Truth, honesty and transparency are three words that probably bring quivers of fear to some. They're not for everyone, that's for sure. It takes courage, confidence and strength to live a life striving for all three. Some people either choose not to look at these aspects of themselves or they're just too busy with the day-to-day stresses to stop and consider what life would be like to embody these three powerful traits.
As we consider living a life through truth, we need to realize that everyone's truth can be different. There is no right or wrong, just perception. Each of us can be a part of the same event and have very different perceptions of the event. In actuality, each of us remember things differently and have a different truth of the event. Living our own truth and respecting other people's truths is important. It's nonjudgmental and supportive of each of our differences.
How many of us can say that we are honest with ourselves? How about the times when we know it will be disappointing or not so pretty? That's incredibly hard to do, but important to do never-the-less. If we can't be honest with ourselves, how can we grow and allow ourselves to be who we're meant to be? If I were unable to be honest with myself about being disappointed with how hard it is for me to let people in when I need it the most, I would never have an opportunity to learn how. I'm pretty sure I'm missing out on some incredible supports and connections that others are willing to make, but I'm scared. I'm human and it's one of my growing edges. I'm taking baby steps in the right directions and that's only because I'm able to be honest about this shortcoming.
Honesty extends outward as well. Being honest with the people around us and those we really care about can be heart-wrenching. I'm sure many of you have had something to say to a loved one, but you knew that the information would hurt or even devastate them. Do we gently and compassionately talk with them with honesty or do we do a little dance, pretending that we're protecting them. The dance, is really avoidance and cowardly. We need to consider that being honest will bring a deeper trust to the relationship. It has the great potential to build a stronger respect and it encourages the other person to be honest as well. Now, I'm not talking about opening our mouths and vomiting all over our friends. There should be some soul searching and good consideration around the significance of the information. Keep these three words in mind when deciding how and when to be honest with someone, integrity, compassion and courage.
Transparency is a quality that creates a vulnerability to the people and world around. Someone who chooses a life of transparency chooses to have no skeletons in the closet, no secrets and faces people and the world with Faith instead of fear.
I've chosen to live my life through truth (my truth), honesty and transparency. I was very fearful when debating to start a blog about what my physical body and emotional self experience on a daily basis. A few of the challenges I face have outdated stigmas attached to them and I thought long and hard about the reaction I'd get from readers who still held these old beliefs. The beauty is that they are not my beliefs and I don't need to worry about other people's judgements around the transparency of my life. These experiences I share are not who I am, they are learning and growing opportunities. I believe there are good and supportive people as well as truthful, honest and transparent people who can relate to my sharings in this medium. As I mentioned in my 'debut' post, readers will learn about me, my challenges, my successes and my vulnerabilities. I choose not to live through fear but through Faith and trust. My energy and focus is on my healing, telling my story so others may have the confidence to not hide and on the people who support, respect and love me through the darkness and the light.
Friday, May 31, 2013
I've gone back and forth many times about starting a blog. My biggest hiccup is around the lack of consistency fibromyalgia brings to my life. You see, I'm a recovering Type A personality and struggle with not being as reliable as I use to be. Once upon a time, I had a great deal of respect for people who were reliable, consistent and great at follow-through. So, there's my dilemma; as a strong woman living with fibromyalgia, I live day-to-day. I'm unable to commit to anything because I never know when the Brain Fog will roll in, the aching pain will strike, or the limbs will take an unplanned hiatus. According to my beliefs around who deserves respect, I no longer fit into my own set of 'rules to live by'. This creates a bit of an internal conflict!
Here I am, ready to take on creating a new belief that fits much better into my life and doesn't exclude me from the level of respect I deserve. I'm moving forward to bring peace to the inner conflict. I'm moving forward to find the Silver Linings of Fibromyalgia!
I was diagnosed with Fibromyalgia in 2002. It took many doctors, my persistence and the wonderful support of my Mom and sister to finally get someone to believe me. My Mom was diagnosed many years ago and my sister has struggled with Autoimmune Disease for quite some time. I'm very fortunate to have family members who can relate to this strange and unpredictable chronic illness.
