Day 254 - This, or Something Better

Something good always, and I do mean always, comes from the toughest times. Here I am in the middle of a health funk and I have to say that I can easily identify lots of good things that have come out of this. I have met people I like and enjoy that I would not have met were it not for the fibro connection, I have become a disciplined writer - I have written my thoughts every single day for well over 250 days - an accomplishment I would not have expected. And something I have tried before, but without this kind of result. I have identified health issues that had gone undiagnosed that were doing me harm and now I am back on track. I have developed new hobbies that match my easier lifestyle and I have embraced a slower and easier pace. I set priorities that do not include wasted time or energy. When I do something, it gets my full attention because I value my effort even more than I used to. Those things are welcomed changes, even though they are not what I had planned for. When something is being taken from me, and I am afraid, my prayer has always been, This, Dear God, or something, better.

 

When something is taken away, it is not necessarily replaced immediately by something of equal value. In some instances something of greater value appears and other times what has been replaced grows in value over time and can be appreciated in maybe a bit of a different way. We can look back and see that at first it wasn't viewed as something that would enrich or fill our lives, but it took some time for its real value to be revealed. When I am grieving what I have lost, it is because the loss has created a void. There is nothing where something good used to reside. My life is out of balance and I don't see how it can be righted again. But it gets there, minute by minute, day by day, week by week.....I just keep putting one foot in front of the next and I keep my eyes and heart open, seeking new possibilities. My job in this is to remain optimistic and willing to do things differently and to learn new ways to participate fully in my own life.

 

I feel a tenderness for my past, and for the things that used to fill my life that are not there any more. Many of those things faded away, not because of an illness or some dramatic incident - but because time has a way of reshaping our lives and moving us gently from one phase to the next. I used to do so many things that are no longer part of my life - but I know that I can bring parts of them back to me if I am patient and willing to see things in a different way. I may not be able to hike in the woods, but I can take a walk. I may not be able to work an eight hour day, but I can do six. I might not cook dinner - but I can enjoy the meal prepared by someone else. I may not be able to read as fast as I used to - but I can still enjoy a good book in larger print and at a slower pace. I can still love as much as I always have and I can still stay connected to people I care for. My life is always experiencing something coming in and something going out. I can appreciate the shift and focus on what's good - that's what makes a bad situation grow into a new possibility.

Day 253 - Unpredictable as a Spring Day - But Heading in the Right Direction

In some ways, living with a chronic condition is just like spring. From day to day I just never know what I am going to get. Yesterday was sunny, on the warm side with a bit of a breeze. It was perfect weather to take a long walk and enjoy the trees in full bloom and the spring flowers poking out of the ground - so I did. It was wonderful to be outside. We walked in Central Park and I have never seen it before in its spring glory. Lots of other people were outside enjoying the warmth of spring and a hint of what's to come. it felt energizing and it seemed to me that people kept their heads a little higher, they smiled a little quicker and they walked with a bit more pep in their step. It was just about a perfect day. Then overnight, it seemed that the weather was heading more toward winter then summer. It was a complete turn-around and the temperature dropped by twenty degrees, the sun didn't shine and I certainly didn't go walking.

 

A perfect spring day is a real tease, especially when it is followed by a raw, nasty day.. We all like that time of year when everything seems a bit more relaxed and the days are long and the nights are sweet. It smells good, it looks pretty and being outside in the sun feels nourishing, like food for the soul. In contrast, winter makes me want to hunker down and pull back in. When it is bitter cold, being outside is an exercise in forbearance and not something I seek out. This in-between season give me a bit of both and I begin to take notice about how much the weather impacts my symptoms, my mood and my overall sense of well-being. I like the movement toward the warmer weather - my body doesn't feel so stressed and I love the longer days and the warm sunshine.(I certainly like heading toward summer, but I don't like the extremes of summer any more than I do the extremes of winter). So, I guess I'm sort of a transition kind of person in that regard.

