Day 247 - Great Doctors VS Good Ones

I spent the good part of today with a group of doctors who donated their time to work with young adults who have Cornelia deLange Syndrome. I mention the name of my daughter's condition because it is not well-known and like fibro, there needs to be much more research so the symptoms can be treated and managed more effectively than they are today. When my daughter was born thirty-two years ago, there was almost nothing known about her diagnosed syndrome because it was so rare. Even though I had very nice doctors, they really couldn't help me to manage the multiple challenges we faced. We learned together. I had genetic specialists in Philadelphia that I consulted over the years and through their effort and dedication, they have identified the cause of CdLS. They never stopped for a moment working and researching to find out as much as possible about all aspects of this disorder.  I also had the benefit of a newly formed parent support group that I am still active with today and I relied on that support they way I rely on my fibro community.

There are doctors out there who are incredibly amazing and not at all ego-driven. When I am in their presence I can feel their compassion, curiosity and expertise as they ask probing questions and give their well-considered responses. Today my daughter met with eleven doctors and ten of them were fabulous. Number eleven was a bit of a disappointment and what's interesting to me is that my hubby had the exact same take on him - and that was before he, as an internist, declared to me that there was no such thing as fibromyalgia and it was the same thing as chronic fatigue and who wouldn't be tired if they were in pain. I was there for my daughter, this was not about me. We were exploring reasons why she fatigues so easily, why she is stiff in the mornings and why she has so much pain. I just briefly mentioned my diagnosis and that man just cut me off at the knees. He wasn't even nice about it - he was snippy and curt. I was there to find out as much as I could learn about how best to manage my daughter's symptoms. Other doctors asked multiple questions about family medical history. That's what great doctor's do.

So what makes the difference between a good doctor and a great one in my mind? What I noticed today is every great doctor was a good listener. They each made eye contact as they spoke and they didn't talk down to us. They had a wide range of knowledge and expertise in their field and they were at ease when asked a question. They didn't appear to be defensive or all-knowing. They talked in terms of what might be happening and suggested strategies for testing and figuring it out. They looked to be clear and concise as they discussed symptoms and what they could mean. These great doctors recognized that they have more to learn and are very willing to confer with other doctors before drawing conclusions. A great doctor continues to learn, continues to dedicate him/herself to their profession and keeps the patient utmost in their mind. I was happy to be in the presence of great doctors today and I am enormously grateful that they were there to take care of my daughter.

Day 246 - And Then The Grumpies Set In

I wasn't a  very nice person this morning. I had to get up early to tend to my daughter who is home for the weekend. I have been questioning myself lately - kind of a soul-searching kind of thing, wondering if I am giving into this fibro thing too much and not asking more of myself on my off days. Today answered my question - I know that today I wasn't giving in - I was pushing. My hubby left early to take the dog to the kennel for the weekend so I was home alone with all of the challenges of having a daughter with multiple disabilities. She can't bathe herself, prepare her own meals, get herself dressed without some assistance and can't be left unsupervised for more than a few minutes at a time. When she is home I am on duty and there is no reprieve. We had to get out of the house fairly early and I had to do some packing - for her and for me. You would have thought someone had asked me to run a marathon or build a bridge - that's how much effort it took to get anything done.

There is a delicate balance between taking care of myself, pampering myself when I need to, and falling into self-indulgence. We all have lazy days and they are an important part of a balanced life. Taking time to just sit and stare at the trees and the squirrels is very nurturing. Going for a massage is both therapeutic and an indulgence and putting off a chore isn't the end of the world I don't call in sick to work very often. If I've made the commitment to go in, I go. I suck it up and let the energy of the day get me through. Mornings aren't a very good gauge of what my day is going to be like - especially the first hour or so. I've questioned whether I have just assumed it was going to be a rough day and settled in on the couch without giving the day a fair shot. Usually on those days just getting a shower and putting myself together is enough of a test to gauge how I'm feeling. If it's a good day I just keep on going, on a bad day I have to stop and rest a while before taking on the next task. Today I tested, and knew I couldn't keep gong, but I had no choice - that's when the grumpies start.

