March 4th, 2017

Fibromyalgia

This isn't a Sims 2 post so much as it is a post about my life surrounding and outside of the game. The other topic of this blog as of late - my health - has created quite a stir, it seems. But this morning, I was sleepless. I "woke up" and ate breakfast. Scrambled eggs in a tortilla, almond hazelnut milk in coffee because it was cheaper than cream. It was beautiful out - that is, pouring with rain and muddy as all hell. Beautiful because these are the days my joints actually like me.

I was being driven to the head of Rheumatology at a building across the tunnel from where I live. I was ready, I had a list of my medications in hand like I was asked to bring, my special glasses if it got too bright out for me. It didn't. We drove for what seemed like forever, listening to Prince. Fleetwood Mac. Rush. My favourites, all on the radio for me to hear, strangely as it goes, and I didn't need my earbuds. I barely remember to take them in the first place most days, but I wanted to just in case my parents got on my nerves with their shouting.

Yeah, it was one of those appointments. A family affair.

The radio went out in the tunnel, as we approached it. A fuzz, soft and drowned out by the sounds of cars. The rain. I wondered if this was what it sounded like for fish under the water here. If the sounds were really the cars, or the Fraser above us. It seemed to go on forever. An idle discussion about men coming out of the small doors to the side and rumours about seeing them. I remember thinking about how it would be mildly terrifying to be stuck in here if there was traffic. The air quality would suck, I think. I wouldn't know. We were in heavy-flowing traffic, but still moving. And out again, on the other side.



I was hoping that this appointment would go okay. That he would be nice, that I wouldn't be scared of how high up we were. I'd developed an extreme fear of elevators, tall buildings, etc due to growing up in an era where tall buildings were no longer invincible. And also because the fucking thing vibrated. My mother came with me upstairs. I don't particularly enjoy my parents' company. We're very different people. My dad constantly wanted a smoke; a phone call for his automotive business. An American customer apparently wanted to get in touch. My dad keeps being told by this guy to look up Libertarian Capitalist pages. He said he was in some B-movie once, but that was "his only redeeming quality" as the second thing out of his mouth was a racist tirade. My dad sighed and left for the parking lot. Business was business, I guess, and the guy was annoying as hell to deal with. I know the type. My mother kept on getting texts from her sister, her work - a lot of drama in her personal life that she didn't care to have. She liked the view. She grew up here, in this city, and showed me her old stomping grounds, a shitty railroad crossing where she said she'd smoke as a teenager and skip school, which was just down the road. No, my parents are not role models, but I don't expect them to be. They're still fourteen in their heads, most days, I think. They seemed out of their depth. Lost.



Nothing could prepare me for how relaxing the office felt. Stitched cacti with smiley faces greeted me, a lovely receptionist with beautiful winged eyeliner. The cacti were apparently Japanese. She was very nice and had the same math disability that I did, as she did my measurements for height wrong twice. She muttered the name of it and I told her I had it too. I smiled and didn't fault her. She was new on the job and it was just one of those days. A Friday. Nothing ever happens of note on Fridays... right?

Being walked into the office after a handshake as soft as a child's ragdoll was an odd experience. The entire room looked like it belonged in a Maxis-made building. A pedestal sink next to a large, ugly bookshelf at a weird angle. Nothing matching, but, classy, or at least trying. He was new to this office and not quite settled in. He had only just begun accepting patients last year after a stint in another province. I had done my research.

After a lengthy examination, in a very relaxed environment, he seemed to question me. Become serious. Check my charts, and show me a few images on his computer. He wanted to know exactly where I was in pain, exactly how long I'd been like this. Everywhere, I said. Mostly in my arms. My wrists. I work with computers all day. He said he does too, and showed me his wrist rest. My shoulders hurt, I said. My shins, like acid. When I was seven or eight I was paralysed and screaming on a school field trip because of pains in my hips that kept coming and going. He looked saddened - he cared, deeply, and I could see it on his face. I usually hate tall buildings, but the view from his was comforting and nice. I could see an airport. It reminded me of home - we have an airport close to where I used to go to school. Across the street, actually. It's a museum as well. It reminded me of my partner, who taught me all about how to spot different planes and what the codes meant. The different classes and types of aircraft I could see. He typed and checked and asked a few more questions.

