Category Archives: fibromyalgia

The thing that broke me…

There are a lot of things that I struggle with on a daily basis. The fact that I am able to life a relatively fulfilling life despite these challenges usually makes me feel like a fairly strong person. So when something breaks me I expect it to be something bad, really, really bad.

Imagine my surprise when what broke me this week was my ponytail.

If you have long hair I am sure you have styled it in the morning only to have your hair follicles hurt when you take it out at night. The pain is minimal and fades fairly quickly and I usually feel it is on par with hitting your funny bone, odd and painful but also a little silly.

It turns out with Fibromyalgia that is not that case. I have had my hair short for a few years since my doc told me it could be making my headaches worse and shorter hair could help – it didn’t, it just made me go through the process of growing my hair out again – so I haven’t had to deal with a ponytail for a few years. Yesterday I wore my hair in a high pony to go with a cute head wrap I had gotten to hold ice packs. I came home. I took my hair out of the pony and instead of a silly odd feeling of hair follicles relaxing I had the sensation of razors tearing through my scalp. It lasted for hours, this feeling of sharp cutting pain along my scalp. Then it subsided into the feeling of being horribly bruised. I still feel that way. Horribly bruised. 48 hours later. I can’t touch my scalp because I had the audacity to wear a pony tail.

What the actual fuck?

I looked up Fibromyalgia and hair pain online and of course it’s a common symptom, and oh joy, often comes with hair loss.

I lost it. I cried and shook and scared the crap out of my husband. Why?

Because I don’t even get my hair.

This fucking disease has taken my chosen career. It has taken my dancing in nightclubs and taking the kids to amusement parks and riding on roller coasters and working full time. It has taken my volunteering for numerous causes and my involvement in the PTA and my ability to think straight and unplanned adventures with my kids and my ball juggling and my night driving and party attending and my singing loudly to music and my sleeping well and wearing tight jeans and high heels and so many other things. It has taken and taken and taken and now? I don’t even get my hair.

I can’t have long hair and style it up in my pretty updo’s like I used to without setting myself up for days and days of intense discomfort. I don’t get to do french twists that set off my cheekbones and messy buns that are flirty and fun. I don’t get to decide how I want to look because the asshole disease that runs my life has decided to take that away from me too.

I am sure I will come to terms. I will accept this and find a way to cope but right now I only have one thing to say.

Fuck you Fibromyalgia.

Fuck you.

Up and at ’em…

Things are brewing. My paintings are gaining a modicum of popularity, a complete stranger bought something from my Amazon Handmade page, and Pirate Fest is coming up in about three weeks.

I am determined not to give in to the desire to flounder.

Having said that, I have something I have to do and I admit I don’t want to.

I have to, HAVE TO, treat my body better. I stretch a bit and walk almost every day, but it’s been years since I really pushed myself to exercise. This is really stupid of me because all the literature says the only thing that really helps Fibromyalgia is exercise.

In the past I haven’t exercised as much as I should because I was working. Now I am not. I no longer follow the 40 – 60 hour a week schedule I used to use as an excuse to stay away from the gym.

So my doctors have suggested it, the literature suggests it, I have time for it, why am I not shaking my booty?

I think I’m scared. I think I am afraid I will be disappointed or embarrassed by my limitations, which really is stupid because I’m the only one whose going to be around really so why would I be embarrassed?

Ugh. Maybe it’s just easier to walk and call it good. Who knows. All I do know is the excuses are gone, the medical situation calls for it, and if I am really going to try and manage my symptoms with minimal medication I have no excuses for not exercising my way to a more well managed disease.

So. Swimming twice a week. Crunches every day. 15 minutes of yoga when I wake up and 15 minutes before I go to sleep. Arm exercises with my wrist weights on when I am resting in bed. Then maybe, just maybe, I can get myself to run again.

Time to program the new Vivofit, set myself some goals, and get up and at ’em.

A new path…

A while ago I posted about the benefits of giving up.  Since then I have been dealing with my pain mostly on my own. I have a muscle relaxant to take the edge off my fibro-stiff muscles and an anti-depressant to take the edge off living with daily pain. For emergencies I have vicodin, but I can only take one a week max.

So far I am happy to report things are pretty good. I still hurt every day. I still get stiff and sore and feel my joints like no 41 year old should. I still have a headache that will never, ever, end. However, I have my life back. I no longer spend three to four days a week making my family drive me to different specialists and physical therapists. I no longer have the added pain of recovering from procedures that don’t really seem to work. I am no longer dealing with huge amounts of medication side effects as my doctors cycle through them trying to trick my broken nervous system into thinking it’s better.

Instead I have time to blog again. I work in the garden. I paint. I paint a lot. I read and play games and hang out with my kids and take my dog for long walks. I cook dinner and can sometimes clean the house. I kind of have a normal life again.

I’m still falling down on spoon management from time to time. Today I just had to paint a new Empathy Fish and while I felt good during the painting process I can already feel the stress my decision caused my body. I got ambitious and tomorrow I will pay. However, so long as I am patient with myself I can manage this illness with exercise, mindfulness, a couple of helpful meds, and art.

