Build your Joy

Build your Joy not Manage your Pain

Doctors talk a lot about "Pain Management" but this misses the point of many if not most chronic conditions. There will always, always be pain. It is unavoidable. 
What they don't talk about is how to make your life worth living. If your life is an endless tunnel of pain you "manage" until you simply lose the desire to try any longer it only ends one way; suicide. 
Suicide in fibromyalgia patients is 10 times higher than the average population. This comes from this "pain management" mentality. I can't manage my pain. Not really. I can't tell what is going to sideswipe me or when. What I can manage is my joy. In the Spoonie community we call it building a ladder. #buildaladder Building a ladder out of that emotional pit pain makes in your life. 
The theory is simple. Every day you work on building your own personal ladder. Each rung will be different for each person. It is in doing and achieving things that bring you joy, even if it is a small thing, a silly thing, a thing only you find amusing. 

It sounds childish, and it is is. Childish in looking for wonder, beauty, and hope where you are. It is hard. Yet this focusing on hope and making your happiness important is life saving. 
Doing things that make you just a tiny bit happier than you were before can make you look weird, I have taken to wearing on occasion a witch hat. Yet it cheers me up. I also love Pintrest and I keep and look for, and that is the key, positive quotes and beautiful photography every day. Other than GoT I have stopped watching a lot of the dramas and even watch the news in chunks because it lowers my mood. I also keep ooglie eyes (the self sticking kind) in my handbag and coat pocket. I love to walk and be in nature but with my back and hip pain it is difficult for me (though I do push myself sometimes because it is worth the pain for the joy) so I garden at my kitchen table. I have a wonderful collection of plants in my home. They really bring me joy. I talk to them everyday. Spray and spritz them with a cheerful "good morning my lovelies". 

In my quest to build my ladder I have accepted that my conditions are painful and disabling but if I want joy I need my cane, and shopping in a supermarket I need a wheelchair. This gives me more access to joy. It opens up the world to me that had shrunk to the size of my room, or even the size of my bed. My "prison" is now a garden. My shopping is now an epic quest and a way to vandal eyes (see what I did there) things in a fun and harmless way. (The taxi phone poster still has the eyes I put on it about 3 years ago in my local Asda). 
I can't manage my pain because it is subject to things out of my control, like a sudden shift in the weather. 
I take pain medication with me, sometimes I take it before a do a thing I know is likely to kick my arse. I have a little chemical heat pack (re-usable) I carry in my purse (heat, ice and rest are my bff's). I allocate "it's going to be shit" days. To rest and recover. I don't know if I do any more than I did before I just know it wasn't living. That I got and still get sometimes into some dark places. Yet I know I can build a ladder out. That it is my life and I will be as weird as I want to be because makes me happy. 

