression of my illness does not define who I am or the value I have as a woman. I can feel compassion for myself and treat myself with the same level of care and acceptance I would extend to any other person that I love. The fact that I have met enormous challenges in my life helps me to be more accepting and compassionate toward others who are suffering or struggling through a particularly difficult situation. Like I said, I don't have to like living with fibro and fatigue, but fighting the fact that I am challenged is a waste of my energy. I would much rather gather my emotional and spiritual strength and work on crafting a happy and satisfying life.

Day 346 - Down and Out but Not Over and Done

Years ago I started saying I was sick and tired of being sick and tired. It's been one of those days. I am feeling a bit discouraged because this summer has been rough. My fatigue is getting in my way a lot more than I can accept and although I am doing whatever I can to make things better, I am sick of it all. I'm not depressed and I am not giving up. I am just taking a few minutes to complain and feel a bit sorry for myself. I figure I can indulge a bit of negativity every now and then and if I purge those feelings by talking them through or writing them down, they will pass more quickly. Denying my down days doesn't make much sense. I have had plenty of down days that have had absolutely nothing to do with fibro or fatigue and I got through them. This is no different. It's just the combination of sick, tired and down is just rough.

 

I wanted to do something today instead of just hang around feeling tired and grumpy. It was a beautiful summer day - not as hot as it's been - so getting out of the house was a good idea. I headed for a little antique shop that I like, and then I went over to visit with my daughter for a little while. It was enough to break my mood for a while, but once I got back home I felt myself go back down in the dumps. I walked the dog thinking that a bit of exercise would be good for me. The exercise was good for my body, but my mood still feels stuck. I am caught up in thinking about this hidden viral infection that was diagnosed and still not treated. I just don't know what to do. There is a chance that it can't or won't be treated and that means things will stay as they are. That will require another level of acceptance for me.

 

I have always planned on feeling remarkably better after focusing so intently on my recovery, and maybe that was just an unrealistic expectation. But, hope is what has moved me forward and kept me on track and I am not willing to give up. So far I have trusted my instincts and I think I have made good wellness choices.  It's easier to think things through when I am feeling calm and focused. But a down mood clouds things a bit and I don't make my best decisions when I am feeling pessimistic. I understand that moods come and go and I'm not particularly concerned with having a couple of down days, even though I don't like the way they feel. Last night I had a series of bad dreams so I know I am feeling ambivalent and concerned over the decision I have to make about treatment. So I am focused on doing the things I know how to do to keep myself on an even keel and I expect in a day or so I'll be feeling like my old upbeat self again.

Day 345 - I'll Be There for You, 'Cause You're There for Me Too

My friends are amazing. There are friends who have been with me my whole life and some I have met along the way. I talk with regularly with some of my friends, and others I see for coffee or a meal. I have guy friends and girlfriends. A few of my friends are relatives and others aren't, but they feel like family. There are qualities that my friends have in common that I hope they know I appreciate. My friends are people who care about others and the world. They are people that are dedicated to the well being of others and they express it in their families, their community, and their work. I have been fortunate to have dear, sweet, funny, sharp. silly, insightful, empathic, and loyal friends. I don't know where I would be without these dear people in my life.

 

All of us have had to make it through tough circumstances - life is full of them. We share with each other and somehow we always seem to make it through to the other side. One of the things I love about my friendships is the level of honesty and sharing. My guy friends are as dear to me as my girlfriends, and we have proven that guys and gals can build a solid friendship. Some of my friends share easily and others are a bit more reserved, but at the end of the day we know, without a doubt, that we are there for each other. Women who have learned to be fiercely independent know that leaning on a friend isn't a sign of weakness, it's a sign of strength and being able to depend on each other is what friendship is all about. Sometimes it's hard for me to feel so vulnerable in sharing what's in my heart, mind and even my soul, especially around the vulnerability I feel with my illness issues. But I trust my friends and I know my heart is in safe hands, just as theirs is with me.

 

The past few years I have needed my friendships as much as ever, maybe even more. I certainly have spent more time alone the past year than I have ever spent alone in my life. But even in my isolation, my friends have stayed in touch in lots of ways that have made me feel connected and appreciated. We use the current social media stuff, phone calls, email, and visits. They are full of interesting news and we always wind up laughing and finding the lighter side of life. Because of my health concerns, phone calls and visits have really suffered - there are lots of days that I don't even have the energy for a phone call let alone a visit to socialize or get caught up on each other's lives. I hope my friends understand. I've tried to be clear about why I am not so good at staying in touch, but friendships need attention. I get that a friendship can't be one-sided, and I haven't been terrific about holding up my end of the relationship. It's been a while since I've made a new friend, but even if I never make another new friend in my life, I appreciate the riches in friendship that I am blessed to share. 

Day 344 - A Little Bit of the Party is Just Enough

My daughter called this morning and she was happy and in a great mood. As we were taking about how we were spending our weekends I could tell that she was having a good time. At the end of our conversation she said she loved her house and her program (she lives in a group home). It made my heart feel good to know that things are going so well for her. This was a wonderful family weekend. I love being around young people. I am inspired by the way they see the world and I love their energy. When I am around young people I can't help but catch their energy and enthusiasm. Little ones giggling crack me up and I love to watch the young adults that we love and care for, finding their way. It is awesomely wonderful to be a part of all the things that are going on, and even though it's a bit chaotic at times, that's just part of the joy.

 

I am committed to my family and I love to be a part of whatever is going on. An afternoon visit, babysitting, a quiet dinner or a big celebration are equally important to me. I feel enormously disappointed when I can't participate in what's going on. There have been many times when I have had to bow out of a celebration or my hubby has gone ahead with plans without me. Those times are difficult, but I have learned to take care of myself so that when I do participate I can be fully involved. Yesterday I missed out on most of a family celebration, but I was able to show up for at least the last couple of hours. My hubby's nephew and his girlfriend were celebrating their birthdays and the whole family was getting together. I stayed back and rested and finally got over to my sister-in-laws in the evening. It was worth going over, and I had a great time once I got there. Family has been very understanding and supportive and that means a lot.

 

A little bit of fun is better than none at all. I feel badly that my hubby has to go ahead to family gatherings and events without me, but I think we have things pretty well figured out. He is very easy going and that helps a lot. My kids are great about letting me set my own pace and I work really hard to be there for them when they really need me. When my kids were young and I was working I used to tell them that even though I might not be there every moment that they wanted me, I would always be there whenever they needed me and I have held myself to that pledge. It's one thing not to have the energy to do some work around the house or to be able to commit at work 100%, but I have always been fiercely devoted to my family and I will do whatever I can do to be on their side. This weekend I missed a party, but I was there to wish the celebrants a happy birthday. Once again, I couldn't do it all, but I could do some and it seemed to work out just fine.

