Category Archives: Chronic pain

Advice from a Spoonie (part 2)…

Unfortunately my Trigeminal Neuralgia has reared it’s ugly face again and I am really struggling with pain. Not the heavy rhythmic daily pain of headache but rather the sudden, intense, mind-numbingly awful face pain that rips into my cheek and sets my gums on fire, lasts an eternity of minutes, and then fades as suddenly as it arrived leaving me a quivering mess of aftermath.

Like most spoonies I am very good at going still and keeping my face fairly passive and not showing my sudden and intense desire to curl up into a ball and tear at my face and scream because I don’t want to freak anybody out or have to answer EMT questions or for that matter any questions while I am experiencing that kind of pain.

However, as I descend further into more frequent bouts of this particular hell I will be hiding out in my cave more and more so I can curl up in a ball and make all the animal noises without freaking anybody out. Which got me thinking about my cave and the small, low spoon cost, things I do on a regular basis to make it my safe place. I thought I would share those with you.

  1. Don’t expect perfection. My space is often a bit messy. After all, I don’t always have the energy to keep it picked up and clean. I forgive myself the un-put-away slippers and pillows and pajamas and the unfolded clean laundry when I can’t get to it. However, the following are things I do to make my feel more comforted by my space when I am stuck in it for a while.
  2. Make the bed. It’s a rule for me. My morning ritual includes making the bed because there is a high likelihood I will end up in the bed and I want to feel as though it is an attractive and comfortable place to be. I also have leg rest pillows and a throw blanket on the made bed to support me in the event I end up there and to keep me warm without having to unmake the bed.  Also, any bedroom looks nicer when the bed is made, regardless of what else is going on with it, so you make a big impact on your space with very little effort.
  3. Fold the laundry. If you have the extra spoon, fold and put away your clean laundry. It always gives me a sense of satisfaction and helps me feel better to not have an obvious example of my lack of energy staring at me from the corner of the room while I am convalescing.
  4. Put your dirty clothes in a laundry basket out of sight. Once you have an empty basket put the clothes that have been dropped on the floor or a chair in the basket and then put it in the closet or another room. Out of sight. You clean up the space you are stuck in without leaving another looming reminder of the laundry you must now do in the corner of the room while you are convalescing.
  5. Have a distraction close at hand. If you read while you are in pain, have a book or two, if you crochet, have a basket of yarn. I have a small end table with a basket of watercolor pens and some paper next to the bed. That way if I am starting to feel better but should still really be resting in the aftermath of a pain spike I can take those out and do something without spending too many spoons.
  6. Scent and lighting. This one is very personal as many people are triggered by scents and light. I have a low wattage warm lamp I can turn on when I am having some bad photophobia that casts a cheerful glow about the room. Sometimes I can’t use it, sometimes I can. I also have NagChampa Incense that I burn. It is one of three or four scents that don’t make things worse for me. I find the pleasant scent and lighting makes me feel as though I am settling in to relax instead of settling in to suffer.
  7. Medication and Water. Find a way to keep them next to you. I have a pitcher of water in the room so I can refill my glass with very little effort and only need to ask for help refilling the pitcher. I also keep my medication next to the bed in an attractive box. Within reach but not likely to fall over while trying to retrieve one particular bottle, thus requiring me to get up and clean up another thing.

That’s it for today. It’s cold and snowy and my face is trying to kill me so I think I’ll curl up in my space and rest a bit.

I wish you a low pain level day!

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Broken… a haiku

muscle memory

sense of who you are inside

liars, all of them.

 

new limitations

heartbreaking in their number

pull you down, down, down.

 

despair becomes you

inner screaming, outer smile

hide it from the world.

 

learn to be broken

make mosaics of your self

see beauty in cracks.

 

be your creator

build something new within you

make your broken whole.

 

new self emerges

introduce yourself proudly

you have survived.

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.