Food and Fads

Food and Fads

I am not a diet doctor or an expert in anyway, I just love food. Food it turns out does not always loved me. My Mum was both a raging hippie and terrified I'd get diabetes like my Dad. Sugar was the enemy in our house. We also had quite a low meat diet. At about 8 I became a vegetarian. I even avoided mainstream dairy (we had and milked our own goats) raw milk was what we had. 
If I was stressed I'd throw up and I had a lot of tummy pains but this was my "drama Queen tendencies" and "growing pains". I was also quite under weight and always, always hungry. They called me "Lucy bin" because if you couldn't finish yours, I'd eat it. 
My Mum was a fat-phobic, fat-shaming person. 
I began cooking my own food at about age 11. I think I'm a pretty good cook.
After I meet my super abusive ex and his family my gut troubles came back. They were all about pre-packaged instant food. They had cupboards of crisps and pop. I got sick again and my first dance with IBS started then. At Uni  we were living together and I was so sick I could barely keep anything down. I even had a gastroscope and my gut was really unhappy but no-one cared why. As I was leaving that relationship I meet someone (importantly someone thin and attractive) whom had sworn off  meat and dairy. She was ahead of the curve. And so years before it became trendy I became vegan again. 
I lost a lot of weight but my gut were no more happy than when I had been eating meat and dairy.
That is when my now husband and I got together. He was even vegan for a while, not that I made him. 
Then I got pregnant. I had several cravings but the big one, the one that was BIG and PRIMAL and unrelenting was meat. Steak to be exact. As rare as I could get it. 
And so I was back to eating meat, but still low to no dairy. Still lots of complex carbs, and a lot of beans (we were poor). I felt bad about it. Even meals that weren't veggie were low meat. A bit of sausage here, cured meats for flavour. It was never the primary focus it was carbs and veg. In fact vegetable stews and soup and rice based dished were sometimes all we lived on. 
My eldest daughter was lactose intolerant. So we had soy-based dairy alternatives. Yet as she grew older she was less and less irritated and so was I.
I've had fibro flares since my late teens and the pattern would be I'd get sick (whatever was going around) and then I'd "get the flu". My bones would ache, my fever rocketed, I couldn't move. I just got used to that.
Then I hit 30. 
I got sick and it didn't go away. I couldn't get out of bed. I could barely walk and to be frank most doctors didn't give a shit. So I decided to try not only a vegan diet again, but a raw one. This was the turning point. Because I didn't get better, I got a 100 times worse. I was doing everything "right" and my guts were terrible, and I was super sick.
Seven months in I caved. I caved and had what I swear I'd even been dreaming about, steak. Two things happened. I discovered I felt much better and I didn't spend the next day shitting. 
I struggled because sometimes I seemed to be able to eat something, then the next time I couldn't. I already made everything from scratch, even bread. I became an Omnomivore. I tried to eat a bit of everything. Yet I was frightened of fat, and meat. I limited those even though I often felt amazing after eating them because it was so opposite to what had been drilled into me my whole life. "Fat is bad". 
I struggled through. Shitting in pub loos, and public loos while trying not to cry as my whole body seemed to be retching covered in cold sweat. Embarrassed and confused. 
I don't remember how I found Keto. I'm not a "diet person". Except I suppose I am. I think we were at a health stall in the market and someone said "you should try gluten free".
So we did. It helped a bit. I wasn't quite as bloated. I started looking into gluten free and I guess that is how I found Keto, and by proxy AIP. 
I don't know if I could say I follow either of them strictly. Yet I have found low-carb, and higher meat and fat makes me fuller and less erratic. I can skip a meal and not feel like I am dying, something I'd never heard of before. (Now I'll just have a Bovril and wait until dinner.) 
I began to feel better. It wasn't and isn't perfect but it is much better.
At Christmas time I got a recipe book. It was specific to Fibro. It really helped, and I already had a lot of the store cupboard stuff like coconut flour, coconut oil, almond flour and so on. 
I still get bad guts sometimes.
It isn't  perfect but it is much, much better. 
My advice to my fellow fibro-warriors is this: no off the shelf diet will be perfect for you. Your health and gut will be unique. Start your diet changes small. Nothing sudden as this can cause a bad flare. Look after your gut flora. I don't just mean the stuff you buy in bottles (again that is generic not your balance). Eat fermented foods, especially if you can make them, from kimchi to piccalilli. Add bone broth and add more bones to your stew and such. Don't suddenly cut something. Cut it down first, slowly. Maybe your diet needs to be very different than mine. That is fine. Being sensitive to one or maybe many of the foods in the Belladonna family, like potatoes (I lived on spuds as a student, like really), peppers, chilli, and tomatoes is quite common too. I don't do well with regular studs, which blows my mind. Also raw chilli, dried isn't so bad but fresh of any kind messes me up. I can eat tomatoes but if they are under-ripe is doesn't feel good either.  It also explains why I have such an aversion to cigarette smoke. 
I'm fine with blueberries and aubergine (eggplant) but some people aren't. 
I don't react to eggs, but I do get mine from a local, free-range and organic source. I like a protein high breakfast, and fresh duck eggs fried over some salty greens is delicious. 
My diet is paleo/AIP/Keto ish. Some of all of them work for me. A hearty breakfast with lots of greens and fats (the horror) means I can live with a cup of Bovril and a snack of some nuts until dinner. I have to fast around my meds so by the time I can eat I ravenous anyway!
Be kind to yourself fibrowarriors. Spend some time gently figuring it out.

A memory of a girl.

A memory of a girl.

Can you understand, on the days I am wet sand wrapped in paper.
That some days the lava boils my veins as I press ice against my burning body in vain.
That the sound of metal wire travels up and down my arm in musical numbness.
That some days I am a barely contained storm crackling, hot and white around me.
Then there is the fog.
A limbic dream of awareness, thoughts ringing and glowing but obscured.
Or when the wave takes me.
When I am suddenly pushed into an umbral world.
I become a ghost, unable to speak, barely able to move.
Some days I am ordinary but sore and tired as though I danced all night in someone else's shoes.
Yet mostly I am some supernatural creature.
A ghost.
A storm.
A memory of a girl dancing.

I can walk without my cane.

I can walk without my cane.

I can walk without my cane. 

Leaning on a willing, loving arm, or trailing my fingers over walls and chairs. 

My knees are not always weak or painful, my hip does not always complain when it bears weight. 

I am not always dizzy or clumsy. 

Though without my cane I stub my toes more often, bump the same tender bruise on my thigh into the kitchen table. 

I don't fall downstairs, though that falling feeling in the pit of my stomach happens sometimes and I clammily grasp at banisters and walls, taking a beat before trying to continue.

Without my cane I tend to fall upstairs, catching my foot and stumbling in embarrassment. 

