Fibro math part 3

More about emotional deposits:

I really can't say enough about emotional deposits. For me, they are the biggest and best strategy I have. They are my life raft in a sea of dizzy spells, bowels problems, feeling headachy, achy, disappointments, grief, frustration, sadness- all the many negative aspects of this unrelenting illness.

It took me a long time to see that. It took me a long time to reach a place where I could use it as a tool.

The way I grew up, the culture I was surrounded by- wasn't so conducive to coping with a chronic never ending illness.  It couldn't understand any of it.  It couldn't accept it. Therefore i was unacceptable. So I beat myself up for years and years and years.  Killing myself to prove my value. I crashed and burned hard. I ended up in bed for three months. Unable to bath myself, feed myself, change my pjs myself.  It scared the shit out of me. It was terrifying.

I will never forget looking in the bathroom mirror. Seeing my ashen face- sunken eyes. I knew this couldn't go on. I decided to screw proving my worth and try to salvage my health.

I found a cranky 75 year old specialized with a heart of gold. He was very frank and kind. He told me I had to make some major lifestyle choices. That had to change my mindset if I was going to survive. He told me if I kept heading down the path I was on. There was a very high chance that my next big crash and burn would be permanent. That I would be in bed for years.

So that was the beginning of a path of learning, of searching. It's been a long one.

And one of the biggest lessons I've learned is ignoring your emotional health is unhelpful. Toxic. Emotional health needs to be taken care of- if you hope to live the best life you can live with fibromyalgia. I'm not talking about catering to your feelings. To me feelings are different than emotions. Feelings are those fleeting generally negative thoughts that are pesky. To me emotions are how you view your existence.  Your value. Your enjoyment. Your sense of accomplishment. It means nurturing your interests. Believing what you like/do/think/are good at/ is worthwhile. Worthwhile developing. It means being vunerable . Asking for help. Being realistic with your needs. Being able to be yourself. Letting go of unhealthy relationships. Be honest with yourself.

To survive fibromyalgia well, means creating the climate/culture of your life- that nurtures and accepts you- and your limitations. You don't need constant reminders of all the things you can't do. You can't constantly feel like your life sucks. Who can live that way?

 This requires carefully thought out choices:  about your expectations of yourself and others, your lifestyle, who you let in your life. And invest your precious life energy, instead of into deficits-into what really really matters to you. What really gets you excited. Deposits.

The more deposits you can find for yourself- the deficits of fibro- will seem less horrible.

After my mum died- living in her absence- the big hole of emotional pain she left in my life/heart/mind. I began to paint. I've always wanted to be an artist. So every Friday night- after my kids are in bed. I paint. I'm not that good at it. But I love it. It makes me feel good. It recharges my emotional bank. I would like to do it more and take classes. But right now all I can manage are Friday nights. It's worthwhile to me. So I'll keep doing it.

Let's say you love gardening but don't have enough energy for a big garden. Why not get a small garden box and do that? Sure. It's not the big beautiful garden you fantasize about. But it fits within your limits. Living within your limits doesn't mean not living. It means making more concise choices about what you need and want and enjoy. It means your emotional health is worth nurturing. You are still alive and able to enjoy what gives you pleasure. It means not giving up.

Fibro math 101 part 2

Deposits:

Deposits into the physical energy bank are hard to come by for the fibro parent. But I have a theory that there are different kinds of energy banks. Mental, emotional, physical and spiritual.

It's easy for the physical deficits to high jack all the other kinds of energy. I find my mental energy and physical energy are very closely linked. If I'm physically tired- my brain usually follows suit. My organization ability goes on vacation. Don't ask me to read anything complicated- like a recipe or  my new food processor manual. I usually ask my partner to make it simple and break it down for me. And he tells me what I need to know- after he's read the manual- " pushing this button makes it do that."

I find when my brain and body abandon me in my time of need- life becomes very intuitive. If that makes any sense. It's like a different kind of brain kicks in. It's more automatic. It just does and doesn't think so hard about out comes and steps.  It jumps and worries about the outcome later. I think it makes regular people think I'm odd. Flighty. Flakey. Disorganized. But it works for me.

