Posts Tagged ‘CFS’

I have Chronic Fatigue Syndrome.  It is not who I am .  It does not define me.  And yet there are days when I really feel it.  Since moving west I’ve moved my body more than ever and I’m loving how my body is responding.  My skin is glowing, I’m drinking lots of water, eating fresh foods wherever possible, getting outside into the sun or rain and walking most everywhere.

When I first got here I was absolutely exhausted.  The Archbishop asked if my soul had caught up with my body from all the traveling, and when I stopped to ponder his words I realised that it had not.  And that was sad.  So I rested myself more than usual, took things slower and generally listened to my body.

One of the challenges with CFS is chronic pain.  It’s manageable…I’ve lived with it for 18 years.  Most days, once I get moving, it’s barely noticeable and so, I’ll admit, I get a bit cocky…and then that’s when my old friend returns.

Late nights, early morning, poor nutrition choices, overloaded work schedule, stress, etc. etc. etc. and soon the dance of fatigue becomes more complicated.

Last night was one of those nights.  I found my body getting heavy.  I found my ability to concentrate diminished. I fought to stay alert and when I started to lose my horizon I lay down.  It took me a little while to figure out which way was down, but once I did, gravity did the rest.  I slept deeply, heavily for a couple of hours.  Woke up refreshed and needing the bathroom.  Returned to bed and slept deeply again…glorious, restful sleep.

So today as I look at my schedule for the week, I’m going to be a bit more gentle with myself.  I’m still going to walk, but not push myself…life is a marathon, not a sprint.  I’m going to eat food I enjoy, and savour it.  I’m going to begin to journal again, noting the joy and challenge in my life.  And I’m going to live.

Slowly, I’m learning to reframe my language into something that is positive.  A wise friend recently commented that language and words define our power…define our reality.  And it’s so true.  “Sticks and stones will break my bones, but names will never hurt me” is a fallacy and a damaging one at that.

My biggest critic is the negative self-talk that permeates my being.  Instead of building walls to keep people out, I’m going to build walls to surround the negative self-talk.  I will acknowledge it, dismiss it, and move on with my life.

A challenge?  Most definitely.

Do-able?  Absolutely.

Because I choose to be happy.  The only actions I control are my own.  And so I will choose to come from a place of love — always.  I will choose to come from a place of peace, of hope and of joy.

Oh there will be bad days…but they will not define me.  Like my CFS does not define me.  Right now we’re dancing the CFS is leading, but not for long.  And when that dance concludes, I’ll send him home.  Then I’ll continue to dance the dance of unbridled joy…perhaps even dancing in the rain.

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I am less than a week away from two glorious weeks of vacation. And of course, we are in the midst of a horrendous heat wave in the part of the world where I live. So instead of bustling about, I’m sitting in front of a fan, praying for the weather to break.

I’ve got most of the big things in place to be away. I have the bulletins finished, just need to pick up one set from the printer. I have the readings selected and ready to go for the weeks I’m away. I have pastoral calls prepared for this week.

What I’ve not done yet is prepare my clothes, plan the itinerary and start packing. All of these things are fun but I need to get other things done first, including cleaning my house. Ugh. If only the weather would cooperate, so I could get up and do something without dissolving into a puddle, that would be awesome. C’mon Mother Nature, help me out here.

I am looking forward to two weeks of travel, leisure, yoga, stretching, fabulous food and drink, sleep and nature…not necessarily in that order. I have a new journal that I’m taking with me. I’ve not yet started writing in it, and I’m not sure why. But I’ll get there.

So, for the next couple of weeks, blog posts will be non-existent, but I promise to share all kinds of loveliness when I get back.

Can’t wait to get off the treadmill of “busy” for awhile. To redirect my rhythm and finally start to feel better. I am excited to feel better, for what will feel like the first time in a long time. But I can do it. I know I can. I have to.

