Posted in Fibromyalgia

Chasing Ghosts

I’ve written so much about my struggles with fibromyalgia that at times I can’t imagine any new way to describe it all. Thankfully fibro keeps changing and evolving, constantly giving me new material! I know how that appears. Why is there always something wrong with that woman? When will she feel good? How can she have that many things wrong with her? How can it hurt if there really isn’t anything wrong? And those are just questions from my own brain, what the hell are other people thinking??!!

It’s near impossible to imagine pain with no cause (rebels with no cause are cool, though). I didn’t break my leg or get injured; my nervous system is injured which means you can’t really see my pain and it doesn’t appear to follow much rhyme or reason – but that doesn’t mean it isn’t real.

I have a new primary care doctor, recommended by my pain doctor (when does that even happen?), and he is wonderful. But I can’t help but to think he’s at the “why the hell did I accept this patient” stage of our relationship (even though I was told he loves a challenge, hence why he got me). If I had to be honest I would tell you that I feel emergency levels of pain several times a month, every month of my life. This is pain that my body knows is bad and needs urgent medical attention because something inside me has to be in the process of dying in order to feel this way. My brain, however, knows that this is just par for the course and that the last time (and time before that, and the time before that time) I went in there was nothing wrong with me. It’s like going on Maury on a regular basis, each time certain you have found the daddy of your pain baby, only to hear those words “you are NOT the father” and now everyone just thinks you are a pain slut.

I might’ve taken that too far.

*shrugs*

It’s embarrassing. At least it is for me. And if the attitudes are just right, or if I feel the attitudes are just right, i.e. judgmental, I can very easily be discouraged to come in for any kind of treatment for a very long time out of pure shame or simple self doubt. Knowing I can’t trust my body and that I can rarely tell if I’m actually sick, actually injured, or if I’m just chasing a ghost means I’m not going to trust my uncertainty with just any practitioner unless I absolutely have to. Which means I often end up in a bad place that was completely preventable had I just gone to the doctor. It’s a crazy, endless cycle.

This is my life. This is why I’m a total dipshit.

Every day I am monitoring myself for hints of things going wrong so I can stop them before they get too overwhelming while already dealing with whatever has already gotten overwhelming. This is why when I feel good I just go batshit crazy and do all the things, which must be terrifying for people because I don’t even know how to socialize anymore; I swear to sweet baby jeebus in his little tiny sparkly spaceship that the last time I escaped and tried to be social I sat down next to someone and said “I like pot-roast”.

I’m a grown-up, you guys. I’m in charge of a kid and a dog (and a cat, but we all know no one is really in charge of a cat). Someone let me loose on this world and thought I could adult and check my own engine oil and not explode microwaves and otherwise just basically function, and I don’t even know what a normal human body is supposed to feel like.

WHO THOUGHT THIS WAS A GOOD IDEA????!!!

Take me to your leader right meow.

Posted in Fibromyalgia

Breaking the Silence

Yesterday was my 6 year blogiversary here at Still Smihlen (thanks to my friend Rita for naming it!), and seeing that little notice really kicked me in the ass. I realized that I haven’t been here as of late. You know, here. Not necessisarily here at this blog or on my facebook page – which really sucks because posting ridiculous stuff for you guys is on my Top Ten List of Bomb Ass Shit – but, yes, both here at the blog and here in the normal, functional world. Since I checked out I have taken blow after blow after blow and each time I thought about chronicling my experience I just cringed. It was too depressing, too dark, and simply too painful to recount while I was trying to recover. It’s a bit like falling through an ice covered lake in subzero weather and someone offering you a glass of ice water once you finally pull yourself out. No. I need a blanket, dumbass. STAT.

And so I climbed into that blanket and just stayed there until I could feel my toes again. It took almost a year and a half. I’m not proud, yet here I am so perhaps I should be. Not everyone makes it back.

Writing is normally very therapeutic for me, but I haven’t been able to pick up my blogging ever since my last fall. I’ve tried, but the nagging feeling that I was avoiding something, that I was leaving something important out of the story blocked me every time. And so I am going to tell you this part of my story and just get it out there and over with in hopes of being able to move on AND in hopes that it will help someone else.

So here we go.

Let’s talk about Depression.

In high school I decided I’d be a great psychologist because everyone told me I would be a great psychologist. I remember one time being called out of class thinking I had done something wrong, but it turned out a peer was in crisis and only wanted to speak with me. Yeah. Pretty badass, right? I know. I know.