At first it was difficult for me to determine whether or not my fatigue and soreness were just a side effect of being a single Mom of two year old triplets. Of course that's what all the doctors said, too. I heard that I was under too much stress, I wasn't getting enough sleep and that I wasn't taking good enough care of myself. Well, that pretty much describes every mother of toddlers. Then my left arm went numb at work. My brain would tell it to move and it wouldn't. My arm was very cold and tingly and it scared the hell out of me. That's when I called in all the troops (supports) and found a doctor who half-believed I had fibromyalgia. At the time, that was good enough for me. At least I had a name to the random pain that would switch from a leg one day to my neck another. Since then, I've been diagnosed with IBS, Arthritis, Raynaud's Disease, Hip Bursitis, Pituitary Adenoma, Pancreatic Cyst, Goiter, Hypotension, Major Depression, PTSD and Anxiety. Phew. I'm thinking, "Of course I have anxiety. Who wouldn't with that medical journal of a file."
These last 11 years have had some tsunami's and some beautiful white sand with calm beaches at sunset. I've learned a great deal about how to manage my fibro and after each Flare or Fog, I relearn it all over again. I'm grateful that I bounce!
I plan to be here, sharing my stories and experiences, when I can. You'll get a glimpse of who I am, how I live, my strengths and my vulnerabilities. Above all, I hope I inspire, encourage and activate some of you to keep seeking the Silver Linings!
I have to say that Fibromyalgia is much easier to manage with a supportive husband. My silver lining is that I not only have a supportive husband, I have an exceptional husband. Ray is easy going, laid back and hard working as well as a rock solid support for his entire family.
Just today he's exemplified the type of person each of us, with fibro, depression, chronic fatigue (did I forget to mention chronic fatigue in my last post?), etc. have to manage on a daily basis. The type of support I get from Ray reminds me of the pet companions veterans are utilizing. Not that he's like a pet...oh, my...this is not the direction I meant to go in. Let me just tell you about my day.
I woke from a terrible nightmare at about 6am this morning and I remember opening my eyes but not being able to get my bearings. It felt as though I was back in the waking world but brought the frightening storyline with me. Just when I thought I had a handle on where I was and the awareness that it was just a dream, I was overwhelmed with sorrow and fear. Long dream short, I lost my son in a strange town and no one would help me find him. I burst into tears and got sucked back into questioning whether or not it was a dream. Ray usually takes some time to wake up in the morning, but not today. He was awake and present very quickly then wrapped his arms around me telling me over and over again, in the most compassionate voice, that it was just a dream. I heard him tell me that my son was home safe, everyone was home and safe, including me. I slowly felt calmed and grounded enough to open my eyes and see for myself that we were all OK. Ray had gently guided me to become grounded again and it gave me strength to begin my day on a positive note. I felt strong enough and safe enough to go for a nice walk to start this beautiful, sunny day.
I feel it's so important for a support person to know when to guide a loved one to feel strong enough and confident enough to move forward on their own. It would be very different if he assumed that my nightmare was going to render me incapable for the rest of the day. I need to feel as though he believes that I can pick up where he left off and be the strong woman who continues forward. He sees me. The true me. The me that is sometimes shrouded by the greys of illness, pain and despair. And he expects that the true me will emerge each and every time the illnesses try to push me down. Yet, there is no expectation of a timeline. Ray allows space and time to take its course and never forgets that the real me is underneath, somewhere, ready to bounce back.
Also today, my wonderful husband has been talking about cooking some soup and quinoa salad. He showed me the recipes that he found online and asked some questions about the ingredients, but didn't say much more. He enjoys cooking, but doesn't have much experience in the kitchen. I just assumed that he was looking to gain more experience with some recipes that he liked. I offered to go to the grocery store with him to help him find the ingredients needed and on our way to the store, Ray tells me that the meal he's making is for me. Just because. What!? On his day off. His day of rest! He is making me dinner. Try to understand, this is no easy task. My diet has changed quite a bit over the last couple of years. I eat a clean diet. That pretty much means, vegetables, some beans, no dairy, no gluten, no sugar, no meat, no processed foods (definitely no Monsanto products if I can help it) and low carbs. Granted, I'm not perfect and the occasional chocolate finds it's way into my day sometimes :) He took on this task with a smile and pride! What a treat! Both dishes were very delicious and I'm happy to say there are leftovers, so I don't have to use much energy trying to find meals for the next couple of days.