Art has become my solace, my healer, my place of peace. Somehow in the last month I have turned on whatever neuron housed my painting ability and I am loving every minute I hold a brush. My headache recedes into the background as I mix color and create shapes and play with light. Somehow I can paint, nearly every day, even though everything else takes careful moderation. Maybe I have finally found something that takes fewer spoons than everything else.

So I have said goodbye to my life as a busy lawyer and advocate with a million charity events and causes to attend and am embracing my life as an artist. I will create, if nothing else, a place of less pain for myself and with any luck a few pieces of beauty that bring joy to a small section of the world.

Today I write this to remind myself during the hard days that I have days where I feel like this. Where I feel hopeful and strong and capable. Days when I don’t feel like less than my old self. Days when I even feel like more than I used to be.

 

Beset…

Like many spoonies I spend a lot of my time trying not to look sick. It’s not because I don’t trust you to be sympathetic and supportive, it’s mostly because I get sick of my symptoms and want to be able to enjoy whatever event I am attending without paying too much lip service to them.

However, they are always there, hiding in the background and working hard to pull my attention away from your story, the movie, or the amazing meal you cooked. I have to chastise them like poorly behaved toddlers to keep them in line.

Which is why I hate getting sick on top of being chronically ill. That nasty, achy, flu-like, feeling you get with a fever is a daily occurrence thanks to my Fibromyalgia, so when I have an actual fever things suck.

It begins with me feeling like my body is filled with jagged pieces of glass when I move. Everything hurts. Then when I lie still everything hurts. (It turns out lying on jagged pieces of glass isn’t pleasant). Then I will get cold, really cold, deep freezer cold, but the second I pull up the blankets I am boiling hot. Lobster death hot.

At this point I will recognize something else is going on. I will take my temperature, it will be high. I will feel completely and irrationally betrayed by this additional invasion of my already sick body. Shouldn’t I get some kind of “Get of the flu free” card? I have a chronic daily illness, well two actually, shouldn’t that make my body a no fly zone for summer colds, winter flus, and the bacterial crap that hovers around polite society waiting to turn us all into wretched piles of indiscreet bodily functions?

I have become incapable of pushing through colds. I guess it’s because my daily push is so much work that adding the extra layer of suck renders me a wibbly wobbly mess. Every single thing becomes a personal affront to me. I cannot handle the smallest difficulty.

So today, on day two of fever and suck, I feel beset by my illnesses, both chronic and extra. I feel like a presentation exhibit for “What can go wrong with the human body”.

 

The monster in the depths…

You know that thin veneer of socially acceptable behavior we all wear throughout our days and nights? That veneer that keeps us from tossing our wine onto the shirtfront of the idiot at the cocktail party who insists on cloaking his misogynistic ramblings under the heading of “devil’s advocate”?

Some might call it self-control.

Well spoonies have masterful self-control. We maintain it with an iron fist when we are out of the house because chronic pain creates an inner voice that is almost always an asshole or a whiny bitch.

So we shut the fuck up and do our best to ignore the urge to burst into tears at the slightest inconvenience or collapse into a puddle of completely broken human being-ness as we give in to our pain and finally, at last, stop trying to pretend it hasn’t rendered us animals.

Well today my self-control decided to fly off to Katmandu for some sightseeing and I got a glimpse at the monster that lives in the depths of my soul.

Maybe it’s my medication. It’s possible that my inner voice is altered by the ugly addition of Lyrica. I’d like to be able to blame the handful of mind altering substances I pour down my throat twice a day. If not, my inner voice is a manic, terrified, angry, sick-and-tired-0f-the-pain, psychopath who wants to throw up my hands, crawl into bed, and never get up again. Ever.

With my self-control on vacation in the Adirondacks my inner voice is screaming: FUCK THIS CHRONIC PAIN SHIT. I GIVE UP!! IT’S TOO MUCH. MAKE IT GO AWAY OR MAKE ME GO AWAY OR INVENT SOMETHING THAT MAKES ME NOT CARE ABOUT IT.

Because it is too much. It’s too much. I am forty years old and I actually believe that today’s life expectancies are too. fucking. high. I don’t want to feel like this for another forty years. I don’t really want to wake up in the kind of pain that makes me uncertain I can get out of bed every day for another fourteen thousand six hundred days. That is too much of ask of me. It’s too much to ask of anyone!

It’s complete and utter unfair bullshit. It’s the kind of bullshit that makes me want to walk through my house slugging wine, pulling things off of shelves and throwing them against the walls. It makes me want to take a walk of complete destruction wear I inflict the pain I live with on every inanimate object in sight.

Why don’t I? Because then my fucking self-control would come back from helping orphans in Africa and I would have to clean it all up. Which would make me hurt more. Which is, again, fucking bullshit.

So why today? What is it about today that made my self-control hop onto the back of a bird and fly off to Borneo? My dreams.

Here is the story: I don’t sleep well. I never really have. So one of my many doctors discovered I clench my teeth like life depends on it all night long. He prescribes a night guard. I start wearing it. I sleep. I sleep well enough that I begin to dream.