Then he turned to me.

"Your doctor's suspicions were not correct, and I see no signs of advanced arthritic swelling in your joints. I don't doubt you, but the problem is far more serious, and you do not present symptoms consistent enough with this for me to grant you that diagnosis. You do have very bad psoriasis, however, it is not the issue here."

"Okay."

What could I say? I was terrified. Terrified that decades of medical files, of doctors and tests and waiting and searching for answers - would be denied by the expert of them all. Every sick person has this moment of heart-stopping breathlessness, I think. It's the pause after "your results are -" and the beep on the test stick. It's that moment of oh fuck, am I just crazy?

I looked out the window again. I could not focus on the planes. I remembered how the other side looked over a car park and tried to think of how the cars didn't look real. Anything to take me out of this moment. I have a problem with panic attacks, and I felt ready to have one.



"However, that does not mean you are not sick."

Breathe out. Calm down. You're fine. Arm hurts. Arm hurts. Arm hurts.

"What do you mean?"

"Your symptoms are consistent with a very severe case of fibromyalgia. Are you familiar with that condition at all?"

"Yes."

Of course. A voice actor and friend of many years had - well, has - it. She can't even wear pants some days. It's too much for her to have fabric against her skin, her nerves are that sensitive.

He went on to explain that my complaints, and charts over the years, were consistent, entirely, with severe fibromyalgia. Migraines, brain fog, unexplained resurgences in depression and anxiety disorders. The sleep disorders, the stomach upsets, memory and cognitive issues that seemed to come out of the blue and make me feel frustrated to tears. But most of all, the debilitating pain, no matter what I took, did, ate, or thought. It was blamed on so many things - and disproven as many times over. He explained the condition to me, thoroughly and without sugarcoating it.

This was my answer. This man had shingles on the wall like you would not believe. I trusted his judgement. He had extremely good reviews. He was calm, and focussed on his job. Fibromyalgia. I kept poking it around my mouth with my tongue like it was gum, or a bit of food left over from breakfast. Fibromyalgia.

"I wish that I could tell you there was a vaccine, a cure, treatment." He looked distraught. Too distraught.

"But there isn't one," I added.

"No."

"Is there anything I can take for it?"

"There are two medications approved so far, in our country, that you can afford without extended coverage." I only have the basic coverage that the government supplies. I was used to hearing this. It was like seeing a beautiful piece of custom content but not having the requirements listed in order to install it. Except this content, was for my body, my life. I was just... so used to hearing it.

He named off the medications. I won't tell you. I don't want opinions - because I might not go on either of them. He explained that out of very many patients he had, the first one only worked on three of them and barely took the edge off. The second one, was an antidepressant in the same vein as one I was already taking, and switching it could cause me to become suicidal, and he knows that I have a history of that and did not want to touch it. He would leave the decision up to my doctor, he said.

I kept biting back the idea to tell him that she wasn't really a doctor, just a nurse practitioner because my main doctor had retired in January and was generally not a person I got along with. She'd pray over people. You can probably tell how well that went over with other patients. They phased her out with an early retirement towards the end. But I liked my new "doctor." She was young and patient with me. She didn't bullshit. She wasn't the kind of awful person who puts six year olds on a diet like my previous one did to me. She was the kind of person to let me experiment with my medications until they felt right. She was awesome. So I didn't say anything.

My mind stopped wandering. He was typing again. Silent. He then sighed and pursed his hands on his wrist rest.

"There was a study I was just looking up that I have saved on my computer, that I read. It's very widely studied. They took three groups - sedentary, ones who walked once a day, and ones who did heavy exercise like going to the gym. All of these patients had fibromyalgia."

