Fibromyalgia · pain awareness art

The Cycle of Hope

Yesterday I wanted to call my sister and tell her how amazing I felt.  I had so much energy that it felt as though I would burst right through my own skin, and my muscles were having a hard time keeping up with all of the things I was doing, yet I managed to accomplish everything I had thought about accomplishing. “This is it,” I thought. “I’m cured. It was my thyroid all along. And now I have a new life. I can’t wait to do it all again tomorrow!”

And then tomorrow came.

I should know better by now, and I don’t mean to be bleak or morbid. It’s just a simple fact of life with fibromyalgia – everything changes, nothing stays the same. The pain comes and goes, the good days come and go. There is nothing constant but the changes, and you must do all you can to not get caught up in the current cycle, good or bad. Forgetting that the bad cycles end is pretty typical and very depressing, but it’s the warm glow of the good cycles that is the most dangerous; when you forget that the good ends, you risk losing hope once again. And that letdown is worse than any depression that any bad cycle can bring.

Hope is dangerous when you have an invisible chronic condition. Again, I don’t mean to be bleak or morbid, but it is the truth. When you get that taste of what life could be like again and you dare to allow yourself to believe it is really within your grasp and that you can actually hold on to it… Well, it’s like watching a loved one die over and over and over and over again when the pain returns, yet again, tomorrow.

Tomorrow. It’s a four letter word when you have fibromyalgia. Today is all you can really plan for because today you feel good enough to take the trash out so you better do and it anyone and everyone around you better coordinate and cooperate along with you to make this trash taking out thing happen, because tomorrow you might not feel well enough to even lift your coffee mug much less a trash bag, so it is of the utmost importance that it get done RIGHT NOW while you still can do it. And so it goes with hobbies, chores, outings, shopping, friends… Do it now, while you can, because there is no guarantee you will be able to do it tomorrow.

But every now and then a good cycle comes along that is just so good that you don’t even worry about tomorrow because you are confident that “This is it, I’m free.” It just feels right. You just know you will be returning to work. Your whole new life unfolds before your eyes, and you go to bed eager to wake and do it all again.

But when you wake, your hands and face are completely swollen. You can barely grasp your coffee mug or lift it to your lips. Pulling your clothes on and off is suddenly two steps away from impossible.  Your feet feel like two overfilled water balloons. And every muscle feels as though you spent your sleeping hours clutching onto a rope for dear life.

And that’s when you know that you haven’t been cured, you won’t be returning to work, and your little dream has once again died.

Hope is a very dangerous thing.

image
The Letdown, smihlenfeld 2015
Advertisements
Fibromyalgia · pain awareness art

Sound the Alarm

image
http://www.facebook.com/fibropainart

It was like I was putting out a fire; I was herding and scooping and splashing the painfully slow-rising tub water with my arms and hands and dumping it all over my body in a frenzy. The water was near scalding yet not hot enough, and the sloshing echoed endlessly within my head as I wished I had someone to help dump boiling water on me.

It all started after my chiro appointment, the most recent of many aimed at fixing my back. I went in walking like a t-rex and left walking like heaven, so when the tingling started in my lower back I thought it was good.

As I drove, the tingling went to my legs and began to feel urgent. When my legs started to hurt I knew I was in trouble. But then they began to feel like I was running through the flames of hell…

I describe my worst fibro flare as someone ripping off my skin and scrubbing my nerves down with steel wool. That was happening, but with added hot sauce, restless leg syndrome, and extreme urgency – all poured into the mold of “GET ME THE HELL OUT OF THIS CAR AND OUT OF TRAFFIC AND INTO A HOT TUB *NOW* BEFORE I KILL SOMEONE!!!”

I started deep breathing that reminded me of giving birth to my son. I began chanting a mantra to calm myself, “I’m almost home, I’m almost home, I’m almost home,” but as the traffic continued to not care about my efforts my mantra became “Move!! Move!! MOVE!!!”

It was a 7 alarm fire in hell.

I got in the door and stripped down and jumped in the tub. After the frenzied water flinging, I began to relax and sink into the water…

And that is when I began to see smells. I inhaled the scent of hot water and, suddenly, a colored aura in the middle of my field of vision appeared.

I got myself into bed and passed out in my birthday suit since I was too exhausted to redress. Thankfully, I woke up 4 hours later feeling pretty good.

But honestly, I have never felt such intensity in my body in my entire life. It was awful, and scary, and very concerning.

But thankfully, in true fibro fashion, it disappeared.

Fibromyalgia · pain awareness art

What it takes

image

Getting through a day can be such a daunting thought. The ache in my bones, the crust covering my eyes, the numbness through my hips, the stinging in my back and feet, and the inability to turn my neck have all vetoed any plans and ideas for the entire day, and I haven’t even gotten out of bed yet.

My alarm is abused, having been hit over ten times already. I was going to get up early and make coffee while throwing in a load of laundry. I don’t need to do the laundry now. I don’t even really need to make the coffee, but I do need to get up. My soul says “Maybe in ten more minutes I can do it,” and my body says “NO!”

I’m groggy. I wonder how long I’ve had this virus, this sickness – and then I suddenly remember, as if I could ever forget yet somehow I did, that it is not a virus. This has been going on for forever, and it will be here for forever.