Night after night I dream these freakishly intricate dreams about me as different people in different times. One night it’s a burlesque dancer who did the USO circuit in the 1940’s. Another night I’m a nurse who treats victims of Agent Orange. It’s different every night.

Two things about the dreams remain the same. One, I am always someone dealing with something that causes intense PTSD. Two, I always reach a point in each dream when I start to cry so hard I can no longer speak, even when I desperately want to.

I dream every night about desperately needing to speak about my pain and being rendered physically unable to do so. 

Every morning I wake up tense and afraid. I lie in bed and think about how fucked up the most recent dream was as I feel my consciousness return to my body and the pain filter in. It’s like putting on clothes. Pain in my feet, arms, hands, head. Stiffness in my back so bad I am not sure I can move.

I lie in bed as my body puts my pain on and I gather my self-control and my intention to make it through another day. To make something beautiful in that day. To love and to be loved. To feel the wind and the sun and the rain and to remember all the reasons I should do it all again tomorrow.

Today I needed someone else to take me to tomorrow. Today my inner monster was loud enough to make me give up. Today Dan came into my dark, dank, cave of bad feelings and despair and he held me there. He let me cry and listened as I shared my dreams and this sense that no matter how much work I do this is my life going forward and it has so much suck in it. He didn’t try to talk me out of my feelings or point out the good. He just held me. He listened. He took me for a walk. He got me out of the house. He helped me make a delicious dinner and ate with me while we snuggled and watched Game of Thrones.

When I was done my self-control was back. My desire to see another tomorrow, despite the pain that will inevitably come with it, was once again strong. My monster in the depths was once again locked away.

So if it is strong again why am I writing this?

Because your monster may not be. You might be hearing it tell you all the awful you have ahead of you.

Well, it’s right. You have a lot of awful ahead of you. You have pain and medication and doctor’s visits and missed opportunities and the feeling that you have to remain silent about it all.

You also have those things that make your day wonderful. That person who really sees you and still loves you. That animal that curls up next to you when you can’t get out of bed. That show you really want to see the end of.

So let your monster scream. Let the unfairness of it all come out for a bit. Cry.

Then shake it off, lock your monster away, and begin again. You have a long fight ahead of you but you are not alone.

 

 

 

Returning to my self…

There is nothing more disorienting than having your body fail you. When the skin and bone that has served you so well throughout your lifetime becomes the straps and bars of your own little prison you move outside yourself, gazing at your body and wondering how it is that it no longer fits.

For me, it was moving from endlessly energetic and strong to perpetually tired and weak. My previous sense of self was based on a cornerstone of health and strength. I could carry all the burdens, physical and non-physical, regardless of what they were because the well of energy inside me had no bottom. It was refilled magically like Mercury’s Pitcher. I never had to say no to anything I wanted to do, or anyone I wanted to help.

Needless to say it’s been a difficult transition.

I floated above my body for years, waiting for the health and strength to return to my limbs. Waiting for the invasion of illness to pass.

It hasn’t.

After all the specialists in the country examined me and shrugged with the calm recognition that there was little that could be done I realized this strange body with it’s aches and pains, it’s tiny pool of energy, and it’s punishing pain for overexertion was actually my forever home.

Ever since I’ve been trying to crawl back inside of it. I’ve been training myself to say no when I need to, when I think I need to, and when I think I maybe kind of need to. I have learning what experiences drain my energy and which don’t. For example, while I used to love large gatherings with lots of people they wear me out now. All the noise makes my head pound, all the conversations sap my energy, and all the scents trigger headaches. I have had to limit myself to a few such gatherings a year, and sit back and try not to be sad while I watch the pictures my friends post of all the events I couldn’t attend.

I can’t do the work I am trained to do. I spent hundreds of thousands of dollars on a degree, and thirteen years honing my skills, only to discover the stress of the career I’ve dreamed about forever is too much for my body to handle. I have had to recreate myself inside and out to find a way to occupy my time and contribute to the world without hurting myself.

I thought my body would eventually heal and I would once again feel like myself. Now I know the myself I need to feel like is a stranger. I have to get to know her better, welcome her in, accept her limitations, and allow myself to slip inside her sensitive skin and battered bones.

For she is me, and I am her.

By the bootstraps…

It’s been a little over a month since my new diagnosis and I have been trying to remain active. Moving around is supposed to help me feel better but I think it’s just making me tired.

I’m ending my days so stiff I can’t even turn over onto my side without excruciating pain erupting all over my body. I start my days with a pounding headache, tight jaw, and aching hands and feet.

While I am moving around I feel okay but when I stop everything seizes up. I am pretty sure I actually turn to stone. Well, highly sensitized stone. I’m just not sure how to fix that part. I recognize that moving around makes me feel better but I am failing in finding a solution that keeps me moving all the time. Maybe I need some sort of robotic chair and bed system that moves my limbs around for me while I rest so the overall effect is that of always moving but I still get a chance to sleep and sit the fuck down.

Until I discover/invent such an apparatus I am stuck pulling myself up by the bootstraps each day and convincing myself that moving around all day is worth being rendered painfully immobile at night.