Once I was an adult (and not a psychologist lol), I really enjoyed studying and reading about psychology. And I’m glad I did because it really came in handy after I almost caused a severe car accident due to my irrational fear of spiders. That experience really shook me and I knew I had to do something about that fear before I hurt myself or others. So I read up on desensitization therapy and did it my damn self. Successfully. I cured myself of the fear of spiders and also learned that my mind is my own and I am absolutely capable of keeping it in check.

Fast forward about 20 years and there I was crying in my bed, isolated and hopeless, a prisoner of my own mind. I hadn’t posted a single thing on social media in several weeks. I’d try…but nothing would come out. Nothing.

Also, I couldn’t feel happiness for ANYONE.

New baby?

Meh.

Promotion?

Meh.

And creepily I had no reaction at all to people dying or any otherwise awful event. I remember saying to myself “I know I’m supposed to feel something, but I just don’t”.

I was depressed.

We tend to think of depression as sadness, but I’m here to tell you that it’s actually closer to nothingness. And that is quite terrifying.

I set out to help myself and quickly found that no amount of indulgence (I got a dog,) or ridiculousness (I watched only cat videos for several days on end), or self-help (allll the books), or meditating (books and apps and books and apps) was completely lifting me out of the dark, and no amount of telling myself to just snap out of it and feel things that I couldn’t feel was working. I needed professional help. So I called and made an appointment.

Going to therapy felt great. I appreciated having someone objectively examine my situation and explain exactly how I got where I was, by no fault of my own, and how we could improve things. Having a therapist diagnose my fibromyalgia pain as the cause of my depression was the biggest relief of all. Why? Why did it matter? It mattered because I didn’t want to have that flaw that caused me to not be able to control myself. I didn’t want to be weak. Please, anything but weak.

When you are fighting something like chronic pain or depression, you are also fighting stigmas. Mental illness and invisible illness are perceived as lapses in character or strength and control; a poor choice that you continue to make and dare to complain about. If your heart fails you are rushed to the emergency room and prepped for surgery; if your mind fails you are told to smile.

I have always fought these stigmas for others, but when depression landed in my lap let me tell you that my PRIDE took a beating. Everything I knew to be true about mental illness didn’t matter because I was stronger than that. Or at least I was supposed to be.
That pride nearly killed me once before so thankfully I knew better than to let it win, but that doesn’t mean it was easy. The mere fact that it was even an issue at all proves how deadly these stigmas can be.

I’ve done a lot of work. I’ve got a good mix of medication and therapy and coping skills to help ease the symptoms but I am not in the clear yet and I do not know when I will be. Also, I’m pretty pissed. I’ve been busting my ass to beat depression and the truth is that I may not pull through this until my pain is under control – which, based on my medical history, could be never. I honestly thought that if I worked hard enough I could just eliminate this issue from my plate. Learning that it doesn’t work that way has sent me into what I can only describe as rage.

I grieved my former life, I did the soul searching to find my worth beyond a paycheck, I found ways I could still help the world and feel satisfied with myself and yet I still ended up severely depressed. I was not prepared for the level of isolation and utter exhaustion paired with my pain and frustration…. but who could be prepared for that? And then, after I crawled out of that hole, I had to discontinue a medication that sent me into actual for real withdrawal. I’m talking cold sweats and spasms, brain zaps and nausea, and pain like I’ve never felt before. And I was right back in that pit all over again.

It’s not easy. And it’s been a non-stop cycle that I just can’t see myself talking about every day because I need to use that time to watch dumb videos that make me laugh and write ridiculous things on my page so that I do not hate life.

I have support. I have a great medical team. I have an amazing family, beautiful friends, and my child shoots sunshine from his butthole. I’m educated on mental illness. I have everything I need to recover but I have to accept that it is a very slow process that is much more like a rollercoaster than a marathon. There is no quick fix.

So there you have it. I don’t have much more to say about it other than if you’re going through something similar, just know you are not weak and you are not alone.

Now go watch that damn Sharkira video. That shit is hilarious.

(:

Posted in Fibromyalgia

Obama Alien Baby (tmi)

You guys, I am miserable. And mortified. And thankfully I can laugh about it and share it all with you so you, too, can laugh.

So, enjoy.

*tmi warning*

I headed to urgent care this past Wednesday evening due to this horrible, gnawing, burning, and sometimes stabbing and slicing pain in my stomach that had been going on and off for almost a month. I know, long time, but the first time it happened I thought I had a stomach virus. The second time it happened I stopped taking my antiinflammatories. And this time it happened I thought I was having an alien baby… Or just had an ulcer.

