Ow... Seriously...

(album cover for Pain)

So, what do you do when your family is staring at you half expectantly and half hopefully?  You either harden your heart and tell them unequivocably NO or you suck it up, count your pain pills and go.

Which is what I did Friday night.

It was really a stupid decision but it gives me an opportunity to talk to you about coping mechanisms and kids who grow up with chronically ill (a term I use loosely, people in pain aren't sick) parents.  

My ex-husband is better about my health issues now than he ever was when we were married but he believes he needs to push me, to get me to remember that  there are things I CAN do.  And one of them is go out to dinner, shopping and a movie with him and the kids.  

Which, normally, would have been a stretch, would have left me in some pain yesterday but nothing as bad as it was.  

So, coping mechanisms for pain spikes while out?   Start by slowing down.  Sit when you can.  Avoid taking unnecessary tours through shops just because everyone else is.  The sentence "I'll just sit on this bench while you take a look." is not a crime.  It is a stress saver.  It's a pain saver.   Ask/make someone carry something for you.  Have a kid with you?  They're good gofers.  Make them fetch and bend over for you.  Have them empty the carts.  If you have to bribe them, then do it, it's worth it, trust me.  But don't make it a huge bribe or you'll have to do that every time.

Frankly, your kids should help because they can, because they're your mom.  And most of the time they will.  Sometimes, because children are inherently selfish, they will refuse.  Don't guilt them, don't force them.  Don't make it a demand.  Ask them, say please and thank you.  There are moments for commands, but polite requests often work better.

Same goes for spouses, but with them a lot more conversation is required.  Conversation that takes place outside of an argument.  Feelings and household responsibilities and what to do if you're having a bad day.  He needs coping mechanisms too and the freedom to destress in his way.  My ex plays sports.  Told me he didn't need therapy because he took it out on the ball and the puck and by instigating fights and penalties.

Unfortunately, he never talked to anyone, not even his brother, who was/is his best friend.  Never once said to anyone, "Man, I don't know how to deal with this!" And it festered in him.  

If I'd been smart enough, mature enough, we'd have had different discussions.  Instead of "you never!" talks, we'd have had ones that go more like this:

J:  Babe, we need to talk about stuff.

D:  Again?  About what this time?

J:  The house.  It's continuously a mess and I can't keep up with it.

D:  Well, I work all day and you're here.

J:  Yes, but you're healthy and I'm not.  I do my best, but can we divide up the chores differently and, if we can, come up with a plan for if I have a really bad day.

D:  Probably, what did you have in mind?

Of course, he'd have had to be more mature then too but you get the gist of it.  If you start the conversation outside of a fight, it will be easier and more productive.  

Learning to ask for help is a MAJOR thing.  (Yes, we're still on coping, because coping starts with prevention)  Getting people to recognize the signs of a bad day is vital - that means communication.  You can't hold it in and think Oh, it'll be fine. because it won't.  It'll be worse.

If you're having trouble bending forward, say so.  If you have problems with stairs and you have a second floor, do something like throw everything for upstairs in a basket and take it up at bedtime.  Or make a point of telling kids and spouse to "take that upstairs with you!"

But for those days when everything bugs you, everything hurts and EVERYTHING is virtually impossible for you to do there are things you can do in advance.

1. Have frozen meals, including lunches, so you don't have to cook.  Have simple things on hand that can be put together (chicken nuggets and fries are a favourite with my crowd).  Cereal for breakfasts and snacks.  (I go through a LOT of cereal)  

2.  Learn to let the dishes slide, or offer bonuses in allowances for kids who help out.

3.  Have  soft, comfortable clothes and hair bands. Know what fabrics irritate you.  Know your limits for showering and what have you.  Chose to allow yourself days were you simply can't give a damn about your appearance beyond clothes and hair brushing.

4.  Got favourite movies?  Books?  Games?  Have all of them in easy reach for days you can't move off your duff and allow yourself to stay comfortable and involved in those things rather than what's going on around you.

5.  Make sure that people know, if not understand, that sometimes you can only be touched on YOUR terms.     Sometimes when I'm hurting badly I need to cuddle but I don't want anyone touching me.  And the men in my life (yes, men, because I'm a believer in a puppy pile - cuddling for the sake of cuddling and that means I will curl up with a friend to watch a movie) know that.  They will open their arms and wait for me to move into them.  My kids know that if you're going to sit with Mom when she feels like that, you don't fidget, bounce or poke/pinch/etc.   

We're a very physical family and making it known that when I say STOP I mean stop was vital.