Day 343 - Exercise, Crash. Exercise, Crash etc, etc, etc

Couch days are getting to be a bore. I have been working on increasing my exercise and I am pretty sure I overdid it yesterday and I paid for it today. I walked over to the pool which is just a couple of blocks away, but the heat was intense. I was in the pool for less than an hour and played around in the water with the kids. I didn't think if it as exercise and that may have been a mistake. As I mentioned a few days ago, I want to increase the number of steps I walk each day and I have been taking a walk each evening, well after the sun goes down. It hasn't been warm at night - it's been hot, so the walks had that additional element for my body to adjust to. I can't be sure it was my additional activity, but my guess is that yesterday, I did more than I should have and today I just crashed.

I'm not certain that I will ever know for sure what causes a crash day. I have only been working toward my increased steps for less than a week, but even with the added exercise I haven't had more couch days, but they seem to be a little worse. I need exercise, but it is so hard to get into any kind of a routine because my days are so unpredictable. Today I head-achey, and I had that sick feeling that made me just want to close my eyes and shut out the world. I got up around my regular time, but then I was only awake for an hour or so before I went back to sleep and then slept for more than three hours. I need to find a way to build up my body without fatigue taking over every time I make an effort.

I am coming close to the end of my three month leave of absence and I am not better than when I started. This has been a rough summer and I am feeling desperate to have this turn around. I want more than this fibro life is offering me right this minute. But, I know that whatever this life has to offer, it is up to me to make the most of it. I am concerned about my overall health. Exercise is always mentioned as essential to heart health, disease prevention, stress reduction and improved overall health, as well as longevity. I want those benefits but I how to get them if I can't even take a fifteen minute walk around the block without crashing? I refuse to give up and I am going to persevere with this. I am going to keep walking and keep making an effort to make exercise a part of my daily routine, I might as well if I am going to crash anyway.

Day 342 - To Treat or Not to Treat - That is the Question

I spent the day researching the HHV6 virus and its connection with chronic fatigue syndrome. I am feeling very confused about this next phase of treatment and part of that confusion is the ambiguity of the research around the success of treating this virus and its impact on the wellness of those who are treated. I have been making a list of questions for my Lady Doc because I need to talk through these areas of concern and confusion. After reading dozens of articles, I have definitely decided that I will not take the anti-viral drug that is most often recommended to treat HHV6. It is a toxic drug with many potential and sometimes dangerous side effects. I am just not comfortable taking that kind of risk when the outcome of a six month regimen is not guaranteed.

There are many alternate treatments for treating a viral infection that I would feel comfortable pursuing. Granted, they are not identified as being the most effective, but in the scheme of things, I think I feel better going that route. I haven't talked with my Lady Doc about the treatment she would choose, I just know that she told me the treatment would make me feel worse before I felt better. The only research pieces I saw that reported any kind of success were with the more toxic anti-viral drugs. I am at the point in my treatment wrere we have addressed all of the issues that showed up in my blood work as well as addressed all of the complaints I have brought to my doctor. I am taking a supplement or a med for each symptom and I have made improvements. But this virus has me stumped. I don't know the implications of not addressing my infection and that's a question for my doc.

This past year it has felt like taking care of my health has been a part-time job. I have invested time, money, energy and effort in my determination to turn things around. I have been more than satisfied with my medical care. I feel like I feel like a am a partner with my physician and I don't think we have left a single stone unturned. But the truth of the matter is that fibromyalgia and chronic fatigue are still mysterious conditions and there is much to learn about how we contract these illnesses and how we can treat individuals so they can get their lives back. Each person expresses their symptoms differently, but we all struggle with, and share familiar symptoms. Fatigue has always been the one thing I have not been able to overcome and the thought that treating the HHV6 virus might give me back my energy is very tempting. But I have to listen to that still small voice inside me that says that the risks may outweigh the benefits. I will hold the question and wait to talk with my lady doc and hear more about her plan. 

Day 341 - Rough Day, Tough Plan, Strong Lady

This hasn't been my best day. To start, it was hotter than Hades and I did my trip into the city. The streets felt like a furnace and I couldn't wait to get back home again, The cab pulled up to my front door and I discovered that a magnificent oak tree, that had to be a hundred years old, had been removed. The tree was there when I left this morning, and I had no idea the tree was scheduled for removal (I live in a townhouse community). I probably reacted more emotionally than I might have on a different day, but I wasn't exactly in a cheery mood after my doctor visit. My Lady Doc went over my meds and blood test results and I am continuing to make progress medically. My cholesterol is below two hundred and I have been of my cholesterol meds in the late winter. My white blood count is better and many other markers show improvement. The one thing that is not showing improvement is my level of debilitating fatigue. I am still having many days that I don't move off the couch.

 

Enter the bad news. Since lots of other things are doing well, the reason I am still so fatigued is probably because of the viral infection that was discovered in my blood work.. We started late last winter fighting a bacterial infection with antibiotics, and I needed a second round in late April, but now my doctor thinks it is time to treat my HHV6 viral infection. I am to expect to feel worse before I feel better, and from what I've read, these anti-viral meds are no picnic. I am continuing to take supplements to build my immune system and build myself up so I am ready to take on this next challenge. I do not feel emotionally ready to begin treatment. This battle is tough and I am giving it my all, but the thought of feeling worse again before I feel better is just too much to stomach. When I was treated for my bacterial infection I was on the couch for a month. I understand that this could be harder than that. It's a sobering thought. 

 

It is rough to continually battle feeling exhausted and sick. I am really good at putting on my happy face, but there are plenty of times I am all alone and I just feel lousy. I feel blessed that my body has stayed strong enough to keep me from depression, but I really understand why depression is so often partnered with these chronic conditions - continued pain, feeling sick, discouraged and disappointed creates a direct path to sadness and finally depression. I have been blessed with an optimistic nature and I can get as down in the dumps as anyone - but I seem to have a constitution that keeps me on the bright side. The thought, though, of starting this new protocol does not appeal to me. I know if I expect to have an opportunity to heal, this infection has to be addressed. I am brave, I have good support and I trust my doctor, so when we are ready to start my treatment I will approach it with courage and the intention of coming through on the other side stronger, healthier and better able to manage these chronic conditions.

Day 340 - It's a Heat Wave, and I'm Not Participating

We're having a heat wave and I am not participating. There is no way I am going to go out in this oppressive heat that has been hanging around here for the past few days and is expected to continue for at least a few more. I have severely limited my outside time and when I do go out it is to go from one air conditioned place to another. I cannot tolerate temperature extremes and I find myself getting all groggy and sleepy when I have been out too long on a sweltering summer day. I was busy yesterday but I was fortunate to do all I had to do in the comfort of a well cooled room and I got to take a dip in a swimming pool. I know how blessed I am to be able to control the amount of time I am exposed to the heat.

