Dear Santa Claus,

Dear Santa,

I don't like to ask for much. Every year my wish is the same, a happy and safe Christmas for my family and friends, peace on earth, the usual. But this year Santa I'm asking for something for myself, all I want for Christmas is to be pain free.

I would really like to make plans for the next day, and to actually wake up and be able to do them. I'd like to take my kids on activities or go out with my friends, things such as, geocaching, hiking, skiing, and even a movie, and that it won't take a day, or more, to recover. I'd like to actually use the word "promise" when planning something with my boys, knowing I can hold to my word. To sit and play with them on the floor without it being a nightmare of stiffness and pain to get back up after. To go on a simple shopping trip and still cook a meal afterwards rather than having to buy pre-made food for dinner that day because I know, without a doubt, I'll be far too fatigued to do more. I want to hug my boys without fear of the pain it will likely cause. To cuddle with my little ones on the couch while we watch a movie and not be afraid of their little elbows and knees, knowing if they bump me it'll feel like someone has stabbed me with a hot poker. I'd like to have the energy to live in a clean & orderly home again and to give the handmade gifts I love to do.

I know this is a pretty tall order Santa, I really don't like to focus on myself, I love the gift of giving, but it's very hard to give the way I like when I feel like a piece of crap. So just this once I ask for something for myself, to have a "normal" life again. Thanks in advance!

~Shannon

Ps. You will probably need God's assistance with this one :-)

One Blessing at a Time...

This morning I woke up before my alarm. This isn’t particularly unusual except that it was timed a bit nicer this time, rather than 2 or 3 hours before, it was only about 10 minutes so no great loss and kind of nice to not be jolted awake, even the radio can be a bit unnerving after a crap sleep some nights. I find waking up to a specific time (due to erratic sleep patterns perhaps) extremely difficult, and it doesn’t seem to matter what time that is, so I set my alarm a good half an hour before I actually need to be out of bed so I can let myself wake up a bit more gradually.

My routine is basically this: iPhone harp alarm goes off, I wearily hit snooze and attempt to doze off for a few then radio alarm comes on and I blearily try to listen to the "97 second" news update. By this point I might open my eyes, if I can, I reach for my iPhone and check out fb & twitter. Yes, I’m an addict, my name is Shannon and I’m addicted to social media. There, I said it, but I’ll tell you something else, just seeing others starting their day with cheery (and sometimes not so cheery) messages helps to put me in a better frame of mind to start my day.

Here’s the weird thing about today’s routine, I’m laying on my back, reading tweets and suddenly it occurs to me, I have my ankles crossed, and not only are they crossed, it doesn’t hurt! What? No pain? What is this? A small smile starts to tug at the corners of my mouth. One of the cats jumps up and walks up my belly, across my chest, to give me a nose kiss, still no pain. That smile is growing by leaps and bounds, so I call in the other cat just to be sure and then I start poking myself, maybe I’m dreaming. Nope, I seem to be wide awake. I get out of bed and I feel awesome!

Ok, so what, big deal you say. I tell you what, if you’ve ever had a bad case of influenza remember what the first day felt like after you were better. It’s a big deal, but soon you forget all the aches and pains and life goes on it’s merry way, you take it for granted that, other than an occasional headache or after you bump your knee on the corner of the coffee table for the umpteenth time, you will go about your day pain free. For someone with FMS (Fibroymyalgia Syndrome) amongst other things, pain is a constant companion, those flu like aches and pains are NEVER gone. Imagine this, your cat jumping on your legs while you're laying down is uncomfortable, a hug can leave you breathless and forget your child ever sitting on your lap and cuddling, the pain is so excruciating you feel like someone is pouring a layer of hot lead on your legs.

