Working while Living with Fibromyalgia

Working while Living with Fibromyalgia

Working while chronically ill is tricky. And it’s tricky to talk about too. Which is exactly why I want to write about it. The thing is, when you have a chronic illness life fibromyalgia, working can be a necessary evil, incredibly empowering, or utterly unattainable. Or anything in between those options. It really is a case-by-case and can be dependent on your meds, you lifestyle, the severity of your illness, the type of work, etc. I mean, there are just so many factors involved! It can be kind of overwhelming to talk about. But here we go!

Working while Living with Fibromyalgia

Deciding to Work

Okay, I know this sounds weird. Does anyone really choose to work? Don’t people work out of necessity? Well, yes and no. There are some people, including some with fibromyalgia, who honestly can’t work. Heck yes they would work if they could, but their symptoms are so severe that even minimally active or demanding jobs are too much.

Other people with fibromyalgia have the option to work from home. Honestly, if you ask me, this is pretty ideal. It allows you some flexibility to work around your symptoms while still making an income for yourself and/or your family. Plus, there is less energy exerted in interacting with coworkers and getting ready for work.

If you’re like me, you’re well enough to work an office job. Thanks to my medication, supplements, lifestyle changes, and alternative treatments, I (finally) have my symptoms under control enough to work in an office. This has been about a year in the making, so trust me when I say I’m incredibly grateful. But also trust me when I say that not every day is easy or symptom free. In fact, no days are symptom free. It’s just a matter of being manageable, and that’s where my symptoms are probably 95% of the time these days.

Working while Living with Fibromyalgia

I am always incredibly impressed and inspired by those with fibromyalgia that hold more physically demanding jobs. I know that movement tends to help fibromyalgia symptoms, but for me and my body, a physically demanding job just won’t work. But for others, it works great. Or it’s a necessity. Either way, it’s downright impressive.

But here’s the thing. As with most things, it’s all about listening to your body and understanding what works best for you. Of course, there are other factors involved in deciding to work. It’s about understanding your needs (financially and otherwise), your values, and your abilities.

Decisions to Make Once You Start Work

If you’re able to work, then you know that every single day is about making decisions. And that all starts with making the decision to get out of bed, which to be honest, is sometimes the hardest decision you can make all day. Not only are beds super comfortable and cozy, but when you’re in constant pain, your meds are still making you drowsy, or the fibro fatigue is just way too real, sometimes it may seem impossible to actually get up. So the first thing I do each morning is take account of how I’m actually feeling, instead of letting my meds or mood dictate my actions.

I try to set myself up for early morning success by getting to bed at a reasonable hour. I’m definitely one of those people that needs at least 8 hours of sleep, if not more. If I don’t get enough sleep, I tend to flare and be completely worthless, so I really try to focus on catching those z’s.

Working while Living with Fibromyalgia

Another big part of making sure I feel good enough to work is making decisions based on how I feel or how I know something will make me feel. For example, this evening, my parents invited me to go to dinner with them and a family friend. As nice as that may be, I also know I’m utterly exhausted after working a full day, and the food served at the restaurant would most likely make me feel horrible either tonight or tomorrow. So I made the decision to stay home.

When you start a new job, you also need to consider how you spend your days off. For me, it’s all about recooperation. I try to prioritize rest, not only for my body, but for my brain too. I need to recharge so I can be at my best when I’m working. I’m an introvert, so this often involved quiet time alone, or doing something that brings me some joy. You have to figure out what helps you be your best at work while also letting you live a life you actually enjoy.

One of the biggest decisions anyone with a chronic illness has to make when starting a new job is deciding if/when to tell someone at work about their illness. This is SO dependent on what you’re comfortable with and what the people at your work are like. I tend to be pretty open about my condition, as spreading awareness is incredibly important to me. But not everyone is comfortable sharing their illness with the people in their workplace. Unfortunately, there are some people in this world who do not believe in what they cannot see. They question our motives and our realities. There are some that just can’t understand, or refuse to try. And as wrong as that is, it’s still something we all have to be aware of in our workplaces. So this is a decision that is not only dependent on your openness, but also on the open-mindedness of others. Regardless of what others do, just make sure to do what’s right for you.

