When Things Don’t Go as Planned

If you’re anything like me, you’re a planner. You like to know what’s going to happen and when. Some (including myself sometimes) may call me a control freak. But really, I just like to be prepared. I thrive on routine, on knowing, at least generally, what a day, or even week, have in store for me. It allows me to budget my brain power, my energy, my time, and my money. I can have everything I need when I need it, and look forward to all the good things heading my way.

I think I’ve always been a planner. But when I started experiencing symptoms of Interstitial Cystitis (IC), and then of Fibromyalgia more recently, I really had to start planning. With the IC, I began using the restroom religiously before I left the house. I searched for all the bathrooms everywhere I went and planned out excuses for why I had to leave the room that had nothing to do with my IC. If I was going out with friends, I’d want to know at least three days ahead of time, so I could prep my body and and avoid all trigger foods. This helped me with my plan to have a good time.

When Things Don't Go as Planned

The same kind of things started happening when I my fibromyalgia symptoms kicked in. I began planning my days around my pain and fatigue. If I had something big coming up on a Monday, I’d spend the whole weekend in bed or on the couch, resting so I had the energy to do what I needed. I’d make sure not to plan anything for the days following, knowing I’d need the recovery time. Even now, when my symptoms are relatively under control, I find myself leaving my weekends open so I have time to just rest.

While all of this is well and good, sometimes plans don’t work out. Life has a way of being rather unpredictable. We can try our darned best to plan out every single day in a way that helps us manage our symptoms, and really just our lives, better, but the thing is, we can’t control it all. Life happens. So what do you do when you can’t follow through on your plans? What do you do when life has other plans?

When Things Don't Go as Planned

What do you do when things don’t go as planned?

The first thing I do is breathe. I have a tendency, as I’m sure a lot of you do too, to get super anxious when things don’t go as planned. So when this happens, I take a moment to just breathe. Breathing allows me to regroup, process what’s happening, and make a new game plan to make it through.

Next thing I do is reassure myself that everything is going to work out. Because, you know what? About 99% of the time, things work out, regardless of your plans. I find that incredibly reassuring. Even though I still like to have my control and have a plan, I can reassure myself that everything will work out simply because I have faith that it will. This step is a little easier said than done, because the anxiety can sometimes be overwhelming, but I find it immensely important. Even if you don’t believe yourself as first, keep telling yourself that everything will be okay. Because it will.

When Things Don't Go as Planned

A lot of times, my plans are thwarted by my illnesses. And this can be the most frustrating thing, because then it feels like it’s all my fault. Especially when it’s illness related.

Those of us with fibromyalgia completely understand how this goes. We often make plans when we’re feeling well, or when we think we’ll be able to prepare. But then something happens. Usually, it’s a flare of sorts, leaving us in extreme pain, fatigued out of our minds, and stuck in bed. Doing anything in this state is pretty much out of the question, no matter how bad we want to.

The guilt associated with cancelling or changing plans, or even just changing your own plans, can be debilitating in itself. It can make you feel like a failure and a disappointment, to yourself and your loved ones. That’s why the next thing I make sure to do is reassure myself that my illness is not my fault. And that I should never ever feel guilty for prioritizing my health, care, and sanity over other plans.

So whether things aren’t going as planned due to your illness, or for other reasons, do these three things: breathe, tell yourself that everything will work out the way it’s supposed to, and remind yourself that you have nothing to feel guilty for.

Why I’m So Open About My Fibromyalgia

I want to get personal with you guys today for a few reasons. First off, if you’re reading this blog, you’re looking for information. Or someone to relate to. Or for some hope. Because Fibromyalgia sucks and the journey can be incredibly trying. I also want to be personal with you because I want to make sure you know where I’m coming from with these blog posts. I want to make sure you trust me, because this community means the absolute world to me, and none of my words mean anything unless you get to know me and trust me.

So here we go!

Why I'm So Open About My Fibromyalgia

It All Started with Interstitial Cystitis

I want to preface this post a bit, as I usually do, by saying that being open about my illness is simply what works for me. I’m not saying it’s the right way to live life with fibromyalgia, and it certainly isn’t the only way. However, this openness has been the right choice for me, and I want to share with you exactly why that is.

