The Perfectly Imperfect Life

This Chronic Fatigue is kicking my butt!  I seem to rest a good portion of the day and I sleep 8-10 hours a night, but I still feel like someone took a vacuum and sucked out every last bit of energy.  I feel like I was run over by an eighteen wheeler, the driver said, 'what was that bump?' and backed up, running over me again.  I should check for tire marks.

I try to exercise every day because it gives me an extra hour or so of energy to make a phone call or do something with the kids.  It also gives me some relief with my pain.  The hormones that are released are very helpful in lessening my pain by a couple of points, for a couple of hours.  This is significant since my body can't tolerate prescription pain medications.  It's the same with sleep aids.  My body exhibits the side effects saved for the 1%.

An hour extra in my day, where I can tolerate the pain and fatigue can feel like a whole week to me.  When I have this opportunity, I tend to jump into the standing to-do list that's been growing since my last hour of relief.  Some days, I can check off two or three things on the list and some things I delegate out to kids or my husband.  I don't enjoy asking them to do some of it, but for the tasks that are on a time frame, I need to ensure that they get done.  I just don't know if two hours from now, I'm going to crash into a state of confusion and fog or extreme back and neck pain.  Those pockets of relief are God sent and I take advantage of the time to be as productive as possible.

Sometimes I get caught in this terrible cycle of not exercising, which leads to more time with intolerable pain, which leads to being more out of it mentally and physically, being exhausted from the energy I exert dealing with the pain and dealing with the frustrations of mental confusion.

The last couple of days have been interesting.  I've felt clear headed and on my game, but the feedback I'm getting from my family tells me that I've been very much off my mark.  For example; I was very sure that I told the children about the schedule for the next few day, but none of them knew.  I've been having challenges with forming complete sentences and I'm stating phrases backwards, often.  There are times when I don't hear it, but the kids will let me know.  I've also gotten feedback on my grammar and misused words in my blog.  I edit the things I get feedback on right away, but even after reading it over and over again, I didn't catch many mistakes.  That's unusual for me.  I'm pretty meticulous about sending something out that is as comprehensive and readable, as possible.

I figure, I have a choice.  During these times, whether it's brain fog or confusion, terrible exhaustion or severe pain, I could put my head in the sand and wait for it all to pass.  I could also, get back into my exercise routine, knowing that starting up again means more fatigue at first then the body builds energy after time.  I could also keep plugging along, taking note of the bumps in the road with a smile (or chuckle) and live life.  I choose living life and exercise.  Sand is hard to get out of the hair.  It's a perfectly imperfect life and it's my life.  The life I cherish!

Sadness After a Great Day

I had the wonderful opportunity to speak in front of my spiritual congregation today.  In preparing what I would say and how I would say it, I was excited to get back on stage.  I use to dream about telling stories to groups of people, teaching classes on self care and self awareness.  These are things I use to do on occasion and each time I did them, I'd feel so alive.  I felt as though while I was teaching or speaking, things flowed with ease and grace and time disappeared. Today, I had my usual butterflies before I got on stage and while I was on stage, I was a bit jittery.  When I was finished, I could feel some of the bubbling of, "this is what I'm meant to do", coming up.   Then the tightness in my chest and the welling of tears.  I really wanted to enjoy and embrace the opportunity, but I walked away feeling extremely sad.

My husband and kids came to support me.  I got wonderful, caring feedback after the service.  I was even approached and told that I would be speaking again, many times.  When this wonderful woman said that to me, she was so confident it made me wonder if I had agreed to speak another time.  I hadn't, but it made me happy, sad and scared to hear about the possibility.

The very first time I did a public speech was in High School.  I was terrified and had a very difficult time finding a topic to talk about.  I finally decided that I'd talk about something that I didn't have to memorize.  I'd talk about a personal experience.  I took it as an opportunity to compassionately communicate how hurt I was when I was the new kid in school, 5 years prior, and I was treated very poorly.  With tacks on my chair, girls telling me I was ugly, to my face, and kids turning and walking away when I approached. I talked about how mean everyone was toward me and how lonely it felt in a new town with no friends.

The second time, was when I decided that I'd work as a clown at children's birthday parties.  I did so well with this type of speaking/performing, I built a business out of it and became a professional for ten years.