Working while Living with Fibromyalgia

Work can be exhausting. Working while living with fibromyalgia can seem impossible. But just like with everything else, it’s all about finding your balance, and figuring out what works best for you. There are a lot of decisions to be made and remade on your journey of working while living with fibromyalgia. But I promise you, you will figure it out. Don’t forget, if you need some help or support, reach out to your friends and loved ones. And you always have a support system here.

 

Pacing with Fibromyalgia

Pacing with Fibromyalgia

I had a few ideas in mind for this week’s blog post. I’ve been thinking about topics like “Travel and Fibro” or “Fibro and Relationships” And don’t get me wrong, I definitely still want to do write posts about those topics. They’re both important when it comes to living your best life with fibromyalgia. But this week, I’m going a little more off-the-cuff and writing about a topic that’s super relevant for me at the moment (and really all the time), and I’m sure for many, if not all, of you. This week I’m talking all about pacing!

So why is it particularly relevant for me right now? Well, I got a new full-time job! Luckily, it’s a desk job with a relatively flexible schedule, but it’s a huge adjustment for me. I went from unemployed, when I was just focusing on taking care of my health and finishing the last couple things to get my Master’s, to 40-50 hour weeks in an office. And that’s a HUGE shift in energy allotment. It’s required me to fully rethink my weekly routine, my activities, my relationships, all of it. It’s required me to start pacing every single day, every single week. And that’s totally fine with me because it’s helped me find balance and feel good most of the time.

Pacing with Fibromyalgia

What is Pacing?

What is pacing anyway? It’s a term I think we’re all familiar with, but maybe not in the context of living with fibromyalgia. I think Donna over at February Stars puts it really well by saying pacing is “doing a little at a time and breaking down tasks so they are simpler”. She’s also right in saying that, while that may seem simple and intuitive, it can be a lot harder than it seems.

I think this is because, before life with fibromyalgia, we’re so used to doing things a certain way, or doing a certain amount in a day, and when we reduce what we do in a day because of fibromyalgia, it may seem like a lot. It may seem like we’re not doing enough or not keeping up. But sometimes, we may still crash and end up in a flare.

I also think this is because we often compare ourselves to the “healthy” world. We hold our standards of productivity at the same level of people who aren’t living with fibromyalgia or other chronic diseases. And as much as we’d like to be normal and like to be treated like we’re healthy, the fact is, we sometimes have to adjust the way we do things to address our physical (and sometimes mental) limitations.

Pacing with Fibromyalgia

The First Steps

For me, and for many others out there, the first steps of figuring out your pace is giving yourself grace. Give yourself permission to do less, to let go. It’s okay to not be as productive as you once were. Your worth is NOT dependent on how much you get done or what you can do. You are worthy simply because you are you. Repeating this notion to yourself over and over again if your struggling with the idea of doing less, or feeling guilty for doing less, can be very helpful. And remember, if you work yourself into a flare, you’re going to be able to do a whole lot less while you recover.

While making sure you’re kind to yourself, allow yourself to listen to your body and mind. Mindfulness is a very powerful and important tool of pacing. It’s resting before getting too tired. It’s knowing when you can keep going. Mindfulness is key to making sure you don’t take it too far, or learning from it if you do. Listening to your body, and honouring what it tells you, is a key part of pacing.

A Few Tips

So that’s really the gist of pacing. It really does seem like a super simple concept, right? But the thing is, it’s SO individual, and every day is going to be different. Overall, however, there are a few ways you can definitely find some success with pacing.