For me, coping with hypersensitivity means music with headphones or a game that leads me to a mostly meditative state (games like Collapse are good for that, or Bouncing Balls.  Very little thought, monotonous, repetitive actions) are a must.  I have good books, favourite movies, frozen dinners in the fridge, cookies in the cupboard and always, always people to talk to.  Some of them are other chronic pain sufferers, we help each other.  Some of them simply share some of the same interests but all are friends and people I love, who love me.

A support system is hugely important.  It helps to have friends and family who can come over and don't mind doing your dishes or picking up a little for you because they know you'll do something for them as your able, or just because they love you.  I'm lucky that way.  Someone takes my daughter to school and picks her up.  Others are willing to make trips to the store for me or call and check up or come over and check up.  

And I think I'm done rambling for the day.  

I can count my blessings and come up with two dozen.  How many are in your life?

Introduction

Hello!  I'm Jenn and I've some experience in the world of chronic pain.  And being a Mom and a wife.  I'm 37 years old and this is my story.

When you look at me you see a smiling (usually), somewhat overweight, kinda tall woman.  When I'm out, I'm mobbed by my kids.  I only have two but I swear some days they're worse than having six.  They are fourteen and ten and, since I was gone for two and a half years, constantly all over me.  They're energetic, gorgeous, brilliant (both almost straight A students), empathic and compassionate children.

But they are still children, so sometimes the compassion is a little thin.

They grew up with me, progressively worsening chronic pain, able to do less and less as the years have passed.  I've missed more soccer, more hockey, more school functions and trips than I care to count.  Then in '07, I made it worse by leaving the country.  I was only supposed to be gone three months.  I was gone two and a half years.  Some of it by choice, some of it not so much.  Without an income I was completely dependent on those around me.  It sucked hard.

It was a miserable time without my kids and after a while it started to get to me mentally and I began to break down.  Thankfully, I have a really good relationship with my ex-husband and he got me home.  Now I am back, in my own apartment and I have partial custody of my children.   We are all delighted.

Background comes with an introduction, so here you are.

I was born and raised in the Toronto area and, as was common at the time, the product of a broken home.  I grew up with abuse on varying levels from the extreme to what some would consider relatively mild forms of mental abuse.  If you ask me, "you're fat" lasts longer than a slap in the face.

I moved to Calgary in my late teens and I loved it there but, as was my wont then, I screwed it up and I ended up back in Ontario.  I met my soon-to-be husband that same year and, 18 months later my surprise was born.

Because of a combination of physical abuse  and genetics, I was predisposed to Fibromyalgia.  There are a lot of theories about why people get fibro but I think it hast to do with genetics as much as anything else.  I have six siblings, two other ones, plus our mom, all have fibro.  Funny thing, we're all women.  

But fibro isn't my only problem.  Parts of my spine are deteriorating. Osteoarthritis here and there, joints basically dissolving here and there.  I have nerve issues, likely because of the spine problems.  Anxiety, stomach problems, sensitivities to touch, light, sound and smell.

And two children.  It took my ex three years to talk me into having the second one.

After she was born, I had my tubes tied.  That was it, I was DONE.  Complications with the surgery led to other surgeries.  Five in total.  I am now sans uterus with ovaries preserved.  It took two years for all the surgeries and recovery time.  During each recovery period, my ex was sweet, considerate, helpful, kind, not angry, not laying guilt trips.  He did everything that needed to be done without asking questions or whining.

I was amazed, that's not the way he'd been treating me up til then.  Then he went back to what I was used to. That made me angry.  I can be violent when I'm angry, though it takes a LOT to get me there.  More so now. But then....  Well, he was angry because he couldn't fix me, I was angry because he took it out on me.  Our relationship took a turn for the worse.  It got violent, mouthy - a lot of name calling.  I decided that I didn't want my kids, then nine and five, growing up thinking that it was okay for a relationship to be like that.  So I cashed in an investment we'd set aside for Ben's college and moved out.   We got divorced, which happens a lot in marriages where one partner has fibro or another invisible illness.

Except for one incident that landed him in jail for a night, it's been better.

Then I left the country.

So here I am, five years later, trying to put my life back together after a serious bad call in judgement.  (Men are never worth not seeing your children for)

And I have now decided that it's time for me to write a blog about living with these pain conditions and the level of pain I do.  I'm pretty damn sure I'm not the only one out there who does.

I will try to write daily about my adventures and coping mechanisms (it's not all about the drugs).  It's taken me a long time and a lot of heartache to get to where I am.

I count my blessings every day, thus far I'm up to 24.  One of them is my ex-husband.