When I am not feeling well and I am being pushed, I lose all patience with myself, others and with anything else that crosses my path. I have to just zip my lip or I will say things I don't want to say. When my hubby got home he was fair game - and that's not fair. I told him I had no ability to be reasonable and to just ignore  my grumblings. When I'm feeling that exhausted, stressed and grumpy he can't even breathe right. He was smart and just went into the other room. Luckily my daughter felt sleepy and headed back to bed for a longer sleep. Without that break I don't know how I would have made it through the morning. I try to keep my patience with her.  I lay low until my mood shifts or I get some energy back. Within just thirty minutes I went from sleepy to grumpy, to weepy and I'm sure if I kept track, I could have represented all seven dwarfs. I get so peeved at feeling lousy that I my anger gets all mixed into my feeling ill. I checked in with my hubby and he doesn't think I give into my bad days. I'm the only one who really knows and I am pretty sure I'm doing the best I can without indulging myself.

Day 245 - Fibro is Not the Most Important Thing

We were a pretty sorry sight here this evening. My hubby is recovering from an upper respiratory thing and was nodding off, I drove three and a half hours to bring my daughter home and was totally spent and my daughter was just worn out, too and we were leaning against each other, both barely able to sit up. She went to bed by eight, my hubby napped in the chair and I just stared straight ahead at the TV, willing myself to stay awake until she finally got settled and I could get my writing finished. I am in one of those tired moods where I don't want to talk. I don't want to do anything - I just want to crawl into bed and sleep the night away. My hubby and my  daughter feel the same way and it is good to be just regular tired and not have every uncomfortable feeling or symptom relate back to fibro. It makes me feel very ordinary - and in this context, ordinary is a very good thing.

A friend's husband has a new diagnosis of something that is fairly common, isn't life threatening, but it is life-style threatening. His doctor's advice, in addition to some cutting edge treatment, is to just go about life without focusing on symptoms as much as possible, and put the ailment and its symptoms in the background. I like when doctors give that kind of advice, because I think its important to keep things in perspective. In regard to my own symptoms, I think I can do a pretty good of pushing things into the background, but there are other times when they are front and center and I can't imagine having the will to push them aside. I am better at it when I am out in public or engaged in an activity that completely captures my attention. When I am alone its a different story and I think the silence that surrounds me allows my fibro to have a bigger voice. Tonight I am tired because it was a tiring day. I feel exhausted and it's not about fibro.

It is tiring to be a parent, to have a job, run a household, to tend to extended family and to deal with the everyday details of life. It makes sense to be tired after a five hour trip that included driving, an annual meeting, packing a suitcase and stopping for a quick hello to my other daughter and her little ones. It's a very ordinary thing to feel sore after yard work, discouraged after a disappointing decision at work or in a slump when the sun doesn't shine. Everybody, every single day, deals with and manages an untold number of issues, problems, and circumstances. It is simply part of the human condition. We can feel tired after a party, a wedding or a great vacation. We can be sore from dancing or doing a much anticipated project. Those are all markers of an ordinary life lived in an extraordinary way. Sometimes we're sick and sometimes we're well. Some days we hurt in our bones and other days its our hearts that ache. But we go on because we have a jest for life. And, if fibro is part of it, that's just how it is . But it doesn't have to be the most important part.

Day 244 - Fibro Hasn't Gotten the Best of Me

Today I had a good day from start to finish. My energy was good, I felt sharp, I got in a good day's work and even had time to pop into a shop on the way home from work and pick up a dress for an upcoming event. This is just two days after a four day slump. Go figure. I am totally blown away by the inconsistency of this condition. I can go from a discouraged lump on the couch to an optimistic, productive, energized and active woman in the span of twenty-four hours. I can go from insomnia to a solid night's sleep, from a migraine to a clear head, from fatigued to feeling fantastic and then back again. How the heck am I supposed to plan my life when I never know what the next hour will bring?