 

Up until just ten years ago, I had never lived with air conditioning, and except for the most extreme days of summer, I liked it that way. I like the way the house smells so fresh in the summer and I like that I can feel the change of seasons, Mostly my house was cooled with strategically placed fans and only the bedrooms had air conditioning, Even an air conditioned bedroom wasn't part of my summer until after I had kids and developed summer allergies. In order to get any sleep at all, I had to have a pollen-free room and air conditioning did the trick. I still like to sleep with the windows open at night, even if the night is warm. My allergies aren't an issue anymore, but central air is the new normal. On these really hot days I appreciate the modern conveniences that allow me to stay cool, comfortable and at least a little bit energized.

 

Tomorrow I have to head into NYC for a doctor appointment. I tried to change it, but the doc's other available dates don't work for me, so it's off to the city I go. It is supposed to be near one hundred degrees tomorrow so I am not looking forward to spending time in NYC traffic and being surrounded by tall concrete buildings that hold the heat. But, I will plan accordingly and make sure I carry water with me and if I feel like I am overheated I will head for an air conditioned space. I don't like to complain too much about the warm weather because it is so much easier on me than the really cold winter stuff. The warm seasons seem to be too short and pass much too quickly. It feels easier for me to cool off in the heat, than it does for me to warm up in the winter. So, I will take these days as they come, make the best of my situation and enjoy every single minute of summer, knowing that those chilly days and nights aren't so far off.  

Day 339 - Gotta Get My Get Up and Go, Going

Today was really hot - well into the nineties and I still had a good day. I set my alarm this morning and got myself going. I have set some goals for myself for the next few weeks and I was eager to get started. I am becoming increasingly concerned that I am not getting enough exercise. Nearly every day I read something that speaks to the benefits of regular exercise. My generation didn't grow up with the idea that you got exercise from going to a gym. I was a very active kid and as an adult I found ways to be active that didn't include a gym membership. I've spent a lot of time walking, I've hiked, done kayaking, canoeing, yoga, floor exercises, aerobics, light weights and I raised a couple of very active kids so I have always felt like I was in pretty good shape. Until now.

I still do some yoga and I work every now and then with kettle balls, but I need a regular routine that includes easier things I can do on my not-so-good days, understanding that on bad days, exercise is not an option. So today I played in the pool a bit with the kids and that was fun. I've gone to the pool a few times by myself this summer and I do like to do some swimming. It's easy on my body and I feel like it's a start. Tonight my hubby and I took a nice walk. My goal is to get out and walk every day that I can and get myself up to 8,000 to 10,000 steps each day. The past months my exercise has been very sporadic and that must change. I have to do this for my overall well being and since I have had a few good days in a row, I feel motivated to begin in earnest.

There is no significance to choosing this day to begin a new goal. It's a Tuesday in July, it's not an anniversary or my birthday or a date that signifies any particular event. What's nice about setting a goal is that this is up to me to do this my way. Today just happens to be the day that I set my mind to making a change so now it's up to me to make the change happen. Summer is the time of year that I feel most motivated to do projects and when I have a few good days I start to think about what I'd like to accomplish. Warm weather (not hot) agrees with me, so the evenings are a perfect time to start my walking routine. It was a lovely evening, it felt good to be out in the night air, listening to the cicadas, crickets and frogs. I started to work on my exercise goal and even though I am not any where near where I want to eventually be, every goal starts somewhere. This goal started with a lovely walk and I'll be back at it again tomorrow. 

Day 338 - Yahoo! A Therapy Delivered on its Promise

A few weeks ago I had a couple of sessions of a therapy called Ortho-Bionomy. I wrote about the positive results and I am mentioning this again because I am still enjoying the benefits. There are so many mends and therapies I use that don't give me a clear answer as to whether or not they are working I sometimes just give up on them and move on to something else. This therapy worked! I had two problem areas addressed, each in a one hour session, The first issue was that my shoulders slouched forward and my posture reflected years of fatigue. The Ortho-Bionomy session corrected this and my posture is better than it has been in years and I feel less neck and back strain because I am in better alignment. A second problem was that my hip was not properly aligned and caused my left foot to splay out when I would lie down. That was corrected also and remains in alignment after all these weeks, with no additional effort on my part.

 

The fact that a therapy actually delivered on its promise is a very big deal to me. I have invested (make that wasted) quite a bit of money trying various things that I thought would restore my health or solve a particular problem, only to have the problem return and sometimes with a vengence. There are certainly strategies I have used that have been of great benefit and over the past months I have shared some of that information on thus blog. What I appreciate about Ortho-Bionomy is that it is a non-invasive strategy that is used for pain management and relief. It doesn't hurt, I can do it when it works for me and I can reap the benefits for a very long time. What's not to like? I have another appointment coming up next week and I will be interested to see what we will work on next.

 

One of the toughest things about dealing with a complex medical situation is that what works for one person may not work for another. Our systems are compromised in different ways so that may explain the inconsistencies. I get excited when I find something that really works for me and especially when it doesn't involve a lot of time, effort or expense. For the cost of a typical massage I can do body work that actually changes my body. There are an incredible number of options for improving health and vitality. certainly the basics are important - sleep, good nutrition and nutritional supplements, treating any underlying infections or medical issues as well as movement and some kind of exercise are all important to recovery. But sometimes our bodies need a bit of a jump start to get things moving in the right direction and I think I have found a therapy that can do just that.

Day 337 - Summertime, But the Livin' Ain't Easy

Summer is half through and I am just loving it. I love the sunshine, the flowers and trees, the yummy fruits and veggies that are in season and I especially love the easy lifestyle summer brings. Even though my body doesn't like extreme heat, I can easily find relief on hot days in an air conditioned space. Even when it's hot during the day, summer evenings always feel soft and gentle. There is nothing better than falling asleep on a summer night with the windows open, a fan stirring a gentle breeze and the sweet smell of summer filling the room. I sleep best on a summer night and I really like waking up to the morning sun coming in the window. A bad fibro day is easier to tolerate in the summer. The summer puts me in a really good frame of mind. It's hard to feel down or discouraged when the sun is shining and I can sip an iced tea out on the porch and just relax.

As much as I love summer, it didn't make today any easier. I woke up at my regular time with that half a headache feeling that means it is going to be a rough day. I made some breakfast and then had to lie down for a bit to get myself together. The back porch was a perfect place to gather some energy. I had some chores to do around the house as well as a couple loads of laundry. My hubby helped and then he ran to the grocery while I finished up. Between each task, I had to sit down. Made the bed, sat a bit, folded a load of clothes, back to the couch, freshened the guest room for my brother-in-law's visit, down again. That's how the day went and some rest breaks were longer than others. I probably should have just given up and left everything for another day, but I do that far too often. I got done what I wanted to accomplish, but I sure wish it had been an easier day.