There are many stories I can tell about how my husband is an exceptional life partner but I'll share just one more from today. As I mentioned earlier, I accompanied Ray to the store to pick up groceries. While in the car, I asked one of my usual questions and that is how I slept last night. This is a typical question because with pain, restless leg syndrome and some intense twitching, I don't always know these things are effecting me through the night. Although, Ray knows and last night was no different. He has told me, in the past, that I 'run' in my sleep sometimes. I grind my teeth and recently my arms have been swinging, as if I'm swimming (which is the most recent exercise I've taken up to try to manage pain). Now that I've written all of that, I'm surprised he hasn't moved out of our bedroom. Anyway, I found out that last night I was kicking him and it must have been pretty intense because he mentioned possibly wearing one of those sumo wrestler suits to bed so he'd be protected. I'm sure the kicking was just a long stride run, but he never wakes me. He tells me that at times he just needs to gently, put his hand on my shoulder and I stop. I'm glad to hear, that's all it takes for me to settle down. I must know, even while I'm sleeping, that Ray has always been and will always be there for me to comfort me after a bad dream, to cook me a healing meal and to gently touch my shoulder when I'm kicking the crap out of him in my sleep. I'm grateful to have found a good and loving person, who I love with all my heart and soul.
This morning was challenging. I woke up groggy, semi-foggy and I wasn't clear of my morning routine. It took effort to remember what I needed to do once I was up. I ended up feeling confused and muddled through waking up children. It wasn't until someone asked what was for breakfast that I realized that I usually cook or set something out for them. Even on challenging days, I'll tell them ahead of time that they'll need to grab their own cereal or make their own lunch. Not today, I spend a lot of time with a blank mind, not even realizing that I usually have a routing. I did look at my calendar for the day and saw that I had an Aqua PT appointment in the morning. So the kids were off to the bus and I took a short, half hour break before getting ready for my appointment. I fell, sound asleep on the couch. It's a good thing Ray was there to wake me on time. I rushed out with my bathing suit in hand and got to PT to find out that I did not have an appointment. I could feel the emotions starting to bubble and I used my mindfulness training to breath, affirm, let go and head back home.
The only other thing on my calendar was food shopping. Usually a task that I take pride in. I have a simple system of printing a menu that comes with a shopping list then printing coupons and I'm on my way. Today this task created anxiety, confusion and upset. I was overwhelmed with the process, although simple, so I began to just write a shopping list and this became muddled. Between my eating habits and teenager eating habits, it seemed as though I couldn't keep clear on what was needed or what anyone would eat. I just wanted to lay down and rest. I wanted to hide until the confusion and overwhelm went away, but the family needs to eat, so I pushed on. Imagine trudging through three feet of boot sucking mud just to find out you went in the wrong direction. That is what my morning felt like. Then life began to sling some mud cakes my way. I played a not so fun game of phone tag with a doctor I needed to talk with, an automated phone system that I couldn't understand. "Am I a new patient if I'm registered at the hospital or am I an old patient making a first appointment with a new doctor?" As my brain was trying to work out this quandary, I was transferred to the operator. I'm sure she would have been very helpful, if I was capable of verbalizing what I needed. I confused her, got transferred three times and finally talked to someone who could translate fibro-brain lingo. My day, at 10am was beginning to close in on me. I started with little energy and the uncontrollable tears began to flow. I just told myself to let them out, let out the stress and frustration then get some rest and take another baby step later.
Over the years of learning how to manage my fibromyalgia, three daily management techniques have emerged. The first is meditation, then exercise and then reading daily inspiration. It is so much easier to let my morning aching body stay in bed, or go back to bed after getting the kids on the bus, but that doesn't help me feel better. You'd think a nice warm, tempur-pedic bed and pillow would make anyone feel better, but too much of a good thing can get stale. So, I know enough about myself to know that I need to feel productive or as if I accomplished at least one small thing a day. On some days it's a very small thing, but it's an accomplishment either way.
The thing that I usually do in the morning is exercise first thing in the morning. I may wake up stiff, sore and exhausted, so I've created a mantra. As soon as my eyes open, I tell myself, "feet on the floor, out the door". There are no other thoughts and if I'm lucky, there are no distractions on my way to the door, because those usually throw me completely off course. Once I'm out the door, I realize the hard part is done. I just need to move my legs at the pace that works at the time. Some days it's a limp to the end of our short driveway and back and sometimes it's a wobbly jog (joggle) of about 2 miles or so. I've found that the exercise first thing in the morning, gets my blood flowing. I believe my low blood pressure contributes to my sluggishness and fatigue. Once my heart-rate goes up some, the endorphins kick in and the muscle aches subside. Then the energy that is usually focused on the aching body can be used in other areas, like, laundry, lunches or just kissing my kids good morning. The energy wears off within a couple of hours, which makes me feel a little like Cinderella. How much can I get done before the endorphins leave my body and I turn into a pumpkin? Along with being aware of not doing too much because that may send me into a fibro flare lasting a couple of weeks. The balancing act is very interesting.