 

I was thinking on my ride home today if there was some way I could figure out how to create a good day. Is it because I get up and shower immediately? Hmmm, no, There are days I go from the shower to getting ready for the day, then right back to into bed, because the effort of getting ready wore me out. Should I go back to staying in bed for thirty minutes after I wake up so I get my body in gear before I jump out of bed? Well, I'm giving it about fifteen minutes these days and I could try the thirty minutes again, but it didn't really make much of a difference in my day when I was doing half an hour. Does it matter what time I get into bed? Too early and I just lie there, waiting for sleep to come, but too late invites sleeplessness. When I stick to a tighter schedule of when to go to bed and when to get up it has worked, but there are still those days when I am following my routine and it gets all screwed up anyway. Take my meds? I do that. Eat healthy foods - pretty much do that too, Reduce stress. Umm, maybe not as much as I could. I can't change my circumstance, but I do focus on keeping my head on straight - but some things just kind of gnaw at me anyway.

 

Maybe what it boils down to is that there really isn't any particular thing that is going to make this condition go away or be better day-to-day. There isn't anything I can do or think or feel or believe that will make my condition vanish. What I can do is to keep doing all of the little things I know to do, stay confident in my treatment plan, continue to learn and explore possibilities, take care of my emotional health as well as my physical health and pay attention to how I am feeling and just deal with it. I have to stick with what I know is true for me and to continue to understand that this is a complex situation with no easy or guaranteed resolution. In addition to my medical plan I need to keep the rest of my life simple and sweet. I need to sleep when I'm tired, eat when I'm hungry, laugh when I'm happy and cry when I'm not. I have to just keep putting one foot in front of the next and keep my chin up and stay optimistic. This condition may have taken some things away but is hasn't gotten the best of me and it never will. Never.

Day 243 - Sleepless Night - Lousy Day

Last night my dreams included a large cast of unhappy and stress producing characters. I kept waking up and couldn't quite put it all together, but it was not a peaceful or restful night's sleep. My sleep has been messed up again. If I don't sleep well, I don't function well for the next day or two. I have no idea what triggers my sleeplessness. I stay away from caffeine, especially after noon-time, I do go to bed at about the same time each night and I am up in the morning within an hour of the same time each day. But when I don't fall asleep until three in the morning, there isn't anything good that is going to happen the next day. There is no way I can function with any degree of normalcy once I pull myself out of bed after a sleepless night.

 

There are lots of us who know about sleepless nights - college studetns, new moms, individuals under stress, menopausal women, folks with depression and certainly those of us with fibromyalgia. For most of my life I have slept like a rock and my sleep problems had to do with my tremendous need for long hours of sleep rather than sleeplessness. For the past ten years, I have had some serious sleep problems and at one point I was chronically sleep deprived and it wreaked havoc with my body. Since I started with my Lady Doc last August, my sleep has been much less of an issue. I do take meds at night - but not sleeping pills that knock me out and into oblivion. I tried those heavy duty sleep meds that are so beautifully advertised on television and I had an experience that was truly frightening. I don't want to get too personal, let it suffice to say that I appeared to be awake and I was up and functioning, but had absolutely no memory of it the next day. I could have driven my car or cooked or taken a walk in the middle of the night without any awareness because those drugs have a hypnotic effect. After that experience I swore I would never take a sleep med like that again. And I haven't. For months and months I have been sleeping well and I have to say it is a real luxury to sleep through the night. I want that back again.

 

I have learned in living with fibro, that symptoms come and go, with or without treatment. I might go a fairly long while experiencing pain and suddenly it just goes away. I have my good times and I have crashes. Those ups and downs are to be expected. My sleep issues seem to come and go as well. When I don't sleep, my fibro really kicks up and all kinds of symptoms are triggered. It makes it a lot harder to cope when I am not functioning because I didn't sleep well. Lack of sleep can cause memory problems, difficulty concentrating, it can impair decision-making, cause clumsiness, weight gain, impaired glucose tolerance and in the end you just feel lousy after a bad night's sleep. When I haven't slept well I have less patience, I  feel less motivated and certainly more tired. When I have one bad night after the next I just give up and spend the day in my jammies and try to get rested up enough that I can start to function again. So here I am facing another night. I am going to get into my most comfy PJs, take my supplements, play my sleep music on my iPod, think good thoughts and then just gently drift off to sleep....please. 