So I get there and they are very kind and most certainly suspecting an ulcer. They give me a nice cocktail of lidocain to drink in order to rule out acid reflux, and then they sent me for xrays to rule out whatever it was they were going to rule out with that. Probably to get a good look at the alien baby growing inside me…

As I waited for X-ray results, the lab tech came to draw blood, and for the first time in my life I got to experience what it feels like when someone hits a nerve in your arm while drawing blood. HOLY SHITBALLS!!! I felt that ish in my damn TEETH!

He was really nice, though, and was extremely apologetic, and he was humming “you keep me hanging on,” – the Vanilla Fudge version – so I couldn’t even be mad. We clearly had the same soul.

Long story short – Gastritis (figured), a UTI (wtf?), and…. wait for it… Constipation.

Wait… WAT.

Now let me just say that the idea that there is an X-ray of my poo-filled insides floating around in my medical chart is just more than I can handle. Also, the fact that my alien baby is really a poo baby is messing with my mind, man, and a bit more than I can handle. And I’d also like to say that three days on laxatives is CERTAINLY more than I can handle. But I do remember telling my doctor that I thought the Lyrica was causing me problems down there when we first started upping my dosage…

So…. Thanks, Lyrica. And Antiinflammatories. And… Whatever else. Obama? Can I thank Obama? Fine. Thanks, Obama. Whew. I already feel better.

Except I really don’t.

The one good thing is all the burning in my stomach is fine thanks to the famotidine. I’m so thankful that I can finally go back to consuming an entire jar of Famous Dave’s sweet and spicy pickles without any pain. Not that I’d actually do that…often…

We’ll see how this progresses.

To be continued……

Posted in Fibromyalgia, life lessons

Bottoms Up

Continuing on this journey of self care, I’ve hit a pretty big bump – since school let out I’ve been severly short on time and energy. And rightly so!  I love spending time with my child and my nieces and nephews!  Summer vacation is time for pools and parks and little trips or even just bumming around the house together. But summer vacation also means way less “me” time, and I quickly started to feel all that I had previously invested in myself slipping away as my old habits of ignoring ME came creeping back. Since I had such limited energy and time, I wondered what was the *minimum* I could do that would greatly benefit me right now…

And that was when I remembered this exercise tape (yes a vhs) I used to do years ago. I found it at the thrift store but then lost it. I remember a woman who used to be a ballerina, bad 80’s leotards, and hip swivels and gyrations. That’s it. But I knew it was really helpful and probably exaclty what I needed since the focus was on small movements. I started searching for it… Calisthenics? No. That’s definitely not it. Um… Oh yeah! Callanetics! Callan Pinckney!

So that’s where the little energy I have has been invested lately. For one hour every other or every third day ib gently pulse muscles I didn’t even know I had and stretch everything to point where I am yelling “oh my good this is fantastic!”. Weird. I know. What can I say.

I’ve done it three times now and can most certainly see benefits already (Callan promises 10 years younger in 10 hours and no one has said she’s wrong), and I plan to continue until my core is stable, my back is stronger, and my feet… Oh dear lord my feet.

It’s ironic that I started this program while having that horrendous foot pain I was telling you all about; it’s as if something inside of me just knew.

After some serious research into why the hell my feet were *radiating* with pain, I came upon this blog that completely explained exactly what was happening with my feet and how to fix it:

https://walkwellstaywell.wordpress.com

Yes. I have plantar fasciatis and a pretty serious pronation problem. And it hurts like HELL. For a while I thought I had a fracture or neuropathy or SOMETING life threatening, because the level of pain eminating from the bottom of my feet was just unreal. I was holding onto walls to walk! Plantar fasciitis??? Pronation??? No way. That can’t be it.

However, some of the exercises in the Callanetics video (I bought the DVD on amazon) were helping my foot pain and mirrored the advice on the site. So I *knew* this was both my diagnosis and treatable. I started in with the rest of the advice on the website plus advice from a running article I read and was absolutely shocked at the results.

But first let me just tell you that the most helpful thing was the most painful thing ever. I cried. I actually cried as I rolled my foot over a golf ball. A GOLF BALL. It was PURE HELL. It BURNED. My shoulers climbed up to my ears and I flinched with every roll. I kept at it for as long as I could tolerate that first night telling myself that it was worth TRYING just to see if it helps. It’s only one night of pain. It’s just one night.