I’ve always been the type to wear my heart on my sleeve. I was taught at a young age that communication is important, and that speaking my mind is not a bad thing (usually haha). I grew up in an environment where I was able to figure things out for myself, while still having the love and support of my family. My thoughts and feelings were (rarely) downplayed and I always felt like they were valid. So when I first started experiencing my Interstitial Cystitis symptoms at 16 years old, I was pretty quick to discuss it with my parents. While I was initially embarrassed by these bladder issues, and was uncomfortable talking about them, my family helped me feel a more comfortable talking about it, even if it was just with them.

I haven’t always been super comfortable sharing my illnesses, though. Especially since I developed Interstitial Cystitis as a teenager, and life is hard enough when you’re 16. I was embarrassed. I was frustrated. Why did something have to be wrong with me? Why couldn’t I just be healthy and normal? Why I'm So Open About My Fibromyalgia

Then, I went to college. And I started to stress about it even more. What if my professor asks me why I’m always running to the bathroom? What if that cute guy at the party sees me heading to the restroom for the fifth time this hour? But luckily, even then, I still had people I could trust to talk to. My friends, roommates, and family were all incredibly understanding and supportive. Even if they’d never experienced anything like it, they tried their darned best to be there for me, and for that, I am forever grateful.

Because of my support system, I slowly gained the confidence to embrace my illness and not worry about other people finding out. I got to the point with my Interstitial Cystitis where it was just easier to tell people that I have “health problems” or “bladder issues” before they ever had the chance to ask “you have to go to the bathroom again?” It was less stressful to provide the warning, so that I could relax and not worry about someone’s reaction if my symptoms hit. Which, in turn, eased my symptoms a bit.

Thanks to all of these experiences, all of the anxiety, grief, and relief I felt with my Interstitial Cystitis, I was better equipped to handle life with Fibromyalgia.

Why I’m So Open About My Fibromyalgia

So that’s a little background, a little more info on how I became so open with my illnesses. I went through the shame, the frustration, and the dread. I went through it all. But with the right support system, I was able to gain the confidence and acceptance to talk about my illnesses. However, that’s not why I talk about them.

Why I'm So Open About My Fibromyalgia

I talk about my Fibromyalgia and my Interstitial Cystitis because it’s my coping mechanism. It’s how I handle my day-to-day. I’m not exactly running up to everyone saying “Hi! I have Fibromyalgia!”. But if someone is involved in my day-to-day, is relatively close to me, or even just reads my blog, they know I have these illnesses. That’s because Fibromyalgia and Interstitial Cystitis affect me every single day. They’ve both changed my lifestyle immensely and shaped who I am at this moment. How could I not talk about things that play such a big role in my life, even if it’s one I don’t necessarily love?

Another reason I am open about my illnesses is because I know others can’t be. I know there are people who don’t have the support system of family and friends that I do. I know there are people who work in places where they can’t even hint about being sick without fear of consequences. And I know there are people who just aren’t comfortable with it. The thing is, I’m going to continue being open about my illnesses, my experiences, and my chronic illness journey because I want those feeling hopeless or alone to know there are others out there like them.

A year ago, I had just started medical leave from graduate school, I was depressed, and I was essentially bedridden. Today, I’ve graduated with my Master’s, I’m working full time, and my symptoms are under control. Had you asked me last November if I would ever get to this point in my life, I would honestly have told you I didn’t think I would. I was hopeless. And I felt utterly alone, even with a good support system.

Why I'm So Open About My Fibromyalgia

Then, I decided to start writing. And my illnesses became a part of my blog, just like they were and are a part of my life. I got the right diagnosis and medical help I needed. I even found FibroAid! What I’m trying to say is, you can be in an incredibly dark place, but life does get better.

And that’s why I’m so open about my fibromyalgia. I want to make sure everyone knows that this is some people’s’ reality. But I also want to make sure those of you living that reality know that there is still happiness to be found and hope to be had. And if you’ve been wanting to start being more open about your illness(es), but have been afraid to, let this be your sign to slowly start sharing. And if you don’t want to be open about your illnesses, know that if you ever need anyone, this community will always have your back.