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Today has been a strange day. I usually wake up raring to go, have things to do, places to go, people to see, and yet today, I just wanted to go back to bed. I got my Beloved off to work, fed the dogs, fed myself, and cleaned up the kitchen. Then I had a shower, got dressed and double-checked my schedule. It was shaping up to be a good, albeit busy day. I got to the office and checked messages. One from the Municipal clerk. So I called her back.

She wanted to know if I would pronounce the invocation on the new council members on the 1st of December. I was touched, and honoured, and thrilled. When I said yes I don’t know who was more excited…the Clerk or myself. I wrote it in my calendar and then started thinking about what I would say and what I should wear. Something to look forward to.

Then I got a call from a parishioner who is being discharged from hospital today. I tried to figure out the best place to schedule her and realised I didn’t have as much time as I thought. I am having tea with a friend today. I have had to cancel a few times and I promised myself that I would not short change her. So I rearranged my schedule and will be picking up the parishioner at a better time for her and for me. It means that I am shortening an appointment I have with a parishioner this morning, but it will work out okay.

This learning to take care of myself and honouring my time is challenging…but I think…maybe…perhaps…I am learning how it do it better…or at all.

Look at me go!

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The month of October is turning into a logistical nightmare.  Our Diocesan Clergy Conference is generally held in late September, but because of the Guest Speaker’s availability, it was changed to the end of October.  And that’s great.  The Rural Ministry Symposium runs every other year at the end of October.  And that’s also great.  Traditionally I take 10 days vacation around thanksgiving.  And that’s awesome.

However, this year, they all run together.  I came home today, a day early, to get laundry done, see my family, and clean the house.  Yay.  I leave on Wednesday for Clergy Conference which concludes on Friday, then I preach on Sunday and am heading out for the Rural Ministry Symposium a week from tomorrow (Monday).

Insanity.  Trying to get anything finished is daunting.  The 10 days I had away are already wearing thin.  I don’t know if I need more time in a day or a better way of dealing with the increasing pile on my plate.  Perhaps I need a bit of both.  Anyway, I have a very little bit of downtime before I’m back on the run again.  Thanks be to God, I have a reliable vehicle.  Who’s theme song for the month of October is…”On the Road Again”…

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It was a great time on vacation. I spent the best part of the first week sleeping. I knew I was exhausted, but I had little comprehension of just how exhausted I was. I look rested, I feel rested and at the same time I’m feeling quite overwhelmed.

I have had difficulty keeping focus since I got home. The house is in a perpetual state of disarray, and I’m trying to get laundry done, as well as organize the next couple of weeks. I will be very glad when school starts and swimming lessons finish so I can return to some kind of routine.

Being away I had a lot of time to think. About who I am and what I want. I have realised that I don’t have the physical strength to do many of things I really want to do. I wanted to take up running again, but I don’t think my joints will handle it. I wanted to do all kinds of things, and yet I didn’t get many of them done. And I guess, that’s okay.

So right now I’m dealing with a full-blown CFS flare. My body aches, my joints are warm (which is not good), my sleep is interrupted, not restful and I’ve got more verbal and cognitive confusion than usual.

I likely could have used one more week, but the reality of the parish means it’s not possible. I came back to a massive pastoral issue that needed to be dealt with and still needs to be dealt with. And there is the joy of an out-of-town wedding on Friday/Saturday, then another wedding the weekend after.

So it simply never ends.

I’ve had a houseful of people since I got home and I can’t find a moment’s peace. And it doesn’t seem to matter. So, I need to breathe, remove myself, and try to be gentle with myself.

After two more emails I will. Honestly.

I am glad to be back. I am.

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My dad

This past couple of years have been challenging. I’ve struggled with depression, with CFS, with an active and aging congregation. I’ve presided the funeral of too many friends, of my dad and of his best friend. And while we are called to remember that death is not the end, but the beginning of new life, it still sucks when someone we love dies.