"Okay."

I didn't like where this was going. Exercise makes me feel like crap.

"The heavy exercisers fared the worst out of all three."

"What?"

He gave me a look that said "I get this a lot" and continued. "Heavy exercise made their fibromyalgia flare up."

He told me that he'd ruined a 17-year-old's track dreams this morning. That light exercise - a maximum of four blocks a day, at the extreme end of things, walking only - was as far as I could go before he wouldn't recommend it. His brow furrowed as he said that he did not see improvement in his patients told to exercise as if they were completely painless. He said that realised that exercise and pain go hand-in-hand, and that a lot of people are called lazy for this. But resting was the best thing he could recommend.

I kept repeating the word "okay," even though it wasn't okay.

Pulling up more documentation, I could tell that he knew his work very well. He told me that people who recommended yoga were ill-informed and that a change in diet did not do anything for any of his patients. He said that he knew from my charts from regular check-ups that my blood pressure was fine and my other levels were great, despite not being very thin. He said that my weight was not a contributing factor and that this started when I was a very young child. I had just learnt to live with it. That the best thing to do was cope, and that learning to live with pain was like learning to live with any other disability. One may not be able to know what it's like to not be in pain, but once you learn to coexist with the fact that it will always be with you, you can make peace with it and work with it. He stressed acceptance - not a fight. No battles to be won here. Just coexisting with the lake of fire, as my aunt would have put it. It was permanent, at least, until they found a treatment or a cure. Many places were barely into medically recognising it, which is why I was never perfectly diagnosed.

His face had fallen by this point. He looked tired - defeated. This was his life's career and he was getting nowhere. He likened it to knocking on a wall and expecting to find a door. You had to keep trying, but the wall was so long and the door was so small that it might take the rest of our lifetimes to find the way through.

I got up. He got my coat for me. I could use his personal email, he assured me, and shook my hand again, seeing me out. The receptionist gave me her card. On the back was a saying, in blue.

"There are three things that I commit my life and practice to. Faith, love, and rheumatology. All of which conquers the impossible, and none without the others.

I kept it in my jacket pocket on the way down. My lips were pursed. I had the feeling of grey inside of my brain. That sort of antidepressant bland that gets you during moments when you know you could be spiralling down, but your dosage catches you. I was thankful for that. I didn't need a pity party right now.

My mother turned to me.

"How bad, out of 10?"

"Eleven."

We got out into the parking lot. She lit up a smoke near our car. The Libertarian called again. My dad took it and walked away.

"Let him do his thing, and I'll stand over here and you go stand over there so you don't breathe it in."

Standard procedure. "I don't care if I breathe it in right now."

It was true. I didn't. I had expected a treatment plan and had run into the highest expert that I could see right now, the one multiple people had tried very hard to get me into, telling me that there wasn't one. Fibromyalgia is and will be the brick wall in the road of medicine for a very long while, yet.

"So, what did he say?"

I proceeded to tell her. I broke it as straight as I possibly could to her. We're not a family of soft blows and covered punches. We're not affectionate. We don't pretend to be more than four people - my brother was at university early that day - living in a house together without much - or any - love for the other three.

"So, there's nothing we can do."

"I'm screwed. Basic bottom line."

She kept asking me to repeat, to assure her it wasn't as bad as he made it out to be. It was, I told her, he looked grave. Frustrated. Not at me, but, at himself, at this disease. She asked if I would ever need a wheelchair, or, if I would die. I said no, possibly not, but it would be with me forever until they found a cure. This woman had survived a brain surgery where she was kept awake due to the risks involved. Her mother dying of lung cancer. I knew she was trying to quit smoking, but, she lit up another. I didn't blame her. Diagnosis days - and I had many of them - were days of "screw it" and indulging in your vices. I wanted a drink. I wanted to go home and write. I wanted to watch The Wall again on Netflix. I didn't want to cry.