I can get up out of a chair without my cane, though it takes me longer and I might have to ask for help if it is really low.

 Sometimes just standing is painful and the cane does not magic this away. 

Sometimes just putting one foot in front of the other, just keeping going is too much. 

So much I can not think, let alone buy groceries and I have to sit in a chair, either on the outside on a bench, or inside with wheels and disapproving glares.
I can walk without my cane but it is so much more tiring. 

It is so much more frightening, painful and difficult than with it.
I do not use it for pity. 

Or sympathy. 

Or the sideways glaces of people whom have never fallen over nothing and bashed their face. 

In fact for the longest time I only used it at home where no-one would see, preferring to stay home than gather the glaces, and stares.
I can walk without my cane, but I shouldn't have to explain all this to you. 

I can walk without my cane but it makes my life easier, less painful, less confining. 

I can walk without my cane but I don't because I need it for when I can't and I never know when that will be.

I am a Superhero

I am a superhero

I am a total geek. I love comics and gaming. I love to read. I love to play rpg's when I can, and watch them often. Maybe that is why my dreams have always been like this crazy double life.
Today after getting up early and being human as long as I could, I simply had to sleep this afternoon. That is when it happens most. Sometimes I'm some strange faery creature flying around on a Pegasus in full plate in some seemingly never ending war. Sometimes I am in the past, or even present just watching things happen. Today tech heavy thugs in some strange college parking system (why are they always so weird?) "trigger" my super powers. All the electrical tingling in my waking mind became a static cloud of power. It hurt, like it always does, but it was like two whips of electricity formed and I grasped them. A field of energy deflected their attacks as it surrounds my body with a buzzing numbing force. Though some manage to hit. Bruising my knee and hip. An epic fight ensues. I finish the fight in flight beginning to float and fritz out.  I sink to the floor. Pick up my wooden cane and limp away.
I woke up relieved and then sort of bummed out.
There are no superheroes who have fibromyalgia. That can do amazing things, but then need a week in bed. I can't help but feel this is a loss. It would be a great. FibroWarriors often feel like they have ice about to explode from their bones, or like they are about to burst into flames, or like they can sense everything for miles around them. 
The cost of these powers is needing a cane, or sometimes a chair because the spin of the cosmos makes us so dizzy. The power running through us makes us so tired we can barely move for a few days. Our almost Deadpool like ability to take damage because well everything already hurts. 
I would love there to be a fibro superhero. Maybe even a super villain, I am British after all aren't we always the villain?
Of course I'm not sure how it would translate into other systems. In D&D it would seem like a curse. In Vampire, who even knows! In Callisto 6, I could be a hero. 

Fibro-yoga

Yoga

I am not an expert in yoga. I'm not a qualified teacher or any of that. I have been doing yoga long before I was bed ridden with this thing. I went to classes on and off since my teens, through my 20's and only really stopped when this bitch actually floored me at 30. For 10 years I got fatter and lost all of my muscle tone. September last year I had had it. I quit trying to do almost anything else and began trying to move my body again. Fibro-yoga is not pretty. In the beginning it hurt like hell. I try and do it everyday. If it isn't happening in the morning due to fibro fog or pain I feel really shitty I haven't. I do try to do it just before bed if I haven't managed it first thing. Through trail, and mostly error I learned a few things.

Keep warm. 

Add more layers than you think you need, have a blanket handy and some hot tea if you can. Cold is not your friend during fibro-yoga.

Don't try and tough it out.

Use blocks, extra mats, extra supports. I use two mats on top of one another and a foam kneeling pad to be able to kneel for any length of time. It is not a failing it is self care. If full yoga is too much to start with try chair yoga. Add all the cushions, blocks, chairs and so on, that you need. 

Expect pain.

It is going to hurt for a while when you first start. You have fibro, its going to hurt, period. However fibro-yoga gives you more good days and spoons down the road. If you have a thing like seeing a doctor that day, you can save your spoons, but know it will hurt more again when you come back to it. Ice for joints, heat for muscles. Start with 10 minutes everyday to start with and build up to 30 minutes or an hour. I didn't start slowly and I didn't use the blocks and supports and it messed me up a lot. It was my knees that were really unhappy to start with but extra support, mats and the like helped.

Start small.

I used to be super fit and I tried many times to do what I used to be able to do and it messed me up. I sort of do a pre-yoga warm up. Just moving joints like my ankles, hands and hips. I suggest starting with the hands and feet. Go slowly. Take a lot of rests and resting poses. Do the lesser version of poses and positions first and don't beat yourself up if that day you can't get it. Or can only do it once. Plus size, pure beginner and elderly routines can show you softer poses. It might take a long time for you to be ready for a class, and you might not have the spoons to get there, do the yoga and go home.

Breath.