I woke up the next morning and walked into my kitchen to start the coffee maker. I walked down the hall and went to the bathroom. I walked back to the coffee maker and began filling my cup, and that was when I noticed…

I wasn’t flinching, holding onto walls, or avoiding using certain parts of my foot as I walked.

It worked!!

I went back to the website and read up on all the exercises for pronation and plantar fasciitis and started them immediately. Every night now for the past week I have been stretching my calves, rolling golf balls beneath my feet, and strengthening my weak inner calf muslces. All of this on top of doing Callanetics for an hour every other or every third day.

The result? Today I walked barefoot with no pain *at all* today, and my knees feel SO STRONG. I can feel the muscle definition where before there was nothing. Also, my hip muscles feel both stronger and smoother – I don’t know how to explain it, really. My core is getting tight and strong, which is really helping my back. And I can walk like a normal person.

I have been telling my doctors for the past three years that I don’t know how to walk anymore. I kept saying that it just felt wrong and I needed help (physical therapy) to teach me how to walk correctly. Well, they didn’t really listen. But that’s ok because now I know why I felt like I was walking wrong – my calves were so tight that they were pulling my heel up causing me to not be able to strike my heel down as I walked, and also making the plantar fasciatis worse!  Doh!

After all these stretches and strengthening between the Callanetics and the advice from the website, my heels finally touched the ground when I sat on the edge of my bed for the first time in FOREVER.  All this time I thought I just had short legs!!!!  LOL. Nope!! Tight calves! Who knew?

It has certainly not been easy, though. The first night with the golf balls was hell, as I had stated before, but it got exponentially better each night. Eventually, though, I was left with this pain in this one small spot on my right foot that I was SURE was a stress fracture. I KNEW IT. It still hurt after all the golf ball rolling and stretching. It had to be a stress fracture.

But then I took a second look at the picure of the tendons on the bottom of our foot that is on the website. My pain was right where the tendon branched off…so…it could still be plantar fasciitis. So I went ahead and got the golf ball ready for one more painful experiment…

It felt like I was pinching nerves, hitting bone, burning, aching… I almost gave up but then I felt it – a little release! Holy crap!! But then I though wait… did I do something bad???? I picked my foot up and massaged the area and prayed to jeebus that I didn’t make anything worse.

The next morning I woke up and the pain in that area was SIGNIFICANTLY less.

So I did the same thing the following night, and it was a bit easier but still painful.

I just finished night three of focusing on that tiny spot, and things are improving. I no longer think I have a stress fracture – I think my tendons are just really, really, really pissed off.

So there you have it. It’s like I’m working on myself from the bottom up. Solving my foot problem is helping my knees which is helping my hips which is helping my back. It’s all connected.

I do still get mentally exhausted just thinking about how far I still have to go, but I have to remind myself that it’s not a race and every little improvement I’m making right now is a worthy investment that will help make my life better. It’s worth taking my time and doing it right – there are no quick fixes here.

I’m hoping by the end of summer to have significant improvement in my flexibility, strength, and all of my body mechanics. I am also really enjoying reading about Callan Pinckney’s journey of curing her own severe pain. I don’t think I’m going to cure all of my pain, but I do think I can reduce some of it.

Fibromyalgia is such an asshole. Anyone can have tight muscles, but fibro takes it to the next level and makes it significantly harder to deal with. You have to be super vigilant to keep your muscles from getting tight, yet you have to constantly work under your ability so as not to throw yourself into a flare. It’s a messy, tricky balancing act that sometimes send to have no middle to balance it all on; it often feels impossible.

Bit by bit. It’s the only way. I will just keep going and hope for change.

I guess we’ll see!!

Posted in Fibromyalgia

Haunted

Sometimes when I’m walking, I feel the ghost that haunts me. It’s a memory that has a predicted future, a ray with tangible purpose. I’m walking to an IEP meeting. I’m going to talk a parent at their home for the first time. My client is waiting for me at the park just a few more steps ahead. I can feel my work bag’s weight on my shoulders, gravity pulling down on all my paperwork and visual aids. God I love my visual aids.

Reality hits when I open the door. The ghost is gone, and instead of opening the thin wooden door to the office I’m walking through the tall, cold automatic doors of yet another hospital, another doctor’s waiting room, another disappointment.

