The wind is howling.  Ice shards are ripping through the air.   The temperature has dropped drastically, quickly, turning slushy foot steps into frozen traps to twist an ankle in, covered by newly blown snow.   The roads are ice.  The skies are bleak grey. 

I woke up at 7 AM, despite my usual habit of sleeping in, because my body is reflecting this weather.  Cold, aching, tense, full of injuries waiting to happen, raw like it’s been abraded by the ice.  My plan for the day?  Living on a heating pad, soaking in warm tubs, drinking hot drinks, and just getting through this painful day.  

Happy Halloween!

There are times, being a stay at home mom, having fibro, that I swear if it weren’t for holidays to mark the passing of time, I could just sleep my life away.   But, holidays come along, and you realize time actually passed, and you have to get up.  You have to get dressed and tidy the house, even though you’re zombied out so hard you could probably play a role in The Walking Dead.  

Halloween has come at the wrong time for me this year and everything, from carving pumpkins to planning costumes, has been a monumental task.   I’m looking forward to the pay off of tonight though.  Tiny chocolate bars and cute kids… what better reason is there for getting out of bed?  

Enjoy the spookfest!

Victory!!

I’m proud to say, despite whining on many, many, many occasions, my New York trip was a resounding success. 

The ways in which I ended up limited by my pain weren’t nearly as many as I thought they’d be.  I gave up on fashion for the sake of comfort more than once.  I drew a few lines in the sand (“no, I’ll be sitting over here in the shade while you stand in the scorching heat and check out the displays”).   And I spent a couple days, mid trip, recuperating at a dear friend’s house in New Jersey, rather than running at New York speed the full seven days.   It paid to moderate myself a bit, rather than try to be superwoman.  In the end I hit the final day of our trip still smiling and still walking. 

I’m so glad I was pushed out of my comfort zone, pushed out of my day to day routine.   It was such a rewarding experience, so worth it for myself and especially my marriage.    

 

Dual Me

I have too much to say.  

I have nothing to say.

I’ve typed and deleted about 20 different posts today. One complaining, one trying to be positive about the new start of the school year. One angry. One looking forward to better health. One dreading a painful flight this month. One looking forward to a new adventure.

I want to yell and scream and tell you all how much my knees and hips and back have hurt all summer and made life miserable.   I want to punch something because I still have to try to get to and from New York and survive the whole ordeal while seeing as much stuff as my husband wants to see and not wasting our money and time in going.   I want to kick something.  I want to rage.   I hate being a blob of pain.  

I want to beam with pride at all the things I’ve accomplished.  The training I’ve achieved with my new dog.  The longer distances I can walk.  The volunteer responsibilities I’ve taken on.  The things I got done around the acreage.   The amount I’ve done around the house.

Bad.  Good. 

Life’s about both I guess. 

I finally gave up on my mind being able to settle on what side of life it wants to look at, because it all matters.  The good, the bad, the ugly, the brilliant.  It matters that I’m angry but still moving forward.  It matters that I’m looking forward to fun, but still planning coping strategies.  It matters that I’m talking about my limitations, while still striving to push a little further every day. My smiles matter. My tears matter. My journey in its entirety, I hope, matters.

Supporting Others

This week I faced an enormous physical struggle, in the simple act of sitting in a hospital room to keep my grandmother company.   Staying in a bed that’s not my own, walking through a hospital, and sitting in chairs all day, definitely pushed me to my limits.   Thankfully, I was well enough to tough it out, but had she stayed any longer in hospital, I don’t know that it would have turned out the same.   The next two days will happily be taken as recovery days, before we whisk away on our long weekend.  

I feel angry that my body puts these limitations on me, on how I can help.    I resent it immensely today, even though everything worked out in the end.   I want to be able to give other people as much of my time and attention as I want, not as much as my exhaustion will allow.  

Why Aren’t I Posting?

I’ve been struggling to come in here and post.   I think it’s been almost 3 weeks now.  Part of it is the chaos of summer.  Part of it is the sheer exhaustion of summer fun.   But a big part is that I’ve been wanting to push, push, push, and that has meant not wanting to acknowledge my fibro any more than I absolutely have to.   

But, I think there’s a disservice in that, both for people learning about fibro, and people suffering from it.  If we’re only ever talking about it when it’s debilitating and we’re angry, then we tend to forget that it also lets up sometimes, that there IS better health to look forward to, to strive for.  Now, don’t get me wrong, I wouldn’t wish fibro on my worst enemy, but I guess if I had to end up with an illness, I can at least count myself lucky that I ended up with one that lets up on occasion enough for me to get out and enjoy life. 