Simple Self Care for Fibro Warriors

Simple Self Care for Fibro Warriors

Okay you guys. I’m not going to lie to you. As I’m writing this, I’m laying on the couch watching football and drinking a smoothie because my back is in so much pain it hurts to do anything else. Honestly, my symptoms have been pretty darn under control lately, thanks to my meds and my FibroAid, but I guess I overdid it this week!

That’s why I want to talk about self care. Not the face masks and spa days kind of self care (although those are nice too). But I want to talk about the self care that keeps your pain manageable, your brain relatively clear of fog, and your energy levels high enough to do more than function. I want to talk about the kind of self care than allows you to live your best, happiest life, despite this annoying, sometimes debilitating illness.

Simple Self Care for Fibro Warriors

Simple Self Care for Fibro Warriors

Prioritize Yourself

I know this inherently sounds selfish, but here’s the thing: it’s not! When you live with fibromyalgia, or any other chronic illness, putting your health and your needs first is sometimes essential. You know that saying “you can’t pour from an empty cup”? It’s one of my favorites, because it’s so true and so applicable. If you are run down, flaring, or just emotionally exhausted, you aren’t any good to anyone, including yourself. So in order to be a good friend, family member, employee, etc., you have to prioritize yourself and make sure you’re well taken care of.

Simple Self Care for Fibro Warriors

Go Outside

I don’t necessarily mean go on some big hike or kayaking or skiing or anything, though if that’s what you enjoy, by all means, do it. But in order to keep it attainable and reasonable for all us fibro warriors, I’m just talking about getting some fresh air. Go sit on your back porch or lay in the grass. Walk around the block with your dog or take a stroll on the beach. Do something that gets you outside, looking at the beauty of nature, and breathing fresh air. It will help your mood and your overall wellbeing. I promise.

Simple Self Care for Fibro Warriors

Take a Bath or a Shower

Bathing can sometimes seem like a daunting task when you’re in flare and fatigue mode. It can be a lot of work. But there’s something incredibly refreshing and rejuvenating about bathing. If a shower is too much for you (with the standing and such), try a nice hot bath. Throw in some epsom salts, maybe light a candle or two, and turn on a podcast or your favorite music. It’ll help relax your muscles and your brain, and you’ll feel like a new person. If showers are more your jam, get some fancy soap and shampoo to make it feel more luxurious. And I still recommend listening to podcasts. They just make everything better.

Simple Self Care for Fibro Warriors

Cut Out the Toxic

I’m referring to people, things, responsibilities, all of it. Anything that doesn’t serve you, your loved ones, or your interests, cut it out of your life. Or, at the very least, don’t extoll too much energy on it. Because absolutely nothing is worth your peace of mind OR your physical health. I’m speaking from experience here too. I had to leave graduate school three months before graduation because of my health. My physical and mental health were deteriorating so quickly (I got diagnosed with fibromyalgia a few months later), that I just could no longer continue the way I was going. So I went on medical leave and finished my degree this spring, when everything was much more manageable

Simple Self Care for Fibro Warriors

Do Something You Love

For me, it’s horseback riding, much to my body’s dismay sometimes. But in all honesty, it’s worth it for me. It’s my escape and it’s something I’ve loved and will continue to love for years. Even just spending time with my horse and giving him love, much like you would a dog, can be therapeutic. I think part of it is being outside, but there’s something about doing something you love that is incredibly revitalizing. That’s also why I blog. Blogging is my creative outlet and a way for me to articulate my thoughts. It’s a way for me to feel like I’m doing something (because I am), even when I’m in so much pain I can’t move. Blogging and my horse are what got me through the worst months of my health so far, and I’m not sure how I would have made it through otherwise. So find something that gives you a reason to wake up, a reason to get up (if you can), a reason to function. Because having a feeling of purpose and something to look forward to is the ultimate form of self care.

Simple Self Care for Fibro Warriors