"Let the gratefulness overflow into blessing all around you. Then, it will be a really good day." Louie Schwartzberg
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Chronic Fatigue Syndrome and Hope

posted by Susan Dominikovich on , , , , , , ,

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For those of you who don't know, our eldest was diagnosed with Chronic Fatigue Syndrome about a month ago.  I use the word "about" rather loosely because its easy to lose track of time when the days of waiting turn into weeks and so on.  What I do know is that he started to droop in the middle of February after only a few weeks of school.  And not long after that, the droop turned into excessive tiredness and fatigue, the likes of which his doctors have never seen before. Since then we've been to countless consultations, appointments and examinations.  Chronic Fatigue Syndrome is a diagnosis of exclusion so he had to be tested for everything first.  He's had a night in our local hospital, a trip to Palmerston North, an MRI, EEG, lumbar puncture as well as numerous blood tests.  And sure enough, every single test was negative. No smoking gun. Only theories.

Chronic Fatigue Syndrome was all that was left. 

The road ahead is unclear. We don't know how to ease his symptoms and we don't know how long he will suffer. All we can do is guess so the road ahead involves trials of different drugs and therapies. The road is a storm which leaves this mama's heart torn in two equal parts: one part frightened and one part hopeful. With each drug we try I am as much frightened of the consequences as I am hopeful that it will make a difference.  This time.

We have beautiful friends. Amazing friends who support us practically and emotionally. I am grateful for them and quite frankly I don't know what I'd do without them.

Yet with every hug and with every conversation and with every offer of love and affection from them, I have found myself needing something they cannot give me. I ache for a look or a word from someone which says, "I get this; I understand." Someone who gets the unpredictability of chronic illness and of living every day with uncertainty. And the look in their eyes or the catch in their voice would convey more than the words themselves.

Today I got that.

It is Mother's Day In Canada and I rang my mum who is living in an Intensive Care ward of the hospital on Vancouver Island.  My mum, who has suffered from chronic illness almost all of my life, spoke to me with a gentle smile in her voice and listened as I described the rhythm of our life and that some days are harder than others but we still hope and we still persevere. She simply said, "That's all you can do." 

That's all you can do.

And it meant so much, because of course, she knows.  She gets this; she understands.

Happy Mother's day to the woman who has taught me what I need to know about hope and perseverance.

For this day, today.  Right now.

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