Hey, guys! So this is sort of a follow-up on my last fibromyalgia post, hence the title. It'll probably be less organized than that one, but I hope it still makes sense.
But more importantly, not being able to do things like sports or hiking cut into my social life, a lot. Most of my social life outside of school is church-related, and usually, when youth church groups do activities, they’re pretty active. I'm constantly left out, a fact made worse by insistent questioning. The “but you don’t look sick,” the “I’m sure if you just try,” the “come on, it’ll be fun.” Sometimes, at first, I did give in. But the cost wasn’t worth it. It’s not a simple matter of the pain in the moment, though that has a significant effect too. Sometimes, I’d feel okay-ish when I participated. But the next day, and the day after that, my pain and fatigue would double, even triple. I’d be unable to do anything. By going out and trying to join the group, I broke the delicate balance that chronically ill people live in.
Sometimes people tell me it’s okay just to sit and watch. And sometimes I do that, but honestly? It’s boring and heartbreaking and unfun. Being forced to stay on the sidelines, unnoticed, while everyone else plays is not exactly something worth going out to do. Most of the time, it’s nicer to stay at home.
That’s not even mentioning transportation. If you don’t suffer paralyzing fear when trying to drive? Good for you. (I’m there, finally, but unfortunately, I lost a lot of skill during the time when I couldn’t handle it.) If you can afford your own car? Good for you. If you can walk to social events? Extra double goody for you.
It’s not that way for all of us.
The same situation applies to dating. I’ve been on four dates in my life, and the last one was nearly four years ago. A large part of this is because of my disability. When you can’t go out and do things, you don’t meet people. Even if someone were to get to know you through just classes, what kind of date are you going to go on? I’m happy with dinner and a movie, or something else involving food and sitting, but a lot of people aren’t. A lot of people don’t like hearing that they can’t go rockclimbing or whatever with you.
On top of that, there are so many little, daily things that you have to sacrifice in order to hold onto the big dreams as a fibromyalgic. Before, those were things like practicing cello as much as I needed, participating in activities that caused me anxiety and thus drained me further, like talking on the phone, washing my hair thoroughly. (Gross, I know, but that’s how it is.) Wearing clothing like half-slips, tights, leggings, belts, headbands, even most hair ties, causes too much pain. Also, cooking, always cooking, cooking is the worst. And people don’t understand it. They see you go to school and do well in classes, and they’re confused as to how you’re too tired to make a phone call. But like I said, it’s a balance, a trade-off. I have to sacrifice those things in order to stay in school.
Yeah, so, all of that? That’s how it was before my condition went off the rails.
Then, after I graduated, like every other time I returned home between semesters, my condition took another leap forward. (Why did that keep happening? A lot of complicated reasons that I don’t totally understand myself, including a delayed reaction to the stress of school, I believe.) So now, I’m losing my biggest, most important dreams. I have no chance to date, which means my dream of falling in love and having a family has stalled. In general, I’m extremely isolated (the Internet is my social life, hi Internet, hugs and kisses). My exhaustion means that I only have the brainpower for perhaps a chapter’s worth of writing a day—and that only if I got more than eight hours of sleep. Most of that limited intellectual energy right now is going towards the one, very easy online grad school class I’m taking right now, and I’ve been struggling just to keep up on that. That means I haven’t looked at any of my novels since June. My other big dream, being a bestselling novelist: kind of impossible when I can’t look at my manuscript without my brain dissolving into static and eyes going cross. This blog is what I’ve got to hang onto right now, when it comes to writing for myself. This is what I have, and I keep missing posts anyway.
More and more little things are vanishing too. I’m wearing half the makeup I was before. I can’t open food packaging without help. I’m able to go to the last third of church less than once a month. Most of the time, I watch TV and read books (more slowly than I used to), because those things don’t require the same energy that actively living does. I am constantly fading in and out of my own brain, forgetting words, too tired to think. A couple of weeks ago, I put the butter in the sink instead of back in the fridge and didn’t realize until Mom noticed it, maybe five hours later.
Do you know what that’s like, watching your life vanish? Knowing that you don’t have the power to get it back? Feeling humiliated every day by how completely dependent you are on others? (And that's coming from one of them darn millennials who already values interdependence over independence.) I am staring into an empty void where my dreams of family and a literary career used to be. The two things that matter to me most, and they’re gone, too.
It’s been a struggle not to allow depression to take me, too. I’ve been fighting it back, over and over, for the past year, this urge to just give in and stop trying anymore. When every breath takes effort, it’s a tempting choice. So far, however, I’m winning. So far, I’m holding on, but two months ago, I was having violent, suicidal thoughts. I’m back on track, but the last time I wanted to die that badly, I was fourteen and in the midst of the worst OCD episode of my life, and I swore I’d never go back there again. I hate that it’s come to this once more.
This is my reality. Then just for funsies, interstitial cystitis joined the party.