Pacing with Fibromyalgia

  1. Get rid of the word “should”. It’s basically the worst, most guilt-laden word in the English language. It is literally motivation to do things based on the guilt you’d feel if you didn’t. But the thing is, most of those things you “should” be doing aren’t that important. So figure out what is essential and important to you, and prioritize those things. If you feel you’re able to do more once you’ve addressed those things without using all of your energy, prioritize what else serves you and use your energy accordingly. But don’t think you have to get every single thing on your “to-do list” done today, tomorrow, or even this week. Because I guarantee most of it can wait.
  2. Cut out the toxic people/activities. I know, I know. A lot easier said than done, right? Especially when those people are family members, coworkers, or people you have to deal with every day, or those activities are vital for living a functional life. I’m not saying just drop everyone and everything from your life. That would be ridiculous. What I am saying is be aware of how much energy you give to those people/activities. Don’t allow them to take up more than they deserve, because your energy is much too valuable for that. And if you do have to deal with these people/activities, try to prepare so that you can make sure they only take what you give them.
  3. Be patient. This is much easier said than done too, I know. But it’s something else that’s incredibly important. Be patient with the fact that things aren’t getting done as quickly as they used to or you’d like them to. Be patient with yourself when you do end up overdoing it and throw yourself into a flare. It will happen, especially as you start to figure out what works for you. When that does happen, give yourself the time to recover, then try again. Us fibro spoonies are nothing if not resilient, so keep trying and learn from your experiences. You will figure it out and it will get easier! And once you figure it out, you’ll be able to slowly build up to doing more and more without throwing yourself into a flare. So please, be patient. Pacing is worth it. I promise.

Do you have any experience with pacing? Let us know below!

Pacing with Fibromyalgia

7 Things That Can Trigger a Fibromyalgia Flare

7 Things That Can Trigger a Fibromyalgia Flare

We all know that fibromyalgia flares are rough. Heck, I wrote a whole post last week about How to Deal with a Fibromyalgia flare. Because let’s face it, they’re basically the worst.

So this week’s post isn’t going to be how to make flares shorter or easier. Instead, I want to talk about things that actually cause fibro flares. Because if we know what causes them, we can be better equipped to avoid them. There is a bit of a caveat with this post, as there have been with my last few.

I want to make sure we’re all on the same page before I dive into the bulk of this post. This is by no means an exhaustive list of things that trigger fibromyalgia flares. We are all bioindividuals. While some people with fibro have similar triggers, everyone has their unique triggers. If you feel so inclined, I would love if you share what triggers your fibro flares by commenting below. If something in particular on this list is a major trigger for you, or if you just want to share your experiences, please leave a comment! Let’s have a conversation and help each other!

7 Things that Can Trigger a Fibromyalgia Flare

7 Things That Can Trigger a Fibromyalgia Flare

Stress

Honestly, stress is one of my main symptom triggers. Now stress comes in a couple different forms: physical and mental. And obviously there are a variety of ways these can manifest, so I’m going to focus on mental stress here. Busy day? Overwhelmed? People get stressed for a lot of reasons and way too frequently. It’s basically ingrained in our culture. Unfortunately, it seems stress has some pretty intense physical consequences as well.

High stress levels are a pretty common trigger for many fibromyalgia patients. Not only does it cause fatigue and fibro fog, but many patients (including myself) experience increased pain levels after a particularly stressful day or week. Sometimes, it can even leave patients bedridden for a bit. And while stress can’t be avoided, it can be minimized. Try to avoid unnecessary stressful situations and be sure to provide time for rest when you can.

7 Things that Can Trigger a Fibromyalgia Flare

Weather Changes

This was a something I honestly didn’t believe until I experienced it myself. How can changes in the weather affect how someone feels physically? Well there are a lot of ways the weather can cause a flare. First and foremost is temperature changes. Some fibromyalgia patients have difficulty regulating body temperature, so rapidly changing environmental temperatures can wreak havoc. Same goes with temperatures that are too hot or too cold. Even changes in pressure and humidity can affect how your body functions and trigger a flare.

7 Things that Can Trigger a Fibromyalgia Flare

Sensory Overload

Have you ever been at a party or another event and all of a sudden you feel a flare coming on for what seems like no reason? You’re not sure why but all of a sudden you’re hyper-aware of every single sound, smell, light, taste, and feeling. THAT is sensory overload. And because fibromyalgia is technically a central nervous system disease, it can cause your symptoms to flare. Many fibromyalgia patients have experienced increased headaches or migraines, dizzy spells, and other painful symptoms as a result of sensory overload.