Next is to spend some quiet time reading something inspirational. Lately, it's been A Course in Miracles, which I'm loving! This helps me set the intention for my day so I feel I am co-creating instead of constantly reacting to what the world slings at me. Co-creation, preparation and awareness are all very empowering, then during the brain fog and flare, I have short term memory loss and work to remember this. Maybe I'll place sticky notes around, pointing me to my blog to remind myself of what works for my healing.
Third, is meditation. Oh, I can't say enough about meditation. Imagine feeling that swirling of thoughts, to do lists and responsibilities in your head. Then imagine taking as little as ten minutes out of your day to sit in the quiet and just allow the thoughts to move through without attachment to any of them. After a short ten minutes, there is a feeling of lightness and those thoughts begin to arrange themselves into priorities. Some things fade away because the were not significant and were just eating up emotion and energy. I meditate for an hour each day and have a specific meditation CD I use each time. I'm most comfortable either sitting up with support for my head or lying down and since there is no place in my small home to create a meditation space, I lay in bed. This pretty much means that I'm aware for the first half hour and sleep-atating for the second half hour. I still feel the benefits, but plan to create a cool meditation space with a chair and an alter...I can't wait!
Tomorrow, my eyes will open with my affirmation ringing in my ears, "feet on the floor, out the door". Next my personal time with spirit and inspirational reading and finally, meditation. Mind, Body and Spirit. Balance. Then I know I'll have a chance at co-creating my day as well as allowing the ups and downs to peacefully flow through.
Ever since I can remember, I've been very sensitive. Ok, family and friends, you can let out a little giggle. Those of you who know me best, know that even as a young child, I've had a bit of an intense personality. When I was 'set off', a tantrum would ensue. Looking back, I realize that being 'set off' was an early sign of being triggered with fibromyalgia. I'm sure I didn't have full blown fibromyalgia when I was a child, but I sure did have many indications. The most popular story, in my family, about my intensity is the one where I lost a boot in some very deep snow. My Dad and siblings were all outside with me, playing after a big snow storm. I remember being so light and little that I could walk on the top of the snow without sinking in. Until...one leg sunk to my hip. Although I was bundled to the point of only having eyes and a nose exposed, I could feel the coldness of the snow through my suit. I paused, with my leg stuck in the snow and decided to pull it out on my own. When I did, my boot was missing. It was lost in the abyss of white and cold. Two triggers at once; a cold bottom and a cold foot, as well as not quite knowing how to retrieve my boot. I began to scream. Not call for help or yell to get someone's attention. I screamed at the top of my lungs with tears streaming down my face. My sister recently shared that, as kids, when she heard that scream, she would run to me as quickly as she could. Not to make sure I was alright, but to stop the terrible sound that was coming from me. As she shared this piece that I was unaware of, I realized that as my older sister, this made perfect sense. As sensitive as I was, there were many screams of discomfort which made me feel helpless. I was comforted by her efforts no matter what the motivation was at the time.
My perception of stimulus spans all the senses. There's the physical, when it comes to touch, temperature, pressure, inside as well as outside my body. My tastes change often. My sight changes with flares and fibro fog. The sense of smell can trigger a flare. I carry ear plugs with me, always, because loud noises are uncomfortable. Then there are the emotional, mental and spiritual sensitivities as well. I find that fibromyalgia touches every aspect of my life.
My emotions can shift very quickly in a situation. At times it's difficult to pinpoint the reason for the shift. I'm now able to observe the emotion and try to locate it in my body to determine it's origin. I ask myself many questions; Is it connected to a current event and if so do I have control over the event. Is there something I can do about it to create a better feeling around it? Is it connected to a past event and if so, what is the forgiveness work to do around it and release it? Is it mine to do? Is it mine to be emotional about? This basically means that I pick up on emotions in a room of people, or one of my children could walk by and I feel a wave of stress. These are not mine to do, so I can let the emotion go and shift my energy to supporting them in what they can do about it. Taking the observer's point of view helps me sift through and channel my energy where it will be most useful.
Mentally, I can become overwhelmed with simple tasks. I tend to be very patterned in my life so that I can still function on autopilot when my mental faculties become confused, judgemental or overwhelmed. It's unnerving to be driving the the YMCA (a place I drive to 7-8 times a week) and get half way there and not remember how to get there. I'll remember where I'm going, just not how to get there. I've had to pull over, take a breath and remind myself to just take a moment. I have my back-up plans for extreme cases, like calling my husband or turning on the GPS, but luckily I haven't had to use them. By the way, our YMCA is three miles away from our house, a straight shot with no turns.