You guys know the gist. Last couple weeks of October, the constant, nagging pain in my pelvic region became unbearable. I have a hard time knowing when I’m really sick, thanks to the fibromyalgia making me always feel sick, but it got to the point where I knew it wasn’t that. I couldn’t sleep or eat because of the pain. After a couple of weeks and a lot of stressful trips to various medical places, I went under anesthesia for a cystoscopy and hydrodistension of the bladder that confirmed an interstitial cystitis diagnosis. Most likely, based on my medical history, I’ve had IC for at least three years. Luckily, the procedure also significantly reduced my pain level and allowed me to get back, basically, to where I already was. Which is better than not being able to sleep, but still not a lot of fun.
Now I’m on a new medication and a very new, highly restricted diet. As someone who has often used food for emotional comfort, I’m not enjoying that second part. Basically, I’m eating bread, eggs, and vanilla ice cream right now, because most other foods set off the pain again. It’s a difficult adjustment, and I haven’t even started figuring out how to make this diet healthy and balanced. How do you do that when you can’t cook? Already difficult. Now that you can only eat super bland foods? Seems pretty impossible. Even maintaining the diet, I’m still hurting too much to wear normal pants. Right now, it’s either gym shorts or large men’s sweatpants. #fashion
Basically, conditions like fibromyalgia are extra fun, because besides being chronic, disabling, and not very well understood, they have a lot of common comorbidities. Interstitial cystitis is one of these. So is irritable bowel syndrome. I have both of those, too, now. Comorbidity is interesting. Technically, it just means that you have multiple health issues. I tend to think of it more like this, though:
As you can see, in the last few months, I’ve realized that the overlap between the OCD and the fibromyalgia creates new comorbidities. Previously, I thought that my trich/derma was a result of the OCD only. Now, I realize that it also has a lot to do with my negative relationship with my body. That’s why I’ve struggled so much to get it under control even with the OCD and related body image issues managed. Self-harm is a way for me to interact with the body that has betrayed me, in a way that puts me in power for once. That applies to the fibromyalgia just as much as it does to body image. The more my body takes from me, the more I struggle to control the compulsion.
Knowing that allows me to fight it better. Knowing all of the conditions I have and the way they interact, it gives me a better chance at overcoming them.
Knowing that I have IC and having methods to better get it under control gives me hope.
The medication I’m on for the IC won’t fully kick in for three months, but when I get there, the pain in my bladder will probably stop causing trouble. I won’t struggle to sleep so much, I will be able to wear jeans again, hallelujah. I might even be able to ease up on the diet a bit. If I can find a way to manage the IC, I believe that I can find a way to manage the fibromyalgia again. I already have some ideas, and I have a doctor to work on them with. I honestly don’t know how long it’s going to take, or how much I’m going to get back, but I am fighting and I am hoping. I will do everything I can to have my two big dreams out in front of me again. I’ve already overcome so much to be here.
In the meantime, it’ll be rough. I hate, hate, hate being this sick. I hate how lonely it is, I hate how useless it makes me feel, and I hate how hard it is to explain to other people. I’m twenty-two, after all. I’m supposed to be at the prime of my life, not too sick to think straight, and fibromyalgia is invisible and complicated. That’s part of why I write these posts. The more people who know stories like mine, the more people there are who will understand when someone tells them that they’re struggling. The more familiar stories like mine become, the more that people with illnesses will be able to look out at the world and see themselves living. So thanks for reading these posts. Thanks for letting me share my story, and thank you for hearing my voice.
For now, I’m planning one task every day, one thing that I can accomplish. A blog post, a class assignment, a doctor’s appointment. It might be all I can handle, but if I organize it right, I can get things done. I’m going to take spring semester off entirely to continue my recovery, which will give me a chance to finally get to work on my own writing again. I’m so excited for that. <3 I can’t tell you how much I’ve missed creating characters and worlds and watching their stories unfold in front of me. Storytelling is my calling. I will never love anything as much as I love the way that stories connect us.
Pray for me. Wish me luck. I do dearly hope that I can make progress with my health again.
(An unconnected thought—sometime, search “fibromyalgia” on social media sites. I like to look at it on Twitter to try and find others who are experiencing what I am--the chronic life/spoonie community can be very supportive. But most of the time, I’m also inundated with a long list of various “cures” and solutions that get very old, very fast. I’m sorry, world, but yoga and healing crystals are not going to fix this. So maybe ease up on that health advertising, okay? That’s what doctors and medical science are for. For all the value I put in personal stories, a condition this complicated requires a lot of different solutions that vary between people and does not have a full cure. I share some of my treatment experience in this post, but I need you all to know that the same treatments do not work for everyone. They just don’t. What’s more, I do not want to see 500 tweets about marijuana, anti-inflammatory diets, and organic buckwheat heating pads when I’m looking for some commiseration. I am not here for that.)
Images via searchingforthehappiness.com and telegraph.co.uk.