Day 242 - Today, Spring Took Good Care of Me

 Today was my first warm day on the new porch and it was yummy. I opened up the windows and pulled back the shades on the glass roof to block the strong sun and I basked in the warmth of our first real spring day. Today was the kind of day that reminds me of everything I love about this time of year. Bare feet, a tall, cool drink, a soft, warm breeze and time to enjoy it all. Typically, I feel my best late in the afternoon and in the early evening. My favorite time of day in the warm weather is late in the afternoon when the sun has dropped a bit and the major work of the day is behind me. So my best time and my favorite time come together in the spring. In the early evening I can enjoy taking time to sit and relax, eat outside on the porch, maybe read, have some conversation or take a slow stroll with my hubby. In contrast, in the winter my best time of day is dark outside and getting colder. Not the best combination for me.

Just one warm day is a tease. Tomorrow it is supposed to be cool and cloudy and then get a bit warmer at the end of the week. But still, it isn't winter any more and I think the worst of it is behind me. The way I usually get through something tough is to set my eyes on the goal and power on through. That's what it felt like this winter - I had my head down and I shouldered on. Granted, I did get some time away from the cold and that was a blessing, but once I got back into the cold it was right back to just hating the way the cold just sets in my bones. I never felt like my feet were warm and I dreaded going outside when the wind was blowing and the chill wrapped itself around me. I believe that part of the reason I don't do as well in the winter, aside from the cold temperature,  is because I need the sunshine and the short days seem to rob me of some of my energy.

I cannot control the weather and I am not in a position to move around to follow spring-like temperatures. I want to live close to my family, I am not ready to stop working and I don't want to move every time the seasons change. So what is left for me to do? Well, First up is an attitude adjustment - accept what I can't change and just get on with it. When it's winter I have to make my plans to minimize the negative impact of the cold and dark, and then just get on with my life. I wear clothing that keeps me as comfortable as I can be and I let fashion fly out the window when I need to. In the summer I don't deal with the heat and humidity any better than the cold, and in some ways it is even worse. I can add one more layer if I'm cold, but if I'm too hot, there isn't much more to do except choose to slow down, conserve my energy and stay comfortable. So, I guess what I like most about spring is that it is sweet and it treats me kindly. I don't need to strategize, I can be outside and just enjoy all the things about the season that nourish me.

Day 241 - Fibro is Not Progressive But I'm Feeling Progressively Worse

The first few years after I was diagnosed with fibro and fatigue I was divorced and living alone. I was having a rough time and as my condition continued to worsen, I was forced to take a six month leave of absence from my job. It was frightening to live alone and be so sick. There were days I just never lifted my head off my pillow and I didn't eat or drink anything all day long. Other days I perked up and was able to visit with a friend or spend time with my kids, who were no longer living at home. Week after week I wondered what would become of me. Would I be able to go back to work and support myself? How could I take care of my home alone? What would happen to my relationships when I couldn't be a full participant? Would I get better? I was terrible about asking for help and whenever anyone said they would do something for me I brushed the offer aside. That was probably a mistake. I did what I could do on my good days and saved the rest for another time.

The people closest to me were wonderful during that time and I shudder to think how I would have managed  without my daughter and my now-hubby. They seemed to know what I needed without my having to ask. It helped me to maintain just a little pride and to not feel so needy. My main goal for those six months was to get a handle on my health. I had been through a pretty rough time after my Dad passed away and thought that if I could drastically reduce my stress and spend some time focused on getting better I could turn things around. So during that six months I went to a local holistic health center. I started weekly physical therapy sessions as well as aqua therapy in a heated pool. I went for acupuncture every week, I took vitamins and supplements and Chinese herbs and I still I didn't get better. I went back to work rested, but I was still struggling.

What makes me very concerned is that I look back at that time, nine years ago, and I was doing better then, than I am right now. I think it was this time last year. or maybe the year before ( I can't remember) that I took six weeks off because I just couldn't push any more. Early spring seems to be my very worst time of year - I guess the stress of winter takes its toll. I'm hoping things will start to improve and everything I read suggests that fibro and fatigue are not progressive. But it sure feel like it is. I don't know why, I'm doing more for my health than I ever have, but I am just not functioning the way I used to be able to. Even when I was out on medical leave I wasn't as sick as I am now. As a matter of fact, until recently I rarely used the word sick to describe myself. That has changed and I am certain this is not an attitudinal shift. I am still positive and optimistic - I just feel crummy a good percentage of the time. I'm really tired of being sick and tired.