 

It seems clear to me that the ups and downs of fibro are like the inconsistent spring days. Just like a spring day can go from sunny to rainy to chilly to warm all in the space of twenty four hours, my symptoms do the same. I go from energized to tired, to having pain, back to energized then flat out on the couch in the same amount of time it takes a spring day to run its full cycle. Some days I go out, thinking I'm prepared for the weather with what I'm wearing, but then I find out my jacket is too light to keep me warm or the sweater I chose makes me feel way too hot. I just can't seem to get it right with any degree of consistency. Same is true for my fibro and fatigue. I don't seem to be able to predict or prepare for the kind of day I'm going to have. I suppose I shouldn't  continue to be surprised by ups or downs I didn't expect, because that is the true nature of this condition. Aside from knowing what will definitely put me into a crash, fibro is truly unpredictable. But, if I can see it being like a day in spring, unpredictable but heading in the right direction I might be better at living with the uncertainly. 

Day 252 - Ups, Downs, Pacing and Doing

Central Park in NYC is absolutely beautiful this time of year. My hubby came with me today when I went into the city for my Lady Doc appointment. Afterward we took a walk over to the park and enjoyed a leisurely stroll. The sun was shining, the trees and flowers were in full bloom and we were among probably thousands of people sharing the experience. I felt energized and filled with life as we followed paths that led to ponds, playgrounds, horse-drawn carriages and lots of other beautiful park views. I loved the people-watching, especially the little kids who jumped around with excitement at being outside on one of the nicest days so far this year. My enjoyment was in stark contrast to the start of my day.

 

My morning was rough and it was one of those days I would have preferred to just plop on the couch until the fog lifted. The first few hours were a struggle but I had to keep pushing through to leave for my train at ten. I have to say I am getting a bit tired of this routine. I feel like my day begins three to four hours after I get out of bed. No matter what I do, the beginning of the day is miserable. And because my body feels like it is swimming through sludge, my mood usually matches. I didn't used to be this way. I remember my first teaching job there was a sixth grade teacher who told me to stop saying good morning to him because he didn't feel all peppy and chipper. I really couldn't understand not being in a great mood at the start of the day - after all it is a new day that we get to anticipate and watch unfold. Now, I get it . I really, really get it. Sometimes a person really does have to walk in an other's shoes to get the message.

 

I am happy for whatever part of my day that is good. Even on my worst days, I usually have at least a few hours that aren't a total loss. The ups and downs are the hardest part of this condition, and it goes without saying the downs are the hardest to cope with. This morning I was struggling with fatigue and a miserable migraine. but by mid-afternoon I was taking a walk in the park - go figure. After our walk I did feel tired so we hopped into a cab and then by the time we got to the train station I got my second wind. There was no cab at the station back at home so my hubby decided to walk home and bring the car back for me. I made it as far as the local library and waited for him there. Another down, and then back up again, but once we walked in the door I was pretty much done. I think I paced myself well today. I didn't give in to my bad morning and I got to have a sweet afternoon in the city. I felt like I was riding a series of waves, I didn't wipe out and I got to enjoy a beautiful spring day in the park!  

Day 251 - The Good Samaritan and the Cop at My Door

I rarely hear my dog bark the way he did tonight. It was as if he knew he had to protect us from someone or something. When my hubby checked out the front door he saw a police car parked in front of the house. He closed the door and the dog settled, but I didn't. I wanted to know why the car was out there so I stood at the front door with my dog and watched as the officer sat in his car with the interior light on, taking notes. I was starting to get really curious, but I also felt a little strange standing in the doorway, monitoring a police officers behavior. As I was about to close the door I noticed the light inside the vehicle went out, and the officer climbed out of his vehicle. He was coming to my house! Gulp. I know a policeman is supposed to be our friend, but I couldn't think of a single good reason for him to be appearing at nine o'clock at night.

I waited for the officer to come to the door. He asked if I was Diana R and asked my hubby's name. I confirmed who I was and waited for what was coming next. He said there was a problem with a check. Hmmm. I don't write many checks so this was a mystery. I invited him in. Seems I had paid a person I hired to do some work in my home and the check wound up in a parking lot ten miles from my house. A good samaritan found it and turned it into the police. Now, that's my kind of visit from a police officer. He was very courteous and called the police station in the other town and we arranged to pick up the check. I called the individual who lost the check and the person was totally unaware it had been dropped. We both commented about our happy ending and shared our appreciation for the person who went out of their way to be honest and helpful.