I've been exploring and observing more around how fibromyalgia effects my spiritual senses. The past year has proven to be a challenging one when it comes to attending my spiritual center, Unity on the River. I have been a member there for 10 years, I've completed the Disciple program and leadership training as well as been a volunteer for many aspects of the center. Recently, I have been able to attend only half services. Mostly during the meditation section, I begin to feel an overload of energy surging through my body, I'll begin to shake (uncomfortably) and my heart begins to race. During a singing bowl meditation, I got very sick to my stomach. During one of the services, I actively watched myself through the service. It was almost as if the amount of spiritual energy flowing through was too much for my body to handle. I felt that if I had some other frequency to channel the energy, I'd actually be feeling great joy and celebration. Here is my growing edge and I'm sure there will be more about the growth in this area in future blogs.
The physical sensitivities that come with fibromyalgia are probably what most people hear about. There's the shooting neurological pain that you hear about with the ads on TV for medications. What you may not know is that hugs can hurt. The physical, gentle touch of a loved one can send a shot of pain through the body. A brush by the couch, barely touching the edge can send that shooting pain through. It's no ordinary pain. The best way for me to describe it is when I brush by something, I pause (because there's a delay in the pain receptors) and take a breath thinking that this one was safe. Then it hits...shooting, fireworks through the thigh and just like a firework, it starts small and grows, spraying fire from the hip to the ankle. This can even happens on days when I feel I have minimal over all pain.
As I mentioned above, in the snow and boot story, I was bundled with only my eyes and nose exposed. Getting me ready for the cold outdoors was always a major task for my Mom, bless her heart. She would put my long sleeves on and I'd cry, shaking my arm and pointing. I wasn't able to express what the problem was because it was a sensation that was indescribable. It wasn't really pain, it was uncomfortable but more than that. It was a discomfort that if left alone would grow to become painful. After a great deal of patience, the source was found. It was a wrinkle in the shirt sleeve that was under the other shirt. The more layers there were, the more wrinkles there were and I couldn't have any. Can you imagine how challenging that would be in a New England Winter when everyone was getting ready for a great day of sledding?
Thursday, May 30, 2013
Ta-dah! I changed the title of my post. I'll repost the past posts under the new title in the next couple of days, so they don't get lost. I continued my research for blog titles, and found a pretty established one with my name. What's a girl to do? Be resilient! That's the key to so many things in life. I even looked up the word, resilience on Dictionary.com and this is what it said;
[ri-zil-yuhns, -zil-ee-uhns] Show IPA
the power or ability to return to the original form, position, etc., after being bent, compressed, or stretched; elasticity.
ability to recover readily from illness, depression, adversity, or the like; buoyancy.
I found this definition very funny because #1 is how I feel most of the time and #2 is what my body experiences most of the time. I'm surprised my name isn't attached as an example of the two. So, when I say that I bounce, I think most people would say that I'm resilient. I like 'bounce' personally.
As you can see, my new blog is called, Seeking the Gifts of Fibromyalgia. It's pretty much the same concept and I like the word, 'seeking'. I'm a seeker always looking to grow and learn.
Today, I was resilient in another way too. I said 'goodbye' to the Aqua Therapy my doctor prescribed. For years, my doctors have been trying to get me to do aqua therapy. They all say that exercise has been proven to decrease pain. My response has always been to tell them about the walking, swimming and joggling that I do on a regular basis. I continue by telling them that I've noticed that I get the most benefit when it's a good cardio workout. I can feel the endorphins and I'm sure there's a whole stream of scientific terms to explain the chemicals that decrease my pain after a good cardio workout. All I know is that I feel better. Never the less, my doctor's have continued to insist on the Aqua therapy. My biggest question was, "Is it sustainable? Once I begin, can I continue to do this therapy for as long as my fibro sticks around?" (I believe I can beat this one way or another). Of course the doctors let me know that I can only do as many sessions as my insurance will allow. That to me sounds like a, "no, it's not sustainable". My other concern was the drastic temperature changes from the water to the air to the locker room. One of my triggers is drastic temperature changes and can send me into flare for weeks.
I finally decided to try it and see what benefits may come. I told myself, "you'll never know if you don't try." By the second session, I was in such a flare I cut down to once a week from two. That didn't help, so today, I said goodbye to Aqua Therapy. It was not sustainable. created more pain and discomfort and took me away from my normal exercise routine....remember....the one I told the doctor's worked for me. So, tomorrow, I'm back to my reliable, sustainable and helpful endorphin rush. I'm so glad I bounce!