I try to let go and accept where my body is at. I focus on breathing and keeping my anxiety low. Stressing out about how much stuff I need to do, in comparison to the level of physical energy I have-
creates stress. In the form of anger, frustration, resentment, depression, hopelessness.  Which creates more deficits.

After 24 years of fibro- I'm learning there isn't much point in going there. ( that lesson took me FOREVER to figure out) So instead I switch into what I call- " Surfer, creative, intuitive, right brained mode."

And somehow- amazingly- things still come together. Meals happen, kids have good times, bathroom is ok clean. I need a nap. But it's all ok. I'm not stressing. " It's all good dude."

Then my emotional energy is good. I've let go. Accepting what's happening. Deposits are going into the emotional energy  bank left right and center. Despite the fact my body feels like poop and my mind is swamp water. I can say, " yeah. I feel you body. Yes. I hear you. Ok go do your thing. But I'm going to be over here. Laughing at something funny my little girl did. Or enjoying this cup of chai.
Let me know when you decide you can do more."

It's a good place to be.

fibro mathematics 101 part 1

Deficit:

I've never been good at math. And it feels like I do a lot of fibro math.
 That whole energy envelope concept. Which really is helpful. To gain a sense of control.
It's a helpful tool. But man oh man- it can drive you crazy. Not only having to live that way. But sometimes life just takes too many withdrawls and there isn't a lot you can do about it.

If your baby regularly decides that they want to hang out from 2 am to 6 am. ( like my boy did regularly ) And your two  year old wakes up at 7 am. You can't sit and explain to them, " Now this whole situation is more than Mommy's body can handle. Can you go back to bed for another 4 hours? Otherwise I will be really sore and feel terrible and it will put me in an energy deficit for days."

Before kids energy envelopes were easier to manage. Work, eat, sleep as much as possible, try to exercise, fun.  If you over did it with a romantic woodland hike with your partner, or partyied too much the night before. You simply slept. Simply let things like laundry, cooking, errands slide until you recovered. Or your partner picked up the slack.

When you over do it with kids- which is pretty much a constant state- especially when they are under 5- you still have to keep going. You might be able to go into " couch parenting" mode. But diapers still need changed, feeding times, meals gotten, the constant child chatter, needing, fighting and getting into everything possible.

And this energy deficit, which is common to all parents and  funny parenting sitcoms, will be worse for a fibro parent. The stakes are simply higher.

Regular parents complain about a lack of energy and fatigue- but I'm not sure we are using the same definition. They still seem to be able to take care of their kids, clean the floors, do laundry and have a playdate.

When I talk about fibro parenting fatigue what I mean is: you are so tired you don't brush your teeth, change out of your pjs, or brush your hair until the kids are in bed.
You only get off the couch to do the necessities. Then have to return to laying down. On the floor or couch.Then once they are in bed, you drag your sorry ass into the shower, you can't remember the last time you shaved your armpits, you let the water flow over you and you are pretty sure you ruined your life by having kids. And that you suck as a mother and your children will grow up to hate you. Or they will grow up with no social skills because you have no energy for playdates. Even though there was no such thing as a "playdate" when you grew up. Then leaving toys all over the house, facepaint smeared on the walls and dishes all over the place. You stumble into bed, pray for coma state like sleep, and no interruptions of coma like  sleep, and hope tomorrow will be better. Consoling your self with the fact your children are at least still alive, reasonably clean, and know they are loved.

And tomorrow usually is better. After some good sleep.



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Meals

Meals are a challenge. If we were wealthy we would hire a jolly housekeeper to cook and do laundry. I  often fantasize about having a housekeeper.  I could spend all my energy doing fun things with the kids. Or doing hobbies- like knitting, sewing and gardening. She would bring us cool drinks and snacks on the patio. Sigh.

I actually love to cook and will often ignore the laundry to cook- so I can have enough energy to cook. ( I've given up wearing underwear anyway).

My philosophy of food is: it needs to be good. Without good food the emotional climate of our home can rapidly crumble. There are weeks where I am doing a lot of couch parenting. And we eat frozen pizzas, kraft dinner and peanut butter and jam sandwiches. And sometimes my partner has to cook. But generally I'm pretty picky in what we eat and how I like it made. So if my husband cooks I have to leave the kitchen. Otherwise an argument happens. Or  He tells (yells at) me to leave.