Good things happen all the time and it is really important to take note. It seems effortless to list all the bad stuff going on, to complain about what isn't working and to lose sight of what's right and good and wonderful each day. Recently I've been heading toward a real slump - grumpy, negative, discouraged, and pretty much unpleasant to be around. Not feeling well doesn't do much for my sunny disposition. I have had so many bad weekends, I am far behind around the house and in being caught up with a bunch of responsibilities. I feel stressed and afraid I will never catch up. Even though I don't like to ask for it, I need help. I had some help today and I paid for it willingly and thankfully. Then tonight, circumstances came together to make sure the money I paid out for the help I desperately needed, was put back in the right hands. Everyone benefited. Me, because my work got done, the workers because they got paid for a day's work, and some good-hearted, honest and responsible person got to do a good deed and feel good about that. That one small act set a little piece of my world right.

Day 250 - Healing From the Inside Out and the Outside In

Day 250 - Healing From the Inside Out and the Outside In

I sat with a woman this morning who told me she had recently lost over fifty pounds. It was clear to me that she was very proud of her accomplishment, as well she should be. What interests me is that she didn't talk about her weight loss as a body thing - it was more about her motivation, her decision to make better choices and her determination. Another person I spoke with is recovering from surgery and is wanting to gain back a full range of motion and function. Yet another is a gentleman too young to be recovering from a stroke, and here I am dealing with my stuff. As I think back on my conversation with each of those individuals, I began to think about the depth of challenge we all faced. We each had lots of feelings about what we were contending with, and each of us had to dig deep and find extra strength and focus to work our way through our difficulty.  Through our sharing it became clear that the symptoms expressing in our bodies were triggering emotional and spiritual challenges as well They are connected.

 

I do believe that our bodies express that we hold inside. What needs to be healed on the inside gets expressed outwardly in our bodies. I'm not sure that there is a one-to-one correlation that equates a specific emotion to a specific illnesses or condition. What I have found is that there is a dialogue I can have within my self to uncover the aspects of my higher self that need nurturing, healing or transformation. Why do my neck and shoulders hurt some days and my feet on other days? Maybe my head is filled with too many troubling thoughts and it just gets "too heavy" so my poor neck has trouble holding it up. Why does stress relief relieve my neck pain? Why do we say a difficult situation or person is a pain in the neck? Emotions cause body pain? Maybe my neck and shoulders hurt when I am shouldering" too much responsibility. My spiritual lesson is to learn how to let some things go and get them off my shoulders instead of letting them weigh me down and hurt me.  Maybe my feet hurt when I "can't stand" something that is going on in my life. When my feet hurt I can't stand.

 

My first line of strategy in dealing with my fibro symptoms has been with with meds and treatments, but this journey of healing has been as much an inside job as it has been a medical recovery. I have spent lots of time contemplating the meaning of my journey, knowing that I can never know for sure why fibro chose me. What were the conditions in my life that made me ripe pickings for a nasty disorder that turned my life upside down? Maybe I needed to slow down, become less self-critical, change my work focus, pull back from some relationships that were put of balance and take time to really care for my health. Maybe all of the stress I was managing needed to be lifted so that I could re-focus and get back on track. Maybe, deep in my soul, I didn't feel like I could do all of this without something dramatic intervening on my behalf. I don't know. Maybe fibro is my greatest teacher. My Lady Doc can only do so much for me. I am the one who has to work on the emotional and spiritual lessons this condition brings up in me. I can use this condition to examine the issues that arise within me and in the process, also learn to be more self-accepting, and as nurturing with myself, as I would be if I were tending to someone else.

Day 249 - Courage, Caring, Connection and Meaning

My daughter with Cornelia de Lange Syndrome is an incredible teacher. She has taught me what it means to be courageous and open hearted. Imagine how much courage it takes to live every single day of your life completely reliant on others for your very survival. My daughter trusts that her needs will be met, her questions answered, and she expects that she will be loved. As a matter of fact, I think she gets a little surprised when someone doesn't take care of what she needs, because the people in her life have been trustworthy - and I'm not just talking about her family. She is loved and liked and tended to and made to feel that she is capable and wonderful - because she is. In her own way she makes a contribution to the soul growth of all of us - we learn patience, tenderness, compassion, and a host of other skills just in taking care of her social, emotional and medical needs. She lives a life of caring and demonstrates a connection to others that is free, open and trusting. My daughter never meets a stranger.