7 Things that Can Trigger a Fibromyalgia Flare

Sickness or Injury

I know I can’t be the only one who feels my fibromyalgia symptoms flare any time I get a cold (actually recovering from one right now). As if being sick weren’t hard enough, add in a fibro flare. Who doesn’t need extra achy joints and fatigue when you’re in the midst of a coughing attack, am I right? But in all seriousness, many people with fibromyalgia get pretty severe flare ups when they’re sick with the flu, a cold, or any number of other ailments. The same holds true for injuries such as broken bones or wounds. The belief behind this is that your body has to use precious resources to heal and recover, resources that are usually allocated to functioning semi-normally with fibromyalgia.

7 Things that Can Trigger a Fibromyalgia Flare

Not Enough (or Too Much) Rest

Sleep deprivation is a pretty common symptom of fibromyalgia. But unfortunately, this same sleep deprivation can cause fibromyalgia flares as well. Without adequate time to rest, your body can’t recover from the day, wearing you down and eventually triggering painful and frustrating symptoms. Some people with fibromyalgia actually require more-than-average time for a full night’s sleep to help their body fully recover. That way they can tackle the day ahead comfortably.

Alternatively, too much sleep can also cause problems for fibromyalgia patients. Too much inactivity can make your muscles more sore and your joints stiffer. Oversleeping past your routine sleep time can also throw your body out of whack, causing a flare. So it really is all a balancing act, and learning what your body needs. 7 Things that Can Trigger a Fibromyalgia Flare

Certain Foods

Again, everyone’s body is different. And everyone has different nutritional needs. But certain inflammatory foods, such as refined sugar, gluten, processed foods, caffeine, and alcohol, can often lead to fibromyalgia flares. This one can take some trial and error to figure out, finding what works for your body and what doesn’t. For me, for example, gluten and alcohol are big triggers, both for fibromyalgia and interstitial cystitis. Soy is another. However, I also know people with fibro who do fine with all those foods but can’t handle nightshades. So it’s all about finding what works for you and your body.

7 Things that Can Trigger a Fibromyalgia Flare

Overextending Yourself

I guess this could go under stress, but I think this is an important thing to cover. As people with an invisible illness, we are often held to the same standard as people who are not living with invisible illnesses. As a result, we often think that we should be able to do every single thing we “should” do as apparent members of the healthy world. And don’t get me wrong. I know that sometimes we all end up overdoing it. Sometimes it can’t be helped. However, it’s important for all of us to remember that sometimes we have limits that others do not have. And it’s okay to acknowledge that. It’s okay to say no to things that do not serve you, or will cause a flare. Just remember, by taking care of yourself now, you’ll be better off down the road, which is better for everyone.

7 Things that Can Trigger a Fibromyalgia Flare

9 Tips for Dealing with a Fibromyalgia Flare

9 Tips for Dealing with a Fibromyalgia Flare

Unfortunately, even when you’re managing your fibromyalgia well through lifestyle changes, alternative and conventional treatments, and supplements like FibroAid, you’re still bound to have a flare day every now and then. They’re inevitable. In fact, I’m in the middle of a flare right now. And I’m not going to sugar coat it. It sucks. But you all know that!

I haven’t flared for a few weeks now, which is great, and I owe a good part of that to FibroAid. But this morning I woke up feeling like I hadn’t slept a wink. My entire body was aching, I was fatigued, light-headed, and extremely weak. Some days, if I get up and get moving, I do okay and can function. Today was not one of those days. Instead, getting up and trying to function actually made me feel worse.

So what do you do on flare days like this? You know they are bound to happen. And while there’s not much you can do to keep them at bay forever, there are things you can do to make these hard days a little easier.

9 Tips for Dealing with a Fibromyalgia Flare

How to Make Your Flare Days a Little Easier

1. Give yourself a break

This is probably the hardest thing for me. Our society conditions us to believe that our worth is based on our productivity, and that taking care of ourselves when we need a little extra is a sign of weakness. Well I’m here to tell you that absolutely none of that is true. You are worthy simply because you are you! Taking time to care for yourself, especially in the middle of a fibro flare, is essential. It’s important for your health, for your sanity, and for your happiness. Don’t get too hard on yourself about all the things you cannot do. Focus on what you CAN do. And that is take care of yourself and try to make your flare a little shorter than it otherwise would be.