I just had an odd memory this morning, when I was a child I often woke with “growing pains”, yes, I know that’s not odd, shush for a moment. What I’d forgotten is what I felt like in the morning some days. As far back as I can recall, say the age of 9 or 10, some mornings I would wake up and feel like the Princess and the Pea. Remember that story? With all those mattresses, what was it, like twenty or so, that poor princess could still feel the pea and woke up feeling bruised and battered. I remember relating to this story so significantly that I thought maybe I am a princess and somehow I was switched at birth (not kidding). I know I am no princess (except in my daddy’s eyes, but he’s been gone some time) but that tells me just how far back I’ve lived with pain. In just a couple of months, I'll turn 42 years young, so that is at least 32 years of almost daily pain. I’ve had periods of remission, but I think that’s still pretty significant.

This time it’s been well over four years since I’ve had any reprieve. Last time it was for one blissful day. Pain free is so significant and such a blessing that I can recall the exact feeling even if I can’t recall the exact date. I’d been at a prayer meeting the night before and the pastor and attendees prayed over me. It may once again only last for a day (I was going to add maybe only an hour but it’s already been 3 hours :D ), but even if it lasts one week, or one month, I pray that I NEVER, not for a moment, take this blessing for granted!

So, when I say I woke up today and I am pain free, I can shout for joy and tell you that it is a HUGE deal! “Thank you Abba Father, thank you for this gift, for blessing me with this day. Thank you for giving me the pain too, so I can remember to never take any day for granted!”

“Make a joyful noise unto the Lord” Psalm 100:1

Blessings, ~Shannon

For more understanding of the life of those with chronic pain read Christine Miserandino's "The Spoon Theory" and check out her website, "But You Don't Look Sick"

Casting Crowns, "Praise You With the Dance"

Best laid plans......

During a twitter conversation Thursday morning with a friend, I mentioned that things rarely go according to plan so I usually attempt to “go with the flow” in my day-to-day life. As with most important lessons in life, I’ve learned this very one the hard way. Having fibromyalgia (FMS) and chronic fatigue syndrome (CFS) there have been far more occasions than I care to count where I have made plans and promises to do something, and ended up laid out flat; Barely capable of dressing & making my boys pb&j’s for supper, let alone attempting to follow through on plans. Becoming adaptable, and hopefully teaching my children the need to be adaptable, has become something of an art form for me, this past Thursday being another example.

Weather in our area has been less than stellar this spring, with it snowing up to the last weekend in May, many plans have had to either be set aside or permanently squashed. The school track & field day was originally May 28th, then postponed until June r3rd due to said snow, only to wake that morning to dull grey skies, temperatures barely moving into the double digits in Celsius and a light drizzle. Lovely.

They did go ahead with the track meet but as the rain turned to a steady downpour and temperatures dropped I realised that I could not be there in the afternoon to watch as I had assured my children I would. Standing outside in cold, very wet, weather would have left me incapable of doing much for the remainder of the weekend, leaving any further plans I may have in the dust so to speak. I feel terrible, I always do, even though I know I have to make these choices. Sometimes it’s worth the pain and sometimes, quite frankly, it’s just not. I tried to make it up to them, we got takeout from town, picked up the newly released “Alice in Wonderland” blu-ray, some movie junk food and had a nice family movie night. Maybe this weekend, weather permitting, we’ll work our way to the city geocaching and/or a trip to the zoo. It won’t bring back the memories of their last track meet with his school, but it’ll help, hopefully, ease their frustrations with Mum’s limitations.

Aspects of adaptability in the face of FMS:

· Rarely make promises beyond promising to do your best to be there or complete a task.

· Deadlines best be set, at minimum, to double the amount of time it takes others to complete the same project. Then add extra time on top of that.

· Lower your standards. I don’t mean to substandard levels, but perfection is rare at the best of times… for us, expecting such is counter-productive (I think many of us are often perfectionists, so this is easier said than done).

· Go easy on yourself. We may want to be like “normal” people, with “normal” energy levels, but we’re not “normal”… therefore….

· Just do your best!

No matter how much I plan, or decide I want to do, in the next day, next week, next month, or even within the next year, I have to include some a bit a LOT of room for adaptability and that some plans may never come to be. Acceptance, with gumption, is crucial to not just surviving but living a life where pain is our constant companion. Don’t give in, and never give up hope!

MAWOY!!

~Shannon *hugs*