By late afternoon I started to feel better and was able to go out for a while with the kids and then had dinner with my bro-in-law and hubby, I sure wish the ups and downs of my day would smooth out a bit. I continue to work on striking the balance between taking care of myself and taking care of the details of my life, I like to take care of my home and I get a lot of satisfaction out of creating a warm and comfortable place for my family and friends to visit. But I also know that I have to keep my expectations realistic. Summer is a time for kicking back and taking it easy, but that doesn't mean things don't need to get done. I wish the summer was a magic elixir that made me well. but it isn't. But, on good days and bad, I can still appreciate and enjoy all the wonderful things about the summer and take advantage of every good thing it offers.

Day 336 - Sometimes I Just Need to Get Going, to Get Going

I've got just a few minutes before I have to drag my weary butt off this couch and get myself ready to go out. It's late afternoon of day three of the blahs. I am supposed to go to the beach tonight for dinner and a walk on the boardwalk. But truth be told, it isn't looking very appealing. I love the beach, especially early in the evening when the sand is cool on my feet and the beaches are deserted. The sun doesn't feel oppressively hot and it feels wonderful to just sit and watch the waves rolling in. As much as I love the idea of going out, I don't really feel like it. But, I'm going to go anyway because I have learned that sometimes I need to get going in order to get going. There's a law of physics that basically says that an object that is at rest will stay at rest unless some outside force acts upon it. So as long as I stay on the couch, I am more likely to stay on the couch. But I'm not an object, I'm a person.

The external force that is getting me moving today is my commitment to my hubby that we will do something fun for ourselves this weekend. Most of our socializing involves family and I have to admit that other than those activities, we don't plan much else. So regardless of my slow day, I am going to push myself (in a good way) and get out of the house and have a great night. I have seen that law of physics in effect in my daily life, again and again. Unless something really gets me going, on a bad day, nothing gets me going. But on a blah day, once I am up I seem to build momentum as the day progresses. The later afternoon into the evening is my very best time of day. That's why we planned to leave late afternoon instead of going to the beach for the day, We are taking advantage of my best time so I can truly enjoy myself.

Another law of physics says that once an object is in motion, it's won't stop unless something gets in its way. Fibro and fatigue are the typical culprits that stop me dead in my tracks. We all operate within the rhythms and cycles in our bodies. We eat because we get a hunger signal and we sleep because our bodies tell us we can't keep our eyes open one more second. We wake up because we have cycled through the various levels of sleep and we are supposed to wake refreshed. I sometimes feel like my body has forgotten to send certain signals. I wake up fatigued and I'm not sleepy at the end of the day. The time of day when most people are busy at their jobs, I am feeling tired and depleted. When the day is over that's when I start to feel energized and I have to make myself go to bed because at night I'm just not sleepy. I can't rely on my body's signals so I suppose I have to be my own outside force that gets me going and keeps me going.  Right now my body is telling me to go to the beach!

Day 335 - I Can Give a Little, But Not a Lot

The doorbell rang late this afternoon and two very nice ladies from my neighborhood had stopped by to tell me all about the first-ever block party happening next month. We started chatting about some community issues and some of the projects that need to be done, when and if local funds are released. Money is tight and our town has suffered its share of budget cuts so anything that can be postponed is going to be, Our conversation turned to a suggestion I made to our homeowners association when I appeared before them to have my back porch project approved. One of the ladies that came to the door remembered my suggestion and after chatting for a while, asked me to head up a committee to make that change happen. She wanted me to create a four person committee, write up a proposal, send out notification to community members and then bring the proposal and the community feedback to the homeowners board of directors. I was flattered, but that little voice in my head spoke clearly to me about setting priorities.

I like the idea of taking on a challenge and doing a little something as part of my community. I like having a project and I loved that my idea was honored, but just as in other situations, I had to say no. I don't want to volunteer to be in charge of anything, even a small committee to change the lighting in our neighborhood, even though I felt complimented to have my idea honored. My philosophy these days is that I may not be able to do everything, but I can do something. So, with that in mind I decided to figure out a way that I could contribute without taking on too much. I sat down at my computer once they left and I did an internet search to suggest some ideas and that will be my contribution. Now, the block party is another story. I look forward to the opportunity to meet my neighbors and to have a relaxing afternoon chatting and eating good food. Also. it's a one time thing that I can attend or not, all of it or part of it, according to how I am feeling that day. I will bring my dish of whatever to contribute to the meal and have myself a good ole time.

Everyone's life involves setting priorities and my life is no different in that regard. I spend my energy carefully, and I know that if I spend my time on one thing, it will take time and energy away from another. It's kind of like a young kid on an allowance. Kids have much less money than the adults around them, just the way my energy compares with my peers. Once the allowance money is gone, it's gone. Just like my energy reserve is finite and I can't use more than I have, kids can't apply for credit and increase their funds on a whim. So after a splurge or two, kids hopefully learn to make spending decisions so that they get to spend their precious dollars exactly the way they want to. That's what I am doing by making the choice to say no to something that will deplete me. I want to use up my allotted amount of energy on high priorities and then feel satisfied that I've made good choices. I can give a little rather than a lot and then we're all happy.

Day 334 - I'm NOT Giving in - I'm Taking Good Care

Having a bad day has gotten to feel like no big deal. It has become part of the rhythm of my life and whether I am having a good day or my day is a struggle, I remain in balance and I don't feel like my emotions are tweaked every time I feel sick. When I don't feel well, I have learned to just lean into it and accept that it will take some time to move through it.  There isn't really much I can do when I'm in a funk, so it makes sense to gently move through my day, do the things that nurture me and let go of whatever I might have planned, knowing that it can happen another time. It has taken a long time to be able to accept that I am going to have days when little is accomplished in terms of a job well done. My big accomplishment on a bad day is that I am taking care of myself - and that is enough.

 

Accepting a bad day is not the same as giving into it. I am way past passing judgement on myself that labels me as being lazy or weak. There are lots of phrases that point to the fact that a person needs to "suck it up", "pull yourself up by your bootstraps", "don't give into it", "fake it 'til you make it" and a slew of other cliches that do not honor the fact that there are times when soldiering on is not the best strategy. When I listen to my body, I believe my crashes are shorter and I feel better sooner. I am not perfect at listening to my body. Sometimes my body screaming at me is like one of those car alarms that you just want to ignore. But when I ignore the signals I reap the consequences.

 

I had three good days in a row this week and then yesterday and today weren't so good. But, here's the thing, it's okay. Not good. Not great. Not wonderful. But okay. I can deal with this. I can catch up on little things that don't take much energy or focus. Today I started to feel better later in the afternoon so that's when I hopped into the shower and got ready for the day. Up until then I was in sweats, hanging out on the couch, waiting for my energy to kick in. If I try to do too much when I feel depleted, I just get sicker and sicker and that just doesn't work for me. I can push (even though I shouldn't) if I am having a good day, but not on a bad day. I took care of myself yesterday and today and as a result I had a really nice evening, and I am still feeling energized. Actually I feel like a completely different person than I did this morning. I've come to understand that just because a day starts out rough it doesn't mean the entire day is shot. And the reverse is true - I never know how long my feeling good will last. That's my reality. I can accept it without investing a lot of emotion into it.