It's hard giving up control. Sometimes. Other times you're so tired- there is no energy to care or protest. ( "that's too much oil!")

I try to keep it simple. Pininterest has been a big help finding recipes.
Crockpots are a miracle. And our rice cooker.
Often I will make dinner  the night before. Especially if it's a little complicated. I have trouble concentrating when the kids interupt me during the day. With fights, melt downs, creative projects, whining about how hungry they are after school.

I really believe that plastic is evil. I really wish I had more energy to find local foods that I can can and freeze. I hate the amount of packaging on our food. When I go grocery shopping I try to opt for glass containers. I don't put my veggies in those little plastic bags.

When I have the energy I make our own yogurt. Cutting down on more plastic.

Plastic is evil. It never goes away. It's filling our oceans. Read about it.

I often wish I had more energy to bake our own bread, can stuff, grow a garden.

But I do my best

We used to grocery shop once a week. But it took a lot of mental energy coming up with meals for a week. Now we go every couple of days. There is less waste- and I can gear meal making to my energy levels.  Since my body is so unpredictable.

Our diswasher broke a year ago. Not only are my hands raw from my eczema acting up from the hot/chlorine/soapy water, but it's taking too much energy. I think our next purchase will be a new dishwasher.

I think meals are a big source of comfort and stability when so many things in our home feel chaotic and unpredictable. I will neglect a lot of things- just to make sure a good meal is on the table.

Neglected

This poor blog has been so neglected. My kids are now 5 and 7. They can do a lot of things for themselves now. Which means I might have enough energy to try this again. My youngest started school full time last fall. Which was something I sometimes doubted if we would survive to see. On my son's first day of school- my husband and I high fived each other in the school parking lot, and then went home and had a nap. ( Husband works shift work) I was just tired.

I had all these BIG plans with the kids being in school. But the summer before school- my mum's cancer came back. Life went on hold and revolved around her needs. We had 7 months together before she past away. 

I'm not sure if I have the words to describe all that that has been. If you've lost someone dear to you from cancer, been a confidante and companion in their slow decline and death. Then you know what it's like to have your heart ripped out repeatedly.

The overwhelming anticipation grief of losing them- then the shock of final good bye. Then the day to day grief of their absence. The missing them gnawing at you.

In the middle of all that my husband had a crisis. And was diagnosed with clinical depression.

Which was good. But he went a long time undiagnosed. Which had placed a great strain on our marriage. ( to say the least) There has been a lot of effort to rebuild between us. A lot of very honest 

converstions.

I've had fibromyalgia for 24 years now. I've been married for 13 years. And been a mother for 7 years. 

My life has been difficult. Everyone's life is difficult. Filled with challenges. Mine has had some whopper challenges. Which I hope has made me a better person. But sometimes I'm a mess. And sometimes I feel on top of the mountain. Some days are great. Some good. Some a disaster.

Today was a disaster. Lack of sleep, pain, dizziness, frustration, fatigue,headache- a big emotional blow up with my husband- who is also tired and fed up.

Last Monday on the other hand,  was a happy sunny adventure to a strawberry farm- loading up with farm fresh strawberries. Playing games in the car. Big fluffy clouds in the crystal blue sky over rolling farm fields.

That is the rollercoaster of life with fibro. 

To survive the rollercoaster takes a f'ing lot of grit and determination. Especially with kids. When you feel dizzy, but have to make dinner and somehow get to soccer, or gymnastics and you haven't had clean underwear in three days. ( I think I might now prefer to go without now) because you chose to have a playdate instead and now you're mentally/physically drained- but it was fun, and somehow you're not supposed to snap, " go away" to your 5 year old who keeps asking " watch this Mom! Watch this!" while your trying to create a healthy meal.

Sometimes I imagine I posess the  mental and emotional toughness of a navy seal. Or soldier. Or emergency room doctor. 

Sometimes it makes me impatient with people who complain over trivial stuff.  Or don't do things  because they " feel kinda tired."  My sympathy for that kinda thing is non existent. Instead I just don't say anything. 

Having fibro forces you to be a creative problem solver, to accept a certain " out of controlness", to be ok with whatever has to be, to be emotionally honest, to live outside the box.

It's not traditional parenting. It's a lot of improvising. It requires a high level of communication between you and your partner. It makes you vunerable. It makes you say thank you a lot.