My dad was my editor. Every university paper and newspaper article I wrote, he read. He never changed content, but read to ensure grammatical accuracy, spelling accuracy and would usually comment, concisely on whether or not the point I was making was understood. Eventually my writing improved to the point where he would read the document and send it back with “I find absolutely nothing to criticise”. High praise from my dad.

His death on the 12th of June was expected but also too soon. We knew he was failing, his health had been failing for a while, and yet although we knew he was dying, we had not fully reconciled that he would actually stop breathing. So when he did, it was a shock. At the moment of his death my mother and I were at the funeral home, planning for the inevitable, never imagining it would be so soon.

I have lived in a different city from my parents for more than 20 years. I don’t get to see them as often as I’d like. And yet when I did see them my dad and I didn’t spend too much time together. I would stop in his room and we’d chat about the weather, or the drive, or the mechanical fitness of my car. And yet, I knew, when I had a really big problem, or when I needed advice, that he would be there for me.

I would send him long, rambling emails and a couple of hours later I’d get back a paragraph, at the most, with a suggestion. And it was never something I’d considered, or wanted to consider, and yet he was always right.

My dad was a storyteller, some of my earliest childhood memories are of snuggling up with him, and hearing stories of his childhood. He was a natural storyteller, and taught me well. I tend to be more flamboyant than he was, and yet I love a good story told well. Dad never waved his arms around or used voices or accents other than his own. And his stories were the greatest.

I find myself thinking of him a lot lately, as we just marked 3 months since he died. There will never be another opportunity for him to edit one of my articles. I won’t be able to get his concise answers when I ask for advice. It’s difficult understanding the “never agains” that have happened and will continue to happen as we mark the events, large and small in our lives.

I know he will be with us always. I hope he can hear what we are saying and feel how much he is missed. What I miss most is the awkward hug I’d get at the end of a visit, when I go and say goodbye to him, preparing that it may be the last time I’d see him alive. And he’d always say the same thing; “take it easy” as I was getting ready to leave.

So dad, if you’re reading this as I type it, or will pull it out of cyberspace to give it a once over, thanks. Thank you for everything. For being my dad. For teaching me to tell the story. For supporting me even when I broke your heart. And for loving me, although the words were never spoken, the emotion was understood.

I love you dad, I miss you. Take it easy.

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The past week has been a crazy, busy week with appointments, meetings and pastoral calls. Add to that the usual busy-ness of a household, laundry, cooking, cleaning, etc., and there’s just not enough time to get it all done.

I struggle with a condition called CFS or Chronic Fatigue Syndrome. It’s a rather mysterious and mis-understood illness that affects the immune system. I’m fortunate that my type of CFS is considered mild. To give you an example of what it feels like to have CFS, think of how you feel when you have the ‘flu…the aching, tight chest, dragging feeling. That’s how I feel on most “good” days.

But being the type of person I am, I push though it, I “ignore” the pain and get on with doing what needs to be done.

And on occasion, when I’ve overdone it for too long, and under-appreciated my body I get a stern warning, usually in the form of overwhelming exhaustion that makes my body shut down until it gets itself rested. On Wednesday night, this happened. I had “just one more” thing to do and I went upstairs to put some laundry away. Suddenly the horizon vanished and I had no idea if I was right side up or upside down. I don’t LIKE that feeling.

I called for my husband and he helped me find the way to right myself, and get me into bed. Yesterday, after a particularly grueling morning I left the unfinished things at the office and came home to lie down. I slept most of the afternoon away.

Today I feel like I’ve been put in a bag and beaten, but at least with epsom salt baths and early bedtimes, I’m beginning to return to some semblance of better. I wish I didn’t have this disorder and yet it helps me (as strange as this sounds) to better care for myself. Because when I ignore the longings of my body for rest for too long, my body fights back.

So, if you’ll excuse me, I’m going to make a cup of sleepytime tea, and retire early tonight.

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