Day 333 - Risky for Me - Routine for You

I was driving down a local highway today, on my way to pick up my big ole fluffy dog who needed a bath and a trim. I glanced out of the passenger side window and saw an older woman (who presumably should have known better) trimming the hair over her lip with a tiny pair of scissors. I really couldn't believe my eyes so I slowed down to take another peek and my initial observation was confirmed. Amazing. Driving at 50 mph and grooming her upper lip and thinking nothing of it. I was surprised that this lady thought this was the very best moment to do her personal grooming, but who I am I to say? I suppose I have had my own share pf personal lapses, but I think I'll save my shaving for the privacy of my own home. It got me to thinking about the choices we make and the risks we take.

 

I keep plodding along, doing what I am supposed to be doing to get my health back to where it used to be. I am not engaging in risky behavior with my diet, my sleeping or not taking my meds. I am resting each day and when I overdo it a bit, I pull back and get myself back on track. I feel confident that I am on the right track and I can see that I have made some progress. I was talking to my dear cousin (who also has fibro, bless her heart) and I was telling her that I think my fibro is getting to be under control. My pain is well managed, my migraines are much less frequent and my wandering pains are all but disappeared. It's the chronic fatigue that is my nemesis. I just cannot fight the endless fatigue that hits whenever I do anything beyond just the very basics in life. Chronic fatigue carries many of the same symptoms as fibro so distinguishing the two isn't easy, but I am thrilled that I am feeling less pain and that my sleep has improved.

 

When I see someone who is putting their life at risk by doing something as silly as trimming hair while driving I get a little annoyed, well make that really ticked off. I am struggling every single day to keep my life together. Every decision I make impacts the way I feel and every time I crash I review my choices to see if there is something I could have done differently. I am working hard on recovering as much of my health as I can and I can't afford risky behavior. For me risky is as simple as not getting enough sleep or skipping my meds. It bugs me that someone will knowingly put their own well-being at risk when I have to put so much effort into getting through my day. But, at the end of the day, it's not any of my business what other people do, risky or not. I have to be responsible for my own choices and make choices that promote my well being.

Day 332 - Three Good Days - Do I Hear Four?

Three good days in a row. I like it. Every now and then I get a nice stretch like this and I actually feel like a regular person. It's easy to forget that I am managing a health issue when I am pain-free and I'm not feeling exhausted and fogged out. I know it is easy to overdo it if I am having a string of good days, but I find myself looking for things to do because I have energy and I can get all caught up with things I have had to put aside on bad days. But, the one major lesson I have learned is to STOP. Even though I feel like I had a bit of energy to spare today, after I got home from bringing my daughter back to her home, I made an iced drink and sat down to read a magazine and relax. When my hubby got home from work he offered to cook dinner and I didn't protest, jump up and do it myself. I am learning.

 

Another lesson is that I don't have a single thing planned for the next two days. I will use the time to rest and store up some energy to replace what I have used with my daughter here with me. There isn't anything that can't wait to be done, except for maybe getting this months' bills paid - but that can be done online with minimal effort. I have learned to look past things that need to be done so that I don't continue to push beyond my limit. When we go away for a weekend, it takes me days to get unpacked and get the laundry done and put away again. If my suitcase has to sit for a while until I get to it. So be it. I have learned that I have to set priorities and then stick to them. A week or so ago, both my daughter and son-in-law gave me mending projects. I finally finished up yesterday while I was sitting on the patio. I waited until my head felt clear so I won't make mistakes (again).

 

One of my wellness goals is to increase the number of good days I experience and especially to have a stretch of good days that lasts more than just a few days in a row. That would allow me to 'create some kind of predictable rhythm in my life. When my good days are unpredictable it is easy for me to lose track of what I've been doing and then I have to jump back in the middle of where I was, and figure things out all over again. There are times that I begin a task and stop mid-way through because I have run out of energy or my concentration isn't good enough to finish. I also find myself making silly mistakes, on even simple tasks, that I wouldn't make if I was feeling better. More good days would mean I am more accessible to family and friends. It would mean that and I could pursue my many interests and enjoy more social activities. I am thrilled with the good days I've been having, but I know that tomorrow could go either way - it could be another day of feeling well, a crash, or somewhere in-between - that's just the nature of fibro life. Tomorrow is another day. I will take good care by pacing myself and hope that my three good days becomes four!

Day 331 - Some Days Just Have to be Busy

I worked hard today, really hard. When I have my daughter home with me I don't get a moment's rest and while she is here there are lots of things I have to take care of for her before she goes back to her group home. I have been putting off shopping for her summer clothes and since it is the second week in July, back-to-school supplies are starting to hit the shelves as well as fall clothing. So if it wasn't this visit, it wasn't going to happen. We went to a department store that would have everything we needed so I wouldn't have to go from store to store or go anywhere near a mall. I never did get a handicapped sticker for my car, but after today, I will definitely get one. It was over ninety degrees and even though we got to the store late morning, there were lots of shoppers who filled the spaces close to the entry, so we walked. My daughter walks slowly and on a hot day, all I wanted to do was get into the air conditioning again!

Once we got in the store, We had some shopping to do but I was the one who had to do the work. I checked out each item we purchased with my daughter and every once in a while there would be something she spied on a rack that she liked and it would go into the cart. She needed sandals and trying them on her is tedious because her feet are very tiny and she has bunions. But, we found a couple pair and now that's done, too. Shopping with my daughter is like shopping with a little kid, even though she's over thirty years old. I have to keep an eye on her every minute or she will wander off. If I was looking through a rack for the correct size, that would be enough time for her to scoot off. She has severe hearing loss, so if I call out to her, she doesn't hear me so I have to go searching until I would find her a row or two away. To say that it's exhausting is an understatement. But I have responsibilities and I intend to fulfill them.

I used to order many of my daughter's clothes from a catalog, but I am terrible at returning things that don't fit, so it's just not an option anymore. We got everything she needed with one stop. After that we got some lunch and then headed home and went for a swim. Our day was absolutely wonderful and lots of fun, but I was on duty every minute. I could feel my energy just draining out of me, but sitting for lunch was a boost and once we went for a swim, my daughter was tired, too. So we went back to the house and sat on the patio and had a snack. It gave both of us a chance to regain some energy and we had a lovely visit. My son-in-law stopped by with my grandson and we all had a great time. The visit was short, but it was wonderful for my daughter to spend some extra time with her nephew. When my hubby got home from work I heated up left-overs and then I begged him to take my daughter out for a while, so I could collapse on the couch. He did and I got to rest enough to build up my energy to get her ready for bed. We watched a little TV together and cuddled until she fell asleep. I am ready for bed, too and I plan on catching up on my rest once I get her back to her program tomorrow.