The list in my brain is quickly whittled down to necessities only. No laundry, no coffee, no shower, no cooking. Truly, the only thing I need to do this morning is get my little boy up, dressed, fed, loved, and off to school. My body doesn’t want to but my heart and brain say it must happen, even though neither know how it will happen.

Someone is ahead of the game and has crept into my bedroom. He is giggling while moaning like a cartoon ghost. I playfully “Eeek!” as he jumps into my bed, but then my whole body cringes and spastically retreats when he places his elbow on my thigh and I release a pained grunt.

“Oh, sorry momma!”

“It’s ok, baby.”

It still hurts, right where he touched me. I could draw it on my skin with a marker, the outline of the deep, intense, burning. It continues as I crawl out of bed and begin laying out his clothes.

We manage well this morning. Even though we had to finish a last minute school project, we have time to spare. I find myself wishing I had gone ahead with signing him up to ride the bus. Yes I’m up and dressed, but my joints are popping in and out of place, my muscles are burning and heavy, and I am still unable to fully turn my neck. Driving does not sound like fun.

Our chatter distracts me from my body as I navigate us towards his school. The roads are fairly clear of traffic and for a moment I forget what street I am on, nearly missing our final turn. Once parked in our regular spot, which is as close as legally possible to the school, we start walking.

It is only about a half block’s walk from our car to his spot in line, but by the time I’ve made 20 steps there is a sharp burning radiating from my hips into the softness of my belly and the small of my back. In the middle of these pains, along their path, are tight barbed strings being pulled taunt with each movement. My son decides he’s going to hop and stop right in front of me, jarring me to a standstill and I don’t know if I will be able to start again.

Will. I will myself to move, and I do. But now my spine is cracking and popping, and with it comes the stabs of rib pain that threaten to reach completely around me. My hands, wrists, and forearms are tingling with a combination of burning, stinging, and weakness that I have come to call “gloves of pain”. We’ve reached his line on the playground, and all I can do is gently rock and sway back and forth, side to side, to ease my body.

I’m suddenly aware of everyone around me; parents who look fantastic. I wonder if they can tell that my hair hasn’t been washed in two weeks. I start scolding myself.

“Two weeks? Stacy! You can do better than this, you can. You should. How can you not wash your hair in two weeks?! They all must think you are nuts!”

But my son is happy to have me at his side and no one is truly staring at me. The babies hooked in the crook of their mother’s arms, scattered all around the playground, still pass by and they still like me, so, clearly I cannot be that hideous. And all of my son’s classmates have been talking to me since we arrived. So I reason that I have pulled it off for yet another day.

When the bell rings, all I think is how I can finally go back to bed. My mind is instantly pissed off as thanksgiving is being held at our house and there are a month’s worth of dishes to wash. I take a breath. I tell myself that I often get huge bursts of energy once my body has properly rested, and that if I feel this awful right now the best thing to do is rest. Everything will work out just fine. I don’t feel convinced.

I walk into my house and it seems that little bit of self assurance has paid off – I no longer see a huge disaster. I smile and find my spot on the couch. I tell myself I am resting and that as soon as the energy comes I will tackle the dishes bit by bit and that everything will be ok.

Before long, my fingers have found my sketch pad app and I have visually expressed how my body feels today. I’m proud. I sip my coffee and take many deep breaths. When I enter the kitchen to refill my cup, I am struck with enough energy to consolodate the dirty dishes and fill the sink with water, soap, and all of the glasses and silverware. Although “letting them soak” has been the demise of every good dishes plan ever, I still promise to come back soon.

What it takes to get through the day… it’s only noon. My left hand is nearly useless now as I finish typing this, despite my best efforts to massage the muscles and pull the joints into less painful positions. All of my morning pain is still here – neck, shoulders, chest, ribs, back, hips, feet.

I don’t feel sorry for myself, though. I’m not sad; this is just a pretty normal day and although I would rate my pain as an 8 out of 10, I know it could always be worse.

There is a very hot bath in my very near future – it wil ease some of the ache. I’ve started my back stretches but am really wishing I had a better, more in tune, physical therapist. I’ll continue taking my medicatons, but they are truly more preventative than reactive, meaning they won’t take away my current pain but they will continue to prevent other types of pain.

Mainly, though, I will listen to my body and try to resist “pushing through” just to get things done.

So… this is what it takes to get through a portion of my day.

(:

Fibromyalgia · pain awareness art

Pain & Shame

I will be honest – I haven’t been doing well. I mean I’ve been in many good moods and have accomplished somethings, but physically I am down. Washed up. Broken. While I miss my blog and cting with all of you, I just don’t seem to have the ergy or inspiration any longer –  but I wanted it back.

So, baby steps.

Today I feel shameful for being in pain. Maybe it is because of the attitude from my doctors. Maybe it is because do to cancel my weekend plans due to pain and I was really looking forward to going. Maybe it is because I’m alone. And maybe it is because physical therapy seems to be making me worse instead of better. I don’t know. But I do know I feel shameful, and this is what it looks like:

image

Do you ever feel shameful about your pain?