So, here I am, even if the post is simply to tell you that lately I am reasonably busy, reasonably healthy, and reasonably happy.  A bit boring, a bit hum drum, but hey, that’s honestly the way life goes sometimes, and I’m happy for it. 

 

Recovery

Summers are fun, full of campouts, visits, trips to parks, and walks with friends.  But they are also, by necessity for a fibromyalgia sufferer, full of recovery time.  It seems that lately, with the weather we have had around my area, that means weekends of camping out in the rain, and then the better part of a week recovering at home while watching the sunshine from the window and resenting the timing.   Today is one of a few days where I am actually savouring my recovery.  After a weekend of camping at a women’s retreat, I am absolutely loving the quiet solitude of my house.  The comfort of my couch.   The steady temperature.  The comfortable jammies.  I can feel my nerves sighing in relief.   My whole body smiling at the chance to just relax.   I think there is even a pedicure and a warm bath in my near future.   Today I am happy to embrace recovery.   

Getting Rowdy

Moving is hard.  Motivation is difficult to come by.  Exhaustion is easier to listen to than joints begging for a walk.  

So, I did it.  I complicated my easy life.  I forced my hand.   I finally got a puppy.  An energetic, needs a playmate, peeing in the house if I don’t let him out, pooping wherever he feels like if I don’t take him to the right corner of the yard, puppy.   He needs walking, he needs attention, and most importantly, he gives me something to think about when I’m walking, other than the pain.   Already my energy is climbing, my aches are a wee bit less, but most importantly, even when they aren’t, I HAVE to go anyway.  Rowdy needed us, and we needed him.  It’s a match made in heaven.  

 

It’s not about the pain!

I’m sure that by now most people who are internet savvy in the least have seen this wonderful little gem of a video, poking fun at the tendency of women to want to talk about problems, without doing anything to solve them.  For some it might ring completely untrue, for some perhaps a little too true.  Personally, it was so familiar a conversation to me that I felt the need to run my hand across my forehead and check for ‘the nail’. 

It’s been funny how many things I’ve heard since that keep making the video pop back up in my mind.  Of course, I can take pretty much any topic and make it about me and my chronic pain, so I’ve been letting it stew before I try to explain why it stuck with me.

Throughout the last week and a half, my husband, my rock, my support system, has had a gout attack so bad that he’s been almost completely knocked off his feet.  Unable to sleep, sweating the pain is so bad, unable to walk, in such agony he can’t hold still.  During that time I’ve had to bite my tongue repeatedly on unsolicited “Have you tried…” remarks.  And I know some have snuck out that I didn’t catch in time.  Have you tried soaking it?  Rubbing it?  Stretching it?  Icing it?  Putting it in the air?  Taking a hacksaw and removing the dratted thing?

I’ve been the world’s biggest hypocrite.  As fibro sufferers, we all know how completely aggravating ‘Have you tried…’ is. We will not make it a month as a newly diagnosed fibro patient, without hearing about a million and one new ‘cures’, books, therapies, or ‘worked for my aunty’ remedies. We will dig, and research, and put the onus upon ourselves to find the cure (because surely actual researchers just didn’t read the internet in the right order or they’d have seen it), and when we’ve finally worn our brains raw digging through studies and pharmacological data and physiotherapy techniques, we will crawl into bed exhausted and in pain one day, only to have someone ask, “Have you tried…?”

I belonged to a support group once which focused quite heavily on articles about how the outside world should treat fibromyalgia patients. How they shouldn’t offer unsolicited advice, how they should be considerate, understanding, and all the things that on the surface make total sense. But recently it’s hit me as the chronic illness equivalent of saying ‘it’s not about the nail’. “I’m going to lie on the couch in my sweat pants, looking like a wreck, in pain and exhausted, and you just need to sit there and sympathize.”

I know that we’re all in our own journey with pain. We’re all in our own place with our health. For me, right this minute, while I may not be able to take the unsolicited advice people give (no, that fad diet is not going to help and that expensive gadget will not magically erase my pain) I’m willing to use the spirit of concern, caring, and problem solving it was offered in, to help motivate me. To help show me that people really actually care about how I am. They want to see me out and having fun with them. They want to see me happy. They are bothered that I am in pain. That is something I don’t want to program out of the people around me.