 

Just like my daughter, I want to focus on a life with meaning and connection.  It doesn't matter that I spend a good part of my life on the couch and out of commission, I want to be a source of joy, love, inspiration, comfort, compassion, connection and healing. I want my words to be a balm for another's pain or a source of caring and friendship. I want my experiences to be a reminder that we all have our journey and that we are in this together. I want to be a soft place to land for someone who needs a willing listener.  When someone needs to give voice to their joy, sorrow, pain or confusion, I want to be on the receiving end, listening and caring. I want to live a life of meaning in my family, my work, my community and through my choices. I know that my experiences are not unique, but I also know that we are all connected in deep and mysterious ways and I want to live that mystery and watch it unfold before me. I know that there are others who suffer far more than I do and our shared experience can lift us up from our despair into healing. I want my life to be about the rising above and the moving through - not about the being stuck or feeling hopeless. I want to move forward with faith and confidence.

 

Each of us brings gifts that no other shares - my daughter does, I do and you do. We are unique and brilliant beings who are here together to live our lives in fullness and abundance. Where there is lack, we can shine the light of love and there will be prosperity. Where there is pain, we can respond with compassion and ease  suffering. Where there is joy we can multiply the happiness by sharing and celebrating it with each other. Even in the midst of pain and challenge there is enormous good in our lives. The negatives can easily overtake what's positive if we let our thinking shift in that direction. Sometimes our unhappiness, pain and frustration blind us to our own highest good. I wonder sometimes where will I possibly get the energy to do all that I wish to do that gives my life meaning. What I realize every time is that I need to redefine what I want to do and then find a way to do my best. It is what my daughter does every single day and if she has the courage then I can ask no less of myself.  

Day 248 - I Get By With a Little Help....

Today was a long travel day. We left Philadelphia and headed north to bring my daughter back home after our day of doctor visits. We had to go through Philadelphia on our way north and we have lovely friends there who very graciously invited us for lunch. We stopped for a couple of hours and it was delightful. My friend made a yummy lunch that we ate outside on her patio and we spent our time together relaxed and happy. My daughter did well and felt comfortable even though this was the first time she met these particular friends. That stop made a very difficult day much easier to manage. We still had to drive over two and a half hours to my daughter's house and then an hour and forty-five minutes to home. I get by with a little help from my friends and that stop was a huge help.

Friends often ask what they can do to help when they know about my struggles. This weekend my focus was on my daughter, but that doesn't mean I wasn't struggling with my own health issues at the same time. It was enormously difficult to take care of myself while I was tending to her needs. I even forgot to take my meds yesterday. I set my pills, poured a glass of water then my daughter needed something, I walked away then totally forgot to take the pills. I was beyond exhausted trying to pack for our trip and both mornings at the hotel  I was pushing myself beyond my tolerance level to get us all out the door. While I was standing and waiting for the elevator to take us to the parking garage I could barely stand up and was leaning on the luggage cart to hold myself up I felt so weak and sick. At the same time my was daughter was spilling her hot chocolate all over herself and getting agitated with my attempts to stop the spillage. We both lost our patience with each other and it wasn't a shining moment for either of us, but thankfully, the moment passed quickly.

There are times when I just run out of give. I have nothing left of myself and in that condition it is impossible to tend to anyone else - even when it's my own daughter who has special needs. I don't feel like mother of the year in those moments, but I also recognize that I am not acting out of a lack of caring or concern, but out of my lack of wellness. You can't get blood out of a stone and you can't get energy out of me when I am depleted. Thank goodness for my hubby and for the people who helped manage my daughter when she was seeing her specialists. My friends who invited us for lunch were life savers, and they probably just saw our visit as something we enjoyed. We enjoyed it, for sure, but I will be certain to let them know that their hospitality made a very rough day manageable and a lot more fun. I need my friends, not to do things for me, but to do things with me. This was a great example of a great friend coming through with precisely what I needed at exactly the right time.