Day 330 - What are You Looking At?

This evening I had an experience that no person with a disability wants to have. I took my daughter (who I have mentioned, is multiply-handicapped) out for ice cream and to go for a little ride on a beautiful and clear summer evening. We had the windows down, the sun roof open and the music blasting. We were having a great time together and she and I were both relaxed and totally enjoying our evening. We got to the ice cream place and when we got in line to order our cones, there were two girls, about eleven or twelve years old who I noticed pointing at my daughter and giggling. I couldn't be 100% sure they were making fun of her, but I had that feeling in my gut that said that's what was happening. I gave them that mother "look" that should stop any young kid in their tracks, but although they stopped pointing, they didn't look guilty or sorry, for that matter.

 

We moved to another line and I think the conversation between the two tweenagers turned to other things. But I could still feel a sick feeling in the pit of my stomach and I felt so sad for my sweet and wonderful daughter that she was the butt of their jokes. As I stood there in line, processing what was going on, I realized that because I have an invisible illness, no one makes fun of me in public because of my particular limitations, but because my daughter has some special features that set her apart, she is fair game. But visible or invisible, both my daughter and I deserve respect and the freedom to go where we want to go without the discomfort of another person deciding we are "less than". I suppose I could have been more vocal with those two young ladies, but as I said, I wasn't 100% sure that their giggling was about my daughter's appearance and disability - but I am, of course, a mother and as a former classroom teacher, I do have a sense of these things.

 

I am pretty sure my observations were on-target and I wasn't over-reacting to the behavior of the two young girls. So what I did was to stand close to my daughter, with my arm around her and I kissed her on the head as we stood waiting for our turn. We continued to talk about what we wanted to order and everything was fine with us. What I wanted to show those girls, who continued to occasionally glance up at us, is that my daughter is loved and cherished. I did not want to get into an ugly exchange with those children and stoop to their level of negativity. The fact of the matter is that even though I didn't say anything out loud, they knew that I knew what they were doing. We have been in other situations where I have stepped up and said something about the rude behavior of others toward a person with a disability. But our time together was sweet and my daughter didn't notice what was happening, so I wanted to keep the evening nice for her. She deserves that, too.

Day 329 - A Dose of Little Kids is Good Medicine

I get a kick out of the abandon of little kids. I love that they run as fast as they can, that they pitch a fit when they don't get what they want, they don't want to miss minute of the day by sleeping and if they don't want to eat something, they simply won't open their mouth. A two year old will stubbornly refuse to follow the direction of an adult, even though that adult controls their food supply and their very survival. They are brave beyond what makes sense to us, because they don't know enough to be fearful.

 

I love that kids want to swing as high as they can on a swing, get as wet as they can when they play with water and don't care if their face is covered with ice cream after they finish eating their cone. Kids sing even when they don't know the words and are generous with their love and affection. Kids know what they like and are clear about what they don't. Their security can come from a blanket and can't sleep without it. When they wake up in the morning it's a brand new day and they are ready to fully enjoy life's simple pleasures. Everything is new and exciting and a walk with a child is filled with discovered treasures.

 

Kids cry when something hurts and stop when they are finished expressing their grief. They trust and they rely on us to be good to them. Kids teach us a lot about living from spirit instead of filtering everything through social convention. There isn't much that is more fun than getting the giggles with a little person because after a while they just laugh because they are laughing and it tickles them that life can be so silly. I have to admit that I feel my very best when I am around little ones. There is something about their energy that is contagious and I feel better and stronger when they bless me with their presence.

Day 328 - In the End, Change is Just Change

While I have been home on medical leave I have set the intention of making some decisions about my lifestyle and the amount of energy I am willing to spend on working outside my home. I am considering the shape and scope of my career at this stage in my life. I have friends younger than me that are retired and friends much older who are still working. It seems that continuing to work is a very personal decision and age has little to deal with making a sound decision. What seems to be important is that an individual has exercised a measure of control over the decision to stay or go. When I am thinking things through, one day I am decided and the next I feel unsure. On one day I am energized by the idea of being back at work and the following day I feel energized by the idea of letting go of some of my responsibilities. It's confusing and I still don't know what I want to do.

 

I have worked since I was a kid and I have loved going to work. Each job I've held after I finished college was my absolute favorite while I was in it. When I got to the next job, that one got to be my favorite too, and I realized that it didn't matter what my job was, I loved my work. My career choice suited me and it has served me well. I have worked for other people and I have worked for myself. I started my own company when I was forty years old and have loved watching it grow and find its purpose in the community. Well, now I am facing the possibility that my job is going to change again and I am not ready for my health to drive that decision. I take a lot of satisfaction in working and it is important to me that I serve others and make a difference. I've figured out that the biggest issue I am facing, is my feeling that when I stop working I will be irrelevant, that I won't find meaning and purpose and that if I am not "producing", I won't matter. It's not logical, I know, since I have a wonderful family and dear friends who mean everything to me and I know I am important to them.

 

I was talking about this with a friend today, and he said that my thinking of myself as irrelevant is just an attitude. He is so right. I can adjust an attitude and I can choose to frame my relevance in any way I choose. If I take a negative view of my life changes, they will feel negative to me. If I frame things in a positive way I will have a more optimistic view of my decisions. Every person who has changed the direction of their life has faced the same issues I am facing today. I look around and I see that people in all kinds of life circumstance are doing just fine and I will be fine, too. Change isn't always easy but in the end, change isn't a good thing or a bad thing, it's just change. I am at the point in my life where I feel good about my accomplishments and whatever happens I know I have done my best and I have been there to assist and support others along the way. I hope the world is a bit of a better place because I've made my contribution. At the end of the day, I can choose to be at peace with my choices and believe that I will find meaning and relevance in my new life, just as many others have done before me. I am not ready to make a decision about my work, but I am ready to keep a positive attitude as I do my considering.

Day 327 - I Need You and You Need Me

When I was a kid I used to think that when I grew up things would be much easier because I would be in charge of my own life and people couldn't boss me around or tell me what to do. Ha! What an illusion that was. Although it's true that I don't have a lot of people telling me what to do, life's circumstances sure do dictate what I am going to have to deal with. I may not choose my circumstance, but I do have the choice to deal with my experiences in my own way. Each of us has our own "go to" strategy that we use to cope with the challenges that get thrown into our paths. Some people like to withdraw and ponder things before they are willing to share or to even face what they have to deal with. Other people need to talk things through with as many people as will listen until they hear themselves voicing their next steps. Still others have a way of processing a situation that is a balance of both. I'm a talker.