It makes you have to listen. To have empathy. To remember to breathe. Finding humour where you can find it. It's lonely. It's demanding. It often feels beyond my ability to navigate.

Those are all really good tough things. They are real things. It is a real love.

There is no room or energy for the mainstream perfect plastic ideal in our home. This shit is real.

This is parenting with fibro.

complicated

Fibromyalgia complicates everything. If you have found this blog and are reading it, then I'm sure you get what I mean.  The everyday becomes a kin to climbing a mountain.  Finding clean underwear,
getting dressed,  cooking,  somedays reading or remembering a phone number, or remembering how to get to the library.  Employment and relationships.  And if you have all the nice little side conditons that come with Fibromyalgia.  Like sleep issues, IBS, TMJ, that bladder condition only nurses and specialists can pronounce- cystis what?  Even the most basic body functions are complicated.

So just like everything else,  having babies is complicated. Lots of unknowns.  From how will it effect my body to will I have the energy to go through labour?  How will the recovery be?  Will the lack of sleep make my symptoms worse?  Should I get off my meds?

Issues perhaps healthy mothers don't have to think about.

I remember feeling very alone in my pregnancies.  Alone in my fear.  My doctors were really kind. But ultimately didn't have much experience with women with fibromyalgia.  My body was expected to react and heal like a normal woman's body would.  But my body doesn't behave normally.  Then when my body didn't act normally- there wasn't much leeway in giving me more time, or space, or understanding.  Or medication for pain.  Some nurses made it clear that they thought I was a bit of a baby. It made me feel very alone,  and couldn't wait to get home and in my own space.  It sucked having to endure the physically craziness of birth and people's bad attitudes.

I think women who have other disabilities may be more supported in pregnancy and birth. And have access to help.  Like women who are blind or in wheel chairs. Although I don't have experience with that- so I don't know.

I am blessed to have a very supportive husband.  He isn't afraid to dive into changing diapers, sacrificing sleep even though he works too, cooking meals, scrubbing the toilet and floors, feeding and scrubbing bottles.  He's a dream man.  And he has a really good sense of humour and he thinks of my comfort and needs.  Not sure how I landed him,  but he seems to want to be here with me despite the complications.

And my mother came over every morning for over a year to help.  Mornings are a disaster for me.  My ability to functon is really low.  My mum was a support in everyway.  Emotional and physical.

And my in laws really are amazing.  I don't think I could ever ever explain how amazing they have been to us.

To have babies with fibromyalgia-it really helps to have help.  The more help you can have the better I think. Even with all the help I had- it was tough.  Very tough.  Especially my second child.  I had some big complications. And it took me at least two years to feel somewhat normal again.

We really thought long and hard about starting a family.  At least three years. We had decided not to.
But neither of us were happy with that choice.  We really did want children.  So we were highly committed to come what may.  To making it work. No matter what.

And there have been many times when I have thought and felt like we were stupid and made really bad choices. Then many more times when I have thought- how wonderful it all is. How beautiful our children are. How I am glad that we have sacrificed for them. How much joy they bring.  And I am very glad and blessed to not have missed out on this experience.

So it's complicated. But not impossible.  It's a bit of a crap shoot.  You don't know how you'll feel. I felt amazing with my first and horrible with my second. Having babies isn't a fine science even for healthy moms.  You just don't know- until you do.

welcome

This is my blog. Being a mother is a full time job. Having fibromyalgia is a full time job.
So being a mother with fibromyalgia is like having two full time jobs.
 That's a lot of work.  Trying to juggle the needs of everyone in our family takes a lot of problem solving skill, thinking outside the box and planning. It's not easy- it can be frustrating, exhausting, sometimes funny and amazing.
It takes a ridiculous amount of communicating and teamwork. And emotional honesty.
Most days are about survival. But occasionally the gods smile upon us and the stars align themselves and some magic happens.
There is a constant under lying element of stress- which I think only a family with an ill person- can understand.
This can make us feel alone. Although we know others are out there- like us.  We are just too
tired to meet them.
So it is my hope for this blog- to share what it's like in our little corner of the universe.
Maybe it will help someone else. Maybe it will be a comfort to someone and us. Maybe we might learn something.
So farewell 2013, and here we come 2014!