The ghost never really leaves, though. I’m haunted by what should have been nearly every day, and I would do anything to get back there. This life? This one that I’m living right now? It was not in the plan and most days I’d rather succumb to the misty leftovers and imaginary continuation of my former life that plays in my head than accept what has really been laid before me.

I don’t think I’m cut out for this kind of life.

I want the old one back.

Posted in 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.

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The Letdown, smihlenfeld 2015
Posted in Fibromyalgia, life lessons

Going, Going, Gone

My friends say they think I’m “going through something”, and I think they are right. Well, almost right. I think I’ve already gone through whatever it was I was “going through” and have just been sitting here for a really long time waiting for the next part to begin.

Waiting.

And waiting.

And I think it has finally occurred to me that the next part just isn’t coming.

I didn’t know it wasn’t coming.

I didn’t think I would be where I currently am for very long. I though it was a speed bump in my personal road and that once I got over it I would be back on track and driving off into the sunset.

But I got over the speed bump and fell right into a pit. A hole. A trap. So where my life used to seem to have endless direction and possibility, it now is caged and resricted and small.

So, so very small.

I’m a big person. I do all things big. And well. And almost perfectly. I make goals and meet them, but mostly exceed them. I’m a person bubbling over with the desire to put out the world’s fires and choas with one hand tied behind my back and my toes using a beautiful teal fine point sharpie to check off my to-do list. Save the world? Check. Save it again? Check. Make dinner? Check. Save the world again? Check.

And then I win a medal.

Suddenly that all stopped, and I was just in a dirty dark hole with fire all over my body that, try as I may, I could NOT put out. Goals? My one goal was just to freaking FEEL BETTER and it was a goal I could NEVER MEET. So I lowered my goals, my expectations, my desires, myself. I went lower and lower and lower until I finally could cross something off my to-do list, and they were things like BREATHING. Check. Open your eyes? Check. Remember your meds? Uh… no….dammit! Get dressed? Kind of. Just touch the piano today. Check.

I’m certainly not winning any medals.

Everyone likes to tell me how strong I am. I say thanks. I don’t really mean it, because I don’t really care about my perceived level of strength. No one really knows what it’s like, so they really can’t accurately assess how well I’m doing. I know they know I’m fighting a war and that they want to show recognition, but I haven’t won a single battle. What is there to recognize?

My parenting? Yes. There is my one shining star. Thank you, thank you, check, check, and check. I can parent with one hand tied behind my back and my toe signing homework. I don’t win medals but I get that look in that little boy’s eyes that says “I love you”, and that is all I need.

But then I send him off to school, and I sit at home with Charmed, Supernatural, and Grey’s Anatomy. No, really. They are my friends. I see them every day and I am fully invested in their lives. They ask nothing of me and are just happy to entertain me and be with me. I pass the hours away with them by my side as I use social media to keep up with my real life friends who have all moved on, as they should, and are living happy, healthy lives.

Sometimes I play a little music. Sometimes I write. Sometimes I clean. Sometimes I cry because this is nowhere near the life I had planned, and I thought this pit was temporary and it’s NOT.

Do you hear me?

It’s NOT temporary!!

I didn’t know it wasn’t temporary!!1

I’m here, trapped. I do nothing, I have nothing, there is literally nothing satisfying about this life AT ALL and I DIDN’T KNOW!

I do know what I was supposed to be doing. I had it all planned out with my boss about a year ahead of when my son would first start school. Once he started, I woud no longer work the after-school hours that were pretty popular with my line of work. Done! Once he started school, I woud work only during the day and maybe a few evening hours when he was visiting his father. I would be in the schools myself, bridging the gap between in-home therapy and teachers on behalf of my autistic clients. It was going to be awesome. It was my dream job.

I thought I’d get back there eventually. Or maybe I would at least find something else that gave me a similar feeling. Maybe I could at least put out little fires somewhere? Maybe not save the world, but just save a small village. I could adjust. I could do a little less and work around my issues and still be productive and useful and awesome and…

Doctor appointments. That’s what I do now. I schedule and go to doctor appointments. And I come back home to Grey’s, Supernatural, and Charmed of course. And I rest. And I try to cause myself as little pain as possible. And I wait for my son to come home.

This is it. There has been no significant change in almost three years.

I’ve been waiting for three years.

Three years.

Holy shit.

I’ve been out of LIFE for three years.

This might very well just be IT for the rest of my life, and I don’t know how to make something better out of this.

What do I even DO with myself?

I thought I was going to get better…

I didn’t know.

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