Whether we like to talk about what we're dealing with, or not, it's important that we are able to tap into a support system that allows us to be real about where we are. If a friend only wants to hear good and happy things it means that we don't get to talk about the difficulties we are experiencing. It certainly isn't helpful to only focus on the negative, but if things are really bad, we need someone to listen and to help us to cope with our experience. If things are so bad that it's too much for our friends or family, it may be time to seek out other kinds of support from professionals who know how to guide us out of our difficulties. On the other hand, a negative friend who doesn't share our hope or optimism can make us feel discouraged and hopeless. Negative energy is contagious so it's important to be around people with a positive an upbeat attitude so that we can maintain that in ourselves. 

Part of having friends is sharing the triumphs and tribulations in their lives as well as sharing our own. Our relationships become rich and deep with this sharing and as we live through life's events we develop intimacy and trust. One of the challenges in living with a chronic medical condition is that it isn't easy to be there for others. The amount of emotional energy it takes to be a caring participant in a friendship can be especially challenging for folks who have limited energy and are fighting to cope and to stay positive about their own experience. When people I care for are celebrating or having a tough time, I want to be there for them in as meaningful way as they have been there for me. Our friendships need the balance of us being there for each other. It is a reality that life is never simple and it certainly isn't easy the way we may have thought about it as kids. But when we have friends to share the load, life gets just a little bit easier.

Day 326 - Finding Plenty of Nothing to Do

When I was a kid, there wasn't much that was much more exciting than the end of the school year and the promise of an endless summer. There was so much to do back then and I was part of the generation that was told to go outside and play if the weather was nice. We only came back in for meals and if I went back into the house I was asked what I wanted and why wasn't I playing outside, We had a playground down the street and I spent many happy hours there. At home we played board games, cards, swam in the pool in the backyard and had plenty of time with friends. What could be better? Well, by August, things started to get a bit routine and boredom set in. It seemed like there was nothing to do, but in reality there was plenty. I just didn't want to do what was available. I have a sister and a brother and my mother wasn't going to amuse us so I realized that it was up to us to figure out what to do to keep ourselves occupied. That's when the benefits of boredom surfaced.

As summer progressed, we kids had to come up with a plan, use our imagination, and depend on our inner resources and ability to make choices to alleviate our boredom. I think that the skills I developed on those long summer days have served me well and they certainly come in handy on long fibro days at home. I am comfortable being by myself and if I can spend a day outside, in one way or another, I am a happy person. I developed a love of reading as a kid and I made regular visits to the library. By the time I was ten or so, I was walking to our local library with my sister or a friend and I hungrily devoured the books I brought home. I loved to make things and there was a spot on the side of the house that was shaded in the afternoon and it was a great spot to put down a blanket and do little projects, play games or read. I found things to do when I had to.

Boredom can be a stressor and I certainly don't need any more of those. But I have to say that my childhood summers with plenty of unstructured time, prepared me to trust my inner resources and to develop lots of interests. So, it isn't often that I become bored, but it does happen. There are days that I don't have much energy for searching out things to keep my mind occupied and there are certainly days that have that end of summer feel when there is "nothing to do". But just like when I was a kid, I can come up with a plan and find a way to use my resources to create some interest. So, on a day like today, I read a while, watched a bit of TV, visited at the nursing home, and sat outside in the back yard, enjoying the summer day. The summer goes by so fast that I don't want to miss an opportunity to enjoy it. I didn't do anything particularly exciting, but my mind was active and I felt satisfied with having spent a summer day without feeling bored at all.

Day 325 - Can't Get Mistakes Out of My Head

I have great admiration for people who can let things go. I'm pretty good with most things, but if it appears that I have hurt someone's feelings, I just play the situation over and over in my mind - and I am not easy on myself. A few days ago I said something that was taken as an unjustified criticism. After a brief discussion and apologies on both sides the next day, the situation was over with, but not in my mind. Ever since the exchange I have felt guilty, remorseful and even a bit confused because it wasn't my intent to be critical. But what I know is that it doesn't matter what I think, it matters that feelings were hurt and I wanted to make things right again. Even with hugs all around and the assurance that I will work to do better in the future, I just can't get my mistake out of my head.

Stress isn't good for me and I know that worrying and persevering over my shortcomings doesn't help. I'm not a bad person and I'm not a saint either. I am probably no different than many people who muddle through with good intentions and find that their intentions don't matter as much as what is perceived by others. When I find myself in a position where I have made a mistake I add more stress to an already crummy situation by not being able to just let it go. I can remember most of my mistakes. When I know I've messed up it gets burned into my brain and I can muster up the feelings of embarrassment and disappointment in myself as if it had just happened. Carrying that kind of stress can't be a good thing, and even after having lots of practice at mistakes over many decades, I am still not very good at being able to lighten up and let things go.

Wellness happens on many levels and the ability to be kind to myself and to acknowledge that I am okay even though I am clearly imperfect, is still a tough lesson for me. Today I met a young woman whose mom has fibro, she immediately began to give me suggestions for managing my own fibro experience. For a moment I was annoyed that yet another person was going to give me medical advice, but then I realized that she was just trying to be helpful and I could let it go. From being on the receiving end of unnecessary advice, in that situation, I could put myself in the place of the person who thought I was being critical by giving a suggestion. The best I can do now is to learn from my experience and plan to do better next time. I can be sensitive to another person when making a suggestion and I can be kinder to myself when I miss the mark. 

Day 324 – Fibro Tags Along on My Holiday Weekend

There is something wonderful about being able to participate in the joys of summer. This past week has been a mixture of good days and bad, but enough of the good ones to allow me to have a great time. I am almost to the point that I would rather just have an all out bad day after a few good days of full functioning, than a bunch of days where I am half in and half out of my day. Even on my good days I continue to try to pace myself so I can sustain my energy through whatever I'm doing, but I do know that if I play, I will pay. Seems there is no way around that, Each day in the midst of my holiday weekend celebration I have been aware of how I am feeling and doing little things that others may not notice to keep me feeling okay. I do frequent breaks and change my activity from busy to calm and back again. I am religious about taking my meds and I am getting at least eight hours sleep each night.

My kind of fun doesn't take an enormous amount of energy anyway, so I can have a pretty good time at my own pace. I don't jog or go to the gym, but I find that I can burn up a good amount of emotional energy. When it comes to being with the kids I have a hard time holding back and they have the energy of a small army. Even with them, I find I can play for a while, but then I have to shift gears and collect myself. We all went on an outing to the water park. Instead of even attempting to walk through the park to watch them play, I opted to go into town and visit a shop or two and then sit by the lake sipping a cup of coffee and watching the boats go by. When they stopped for ice cream I opted out on that too because I knew the crash after a jolt of sugar wouldn't be good way to spend the late afternoon.