We got in the car, and I told my dad. He was off the phone now. He's not a person to react to such things, externally. He kept asking, can I get on disability, and I said yes, absolutely. We've been trying for a while now. My mother knew a woman about fifteen years ago with the same condition who fought for disability assistance due to the government not recognising the condition fully back then. I assured her that it was recognised now. He asked me if medical marijuana would help and I said, probably, but only to an extent. My dad knows people, I know that. But I told him flat out - the pain never quite goes away. My mother asked if it was genetic, and I said yes, but not in my case, as nobody else had it.

She was worried. She started to cry, I could tell. My dad had brought Kleenex tissues for her to wipe her eyes with. I was confused because her idea of caring about me varied from outright arrestable offences years ago to screaming at me for being in the same room as her when she was stressed out. She was not a kind person, but not a horrible person to be around. She's bipolar, depressed, and I could tell she was reliving what happened to her. Her mother. The idea that I was in pain constantly reminded her of that, I guess. I didn't feel anything negative. Just rational. Thanks, antidepressants. Before this the ones that I were on gave me horrible morning anxiety, so I was happy to feel like a calm, rational sea.

I kept turning the word over again in my mouth, and in my head. The idea of searching for a cure, of waiting, hoping, wishing. My dad said something about how he outwardly doesn't like to dwell on things and would rather just do them. My mother was more impacted. My dad and her mother were never close. His parents died years before I was born. He wasn't a family man.

The radio was off. The highway was a calming sea of rain, to me. The back bench seat was comfortable - it was the most modern car we'd ever owned. Not new, but, taken care of and smooth to drive. I kept wanting to text my partner. To tell them the news, that, hey, it was worse than we thought and I'm screwed forever. But it hadn't soaked through the colander of conscious thought into the deep drains of my subsconcious mind enough. It needed to be mulled around a bit more before I could tell them the news.

I still needed arm braces. I still needed medications - new ones, now - and an advocate. I kept reading through the brochures that I was given. They talked about everything with words like "controversial" and "not well studied" which didn't give me great hope. Most of all, I wanted to get home, and talk to my partner, and go to bed.

I wanted this all to be over. Incurable meant nothing to me. I was used to it. Incurable ADHD. Incurable personality disorder. Incurable this, incurable that. But this was new. I kept on thinking back, on the progression, of debilitating leg pains that caused me to nearly collapse in a supermarket while being yelled at to stop faking by my mother. Of not being able to get out of bed in the mornings from deep exhaustion and being called lazy. Of getting tired and sore from just going up and down the stairs a few times. I was valid. This was real. I had an answer. I didn't want it, but there it was, staring me straight in the face. I tried to remember a life without pain and just remembered that the last time I wasn't in pain, the game I loved hadn't even been released yet. I still had Windows ME. I was able to go biking and lay on the pavement of the water park near my house, a sorry excuse for a "playground" that only worked on the hottest of days, which was just an opened water main that kids could play and lay in. I could hike with my dog, and camp, and feel free. It was only months away from the screaming pain of that day in the same park, leaning over a sand pit about three feet deep that some determined kids had dug, and being unable to get up, screaming and crying for my mother to come and pick me up off of the ground because I thought that I was paralysed.

I worried that I would not be able to continue this blog. To find the energy to continue my machinima. My GoS posts. The things I could do, were slowly fading away from me. But I knew, that if I have been in pain since that point of my life, and I've lived with it so far, my life will not change even as it gets worse. My passions have not changed in 13 years. I know what I love, and I will continue doing it. Pain may slow me down, but it will not stop me. That man loves his profession so much that he has spent years devoting his research into a condition that has little hope and a grim prognosis for anyone who dares to dally across its path. And I love my passion so much, and have spent years fixing people's games, making custom content, telling stories, and he was right. I have to have faith in myself. I have to have love. And I have to have my passion.

Because if I have to live with this beast, I can at least teach it a few new tricks now and again.