Then I became a fitness instructor teaching spinning classes and yoga classes.  All of this experience made it very clear to me that being a leader and speaker was something I had to do.  It is part of who I am.

Now, with fibromyalgia, I don't know how I'm going to feel from one day to the next.  I know that during the dry, Summer months I feel my best.  I'm capable of doing more and I feel more confident about committing to things in the future.  The last two Summers, I thought I may have overcome the fibromyalgia and chronic fatigue and made some big plans that carried into the Fall and Winter.  Unfortunately, I had to cancel once the damp, cold weather rolled in.  I let myself down and others who were relying on me.

My heart feels as though it's torn in two.  I'm called to speak!  I'm called to tell my story and inspire others to tell their stories and share the gifts they've gotten from their stories.  I'm called to lead.  There's a fire in my soul to speak the truth and encourage others to do the same.  This illness.  How can I let that fire burn when this pain and fatigue take over my body?  My soul has a strong and passionate mission and my body is experiencing illness that doesn't allow my soul to soar.

I have great Faith that I will find a way to allow my soul to soar.  I'll keep listening to Spirit and following the breadcrumbs.  The answer is within me....somewhere and in time, I'll hear it loud and clear.

Thanks for reading, forwarding and following my posts!!!

Dear Sleep,

You sure are an illusive one.  And tricky too.  I appreciate visiting you each day with my fluffy blanket pulled to my chin and my cozy tempur pedic mattress gently holding me.  Between you and me, I'm fortunate to have the opportunity to visit you when my body needs the rest.  Our visits each evening are comforting and our brief hour or so get-togethers during the day are appreciated.

Often when I hunker in and close my eyes, it feels as though you arrive very quickly.  Sometimes my body aches and pains interrupt our time, but other than that, I feel relaxed and within your spell.  Can you tell me why when I do awake from your spell, after visiting for 8 or 9 hours, I still feel weak and tired?  Isn't this your area of expertise.  My understanding is that your role is to help my body and mind rejuvenate so I can visit Waking Time with energy and invigoration.

Lately, Waking Time has offered me some exciting and inspiring experiences that help distract me from the physical challenges and I've been energized by these prospects.  So, I apologize for not keeping our scheduled appointments; nightly at about 10pm.  There are just so many ideas flowing through me, I'm motivated to share them on this blog and the best time to do that is when the family has settled in for the evening.

I've also missed our daily nap time visits that my body craves at about 2pm, but last week, you were keeping me under your spell for three or four hours when we agreed on an hour at the most.  I do ask that you respect my wishes because balance between you and Waking Time are very important to my overall health.

Sleep, I do love you and have spent extra time with you, especially this past Winter.  We learned that the extra time was detrimental to my overall health and you kept tempting me and drawing me in.  This is very difficult for me.  Due to the Chronic Fatigue, Fibromyalgia and Depression, I'm going to have to set some clear limits.  I realize this will be an adjustment for you and I know that in time you'll see that I'm not abandoning you.

Tonight, I'm going in to do a sleep study.  I'll have more answers once the results come in and can make some clear decisions about you and me.  I realize that some of our challenges are not all your fault.  Sleep, you and I are fortunate to have someone close by to give us feedback on how the time we spend together goes.  Ray tells me that I grind my teeth pretty badly, I run in my sleep and sometimes kick him by accident.  Recently, he told me that I was swinging my arms in the air when I was under your spell.  I can only assume that my body was imagining doing laps in the pool.  I'm not sure if you've known about this unusual activity while we spend our time together, but I do take responsibility for those interruptions.

In this moment, I'm struggling to keep my eyes open.  My body needs you and I can feel your pull.  I would enjoy spending some time together this afternoon, but I've been advised against it in order to get the best results from the sleep study.

So, lets work together in the future.  No more pulling, tempting and drawing me in, during the day for hours on end.  I ask that you make yourself available for when I need you and we stick to a schedule as well as we can.  I'll visit between 9pm and 10pm and occasionally during the day for an hour.  I can even help us stay to the hour by setting a gentle alarm to remind us that we must part until the evening.

You're important to me and I know we can work this out.  We're a team and we need each other.  Thanks for all that you provide for my wellbeing and thanks for understanding.  I'll be closing my eyes and visiting again tonight.  Till then, my friend.