Work on deep breathing. Working with and taking more breaths before and after a pose. I find it helps me tune in to my body when I spend a large amount of time and energy trying to ignore it yelling at me. Sometimes it can take a few breaths to get where I want my pose to be. As I do it first thing in the morning when I am basically made out of those cheap glow sticks (and crack and pop accordingly) and last thing at night when I am very wobbly, I try and do balances in the morning and deeper stretches at night.

Don't lock your joints, or over extend.

Better to do it smaller and less “full” than damage a joint. It might feel like a step backwards but it is okay to “walk through” it. This is not a performance. It doesn't have to look pretty. This about your breath and your body. I was a dancer, I like it look a certain way and I hurt myself a lot in the beginning trying to make it look "pretty". Some days just getting the mat out and my arse on it is an achievement. Some days I have to do it in a jumper, or topless, or with finger-less gloves on.  I almost always don't wear a bra because it hurts too badly to wear one. Sometimes I wonder what someone watching me would think, but no-one is watching and it is what it is. 

Use music.

Once you have an idea of a routine and poses don't stick to the pace of other people. I recommend Yolanda Pettinato's Simply Yoga as a basic routine you can modify and soften, CurveSomeYoga's beginners Youtube video, and go from there. I avoid “fibro” yoga stuff because most of it is insanely difficult and I can't do it, I couldn't even have done it before I got super sick and I was hella fit then. Kneeling on a wooden floor is isn't an option for me! Honestly the poses are truly nuts and I wonder if anyone with fibro was consulted at all!

There will be days you just can't.

Today is one of those days for me. The weather is blisteringly cold and my hip pain kept me up a lot. I'm on my period and having hellish cramps and even though I got dressed into my yoga clothes, I came downstairs, sat on the sofa with the dog and cried instead. I want to be able to do it, but I can't. At least not now. I have to find a way to be okay with that, even though I am definitely NOT okay with that. 

Still I am trying my best to be the FibroWarriorWitch.

“Don't be so sensitive.”

“Don't be so sensitive.”

I must have had this said to me a hundred thousand times in my life. It was a recrimination, an accusation. A declaration that I am the problem. The thing is I found a few ways. I found alcohol at a pretty young age. I wasn't a fan of drunk, but numb, oh I liked that. I also just avoided people. Books were pretty good for numbing too. Whole other worlds where I was someone else. Animals and outside were pretty good too. Yet it never fixed the problem, me.

I was super sensitive, I am super sensitive to everything.

You see about two weeks ago now, just before my 40^th birthday a doctor I was sure was going to tell me I needed surgery on my knee told me I have fibromyalgia. Don't be so sensitive, it takes on a whole new meaning. I have all this weird. Not the pain, that made sense to me. The itchiness, the figdetiness, the can't be in that shop because of the way it smells, the way I shop with my hands because very few textures feel right against my skin. My pathological hatred of scratchy labels. My love of old clothes. Things worn soft, or that smell right like old huge leather jackets. My love/hate relationship with shoes. I love them but they are torture to wear. I spent as much time barefoot and naked as a child as I could. I still do. I have a sense of smell like a bloodhound. It can be so intense something simple like a wet newspaper can make me sick. Of course these things were explained away, I was just too sensitive.

I have now listened to quite a few people describe how it feels. All and none of which are right to me.

This image is how I feel almost all the time. Like I have these tender spiralling tendrils reaching out from my body. I can feel the air pressure change. I can feel the temperature drop outside. I can feel the moon. I can smell and taste and feel far beyond what is normal. Sometimes it is overwhelming. It is quite often excruciatingly painful and it is exhausting trying to stay in a human shape. I still try not to be so sensitive.

I mask a lot. I put perfume on my gloves and scarfs so I can breathe this controlled smell rather than the taxi drivers hair. I listen to music or the sound of the ocean to drown out the other sounds, from traffic to my neighbours. I wear crystals, or carry prayer beads as much to focus my sense of touch as much as their other benefits.

I don't like swimming in pools with lots of other people, the water intensifies everything, as much as I love the water on my skin. I tolerate baths but I can never get comfortable, it isn't soothing. It feels like a wet coffin I get clean in. Much of my firbromyalgianess that isn't pain (and even that on occasion) has been seen as my person failing so often I believed it. That feels quite intense. It feels like I am finally seeing my whole life through this lens. 

In fact I was told as a child there was no such thing as pain, and if I felt it I had made it (martial arts can be a funny thing). Again feeling and more especially showing pain or weakness was bad, a failure. I fractured my collarbone as an 8 year old child and only the next day was I taken to hospital. 

How do I learn to acknowledge my pain and not drown in it? How do I learn to stop minimising my experience? How to accept help, when I can't walk or even stand?

How do I learn to be the fibro warrior witch?