Everything I do takes energy so when I am at the cabin I am willing to let some things go to make room for others. My hubby is great about cleaning up the kitchen after meals and he isn't shy about getting himself something to eat if I am napping and the kids were great about sharing meal prep, too. The dog loves to walk in the woods so my hubby takes care him and I get to relax and have my fun while they do their hiking thing. We have things pretty well worked out and my hubby knows that if I spend my time dusting and cleaning and preparing all of the meals, I won't have any energy left for the good stuff, so we stick to more casual housekeeping. Even with my effort to pace myself, today wasn't much of a day. The weather was perfect, but I just felt crummy and so instead of being outside I read and napped. I did get down to the dock for a little while to throw a stick in the water for the dog to retrieve, but that's about it. Tomorrow will be a push to get packed up, get the house straightened out and do the drive back home. But every minute has been worth it. Time with family is precious and there isn't a better way for me to spend my energy.

Day 323 - My Fibro Days - Fickle as the Weather

Today's weather reminds me of a typical fibro day. When I woke up it was pouring rain and I thought the day was lost because the storm was so strong and more storms were predicted for the day. Of course we changed our plans and decided to go for a drive because with the rain and clouds it wouldn't be much of an outside day. Well, after the kids left, we got ourselves cleaned up and headed out for a long drive. We knew where we intended to go but just one wrong turn put us in a great big circle and we wound up exactly where we weren't heading. After a change in plans we set a new destination and headed in another direction.

My fibro days can be pretty much like that. I start slow and on a really bad morning I figure the day is a washout. That's just what I thought about today's weather. If there is a morning that I can finally get going and I feel like I have some energy, I will set my plans for the day. On many days though, I have to adjust my plans again, because the energy I thought I had wasn't there after all. But then there are days that turn out like today – after a slow start the weather cleared, the sun came out and it was perfect. I can have a really bad start to my day and the day can wind up being perfectly wonderful with me feeling just fine. I never know.

The end of today was better than the beginning. I am grateful for the amount of energy I had to make an okay day into a great one. As I look out into the sky I see an amazingly beautiful sunset. The day has finished with a display worthy of my taking notice. I am doing the same for my fibro day. My fibro really is just like the weather. If I don't like the way I'm feeling now, who knows, in a little while I could be feeling much better. But sadly, the reverse is true as well. Just like a sunny day can have an unexpected thunder storm roll in, my good day can go sour without much warning. I have learned to take it all in stride. It all just comes and goes and my responsibility is to be able to adapt to the changes.

Day 322 - A Hoilday Weekend Crash - Some Celebration

There are many times I find myself being annoyed by the impact of fibro and fatigue on my life so I guess I shouldn't be surprised when every now and then someone in my family gets annoyed with it, too. I got a glimpse of that today when I had to spend the whole day in bed instead of having a fun time on a family outing. The past couple of days I tried hard to pace myself, but I had a sneaking suspicion that it was going to catch up with me and it did. I tried to get up this morning but I wasn't able to stay vertical for more than an hour or so and then it was back to bed for me. The rest of the family went about their business, but by the end of the day it was clear that my presence was missed, and not in a good way. My help was needed and I wasn't there to offer it. I felt bad, but not guilty. Sleeping wasn't an option or an indulgence – it was a necessity.

I finally dragged myself out of bed at about four in the afternoon and I had half a migraine cooking. I took my meds, but the headache just didn't want to go away. I tried to go about the rest of my day and ignore it, but it felt like a hangover and I just wasn't myself. I slowly started coming back to my old self by the time my daughter and her family rolled in. When I am around my grandkids I don't want them to see me as being sick. I have explained to them that I sometimes need extra rest, but they are little and any more of an explanation just wouldn't make sense. If I am in the room, they want to engage me in what they are doing and I am happy to comply. I sit when I can and try to do things that don't tax my energy too much, but time and again I find myself overextending because I am having such a good time with the little ones. It is really important to me to be a good gramma and fibro or not, that's what I intend to be.

I love holiday weekends because they offer an opportunity to kick back in a different kind of way. There are traditions to look forward to and opportunities for get-togethers. With each passing year I can see that my full participation isn't always possible and once again, I have to think about the adjustments I can make so that I can make the most of what's going on. One thing about getting together means that everyone chips in and carries their weight. I do what I can in that regard as well. Family members are good at pitching in and when each of us does a little we can accomplish a lot. The weekend is half over and I made it through with just one crash. We have two more days together so I want to get a good night's sleep tonight and wake up more refreshed and ready to take on a new day.

Day 321 - My Heart Belongs to the Mountains

My daughter asked me how I got to love being in the mountains so much. I don't think it's an easy answer but I do know I started out my young adult life as a “beach” person. From the time I had my first car I went “dpwn the shore” as we Jerseyans call it. I loved the salt air, the wide stretches of white sand and the fact that I always wound up hanging out with great friends while I was down there. I went to the beach at every opportunity – on dates, by myself in the winter and the summer. It didn't matter time of day or time of year I would go to the ocean. If the weather was too severe for me to brave the biting wind and the wet spray, I could just sit in my car and watch the waves rolling in. As I got into my adult years I spent a little less time at the beach but I still loved it and when it came time to decide about a second home I had to consider which was best for me – the mountains or the sea.

In order to help me make my decision, one year I split my vacation between the ocean and the Adirondack Mountains in New York State. I had been to the Adirondacks a number of times and I fell in love with the high peaks, the clear blue lakes and the way the area had avoided most of the trappings of modern life. The county where I finally built my little cabin doesn't have a single traffic light and our cabin doesn't have internet access or a television. It's a place to go where I can unplug and unwind. I can walk down the path to our little lake and watch the loons paddle by with an occasional display of their magnificent wingspread. I can hear the beavers slapping the water before I finally see the top of their heads out of the water just enough for them to see and breath, or I can count the trees they have taken down to add branches to their den at the edge of the lake that we share. The stars blanket the sky and trim the trees with sparkling little lights and the moon hangs low and full and because it's so dark, it casts moon shadows that seem like I am in the middle of the day. Day or night, there is plenty to do in the mountains and I like that my choices are simple and uncomplicated.

In the end I chose the mountains because at this stage in my life I love the solitude and the idea that I am going back to a simpler time. I don't need all the bells and whistles of suburban life all the time. I certainly appreciate technology and all of the conveniences I experience at home. But when I get up in the hills I take a deep breath and the air is fresh and clean and smells of pine. We use a kayak or canoe on the water and don't feel the need to go fast or even to use a motor. It's nice to meander. I love when family and friends visit and we sit out on the porch and just relax together. The phone doesn't ring, the television isn't playing in the background and nobody has their nose buried in a screen. A water fight, throwing a stick for the dog to retrieve in the lake, cooking over the fire or taking the boats out for a paddle are the big excitement for the day. I still love the beach and I have a wobnderful time when I vacation there for a bit each summer. But, when it comes right down to it, my heart belongs to the mountains.