2. Rest if you can. Take it easy if you can’t.

Whether you’re working or in school, chances are you can’t take a sick day every single time you’re in a flare. If you’re a parent, you don’t get any sick days at all. If you can, rest and recharge. Be sure to take your meds, use any at-home treatments you may have available to you. Listen to your body. You know it better than anyone else. If you can’t rest and recover, take it easy. Don’t over-commit yourself, and know that it’s 100% okay to say no to things that you are not up for or that do not serve you. Most things can be done tomorrow, or the next day, or even the day after that. Be kind to yourself and your body, and take it easy.

9 Tips for Dealing with a Fibromyalgia Flare

3. Don’t be afraid to ask for help.

Asking for help is not a sign of weakness. You don’t have to deal with a flare day alone. It’s okay to ask for help if you need it! If you don’t have the energy to do something, see if someone can help you. If your brain fog is so bad you can’t drive (we’ve all been there), it’s okay to ask for a ride. You will always be better off asking for help, especially in the long run, than you will be trying to do it all yourself.

4. Talk to someone.

As I said above, you are not alone. And you don’t have to face a flare day alone. That’s what your support system is for! If yours isn’t very strong, there are quite a few online communities where you can find people to talk to. If you have access, speak to a counselor or therapist. Whatever you do, talk to someone. Most people are kind and will want to help you in any way they can. You are not a burden for seeking a help or a sounding board to vent to. Heck, you can even contact me if you want. Just head to my personal blog, click on the “contact” tab, and shoot me an email. I’d be more than happy to help! Support is key for getting through any flare a little bit easier.

9 Tips for Dealing with a Fibromyalgia Flare

5. Distract yourself with something that brings you joy.

This one can be hard in the middle of a flare. It’s down right challenging to find joy during fibro flares sometimes, and if you’re someone who is happiest when you’re busy or active, this may be exceptionally hard for you. Hard, but not impossible. Is there a certain TV show that makes you laugh? Watch it (mine is The Simpsons). A book you’re enjoying? Read it. Knitting, drawing, writing, painting, and really any other low-energy activity is perfect for a flare day. My go-to on really bad flare days is listening to podcasts. You don’t even have to open your eyes, but they are a great escape.

6. Get enough sleep.

Fibromyalgia affects sleep patterns. Sleep disturbances is actually one of the main symptoms of fibromyalgia. So getting enough sleep is much easier said than done in the middle of a flare. If you can nap, try to nap. I know sometimes naps can help me reset and minimize my symptoms if I feel a flare coming on. Not a napper? Make sure to give yourself enough time at night for a full night’s sleep, whatever that means for you. For some, it’s 7-8 hours and for others it’s 9-10+. So just do what works best for you. You may need some extra time on either end of your full night’s sleep to either fall asleep or fully wake up during a flare, so make sure to plan for that!

9 Tips for Dealing with a Fibromyalgia Flare

7. Hydrate.

This one should be obvious for just overall health. We all feel better when we’re fully hydrated, and for some reason, this seems to be the first thing to go out the window when we start feeling horrible. But staying hydrated will improve your energy, support overall bodily functions, and may even help clear up the fibro fog a bit! And we know we can all use a little help in all three of those areas!

8. Avoid trigger foods.

Don’t get me wrong. I’m a total comfort eater. When I feel horrible, I either don’t eat because of nausea, or I eat food that makes me feel better emotionally. And while sometimes, that’s okay, it’s not always great for fibromyalgia flares. If you know your trigger foods, try to avoid them or find alternatives. They may cheer you up a bit emotionally, but if they make your symptoms any worse, that would be counterproductive. Don’t know your trigger foods? Talk to your doctor, do a little research, and listen to your body! Here‘s a list to give you some ideas of what could potentially be trigger foods for you, but your body knows best!

9 Tips for Dealing with a Fibromyalgia Flare

9. Prepare if you can.

Obviously, you don’t expect some of your flares. Sometimes, there’s no apparent cause and your body just decides to revolt. But other times, you might be able to prepare. If you have a big event coming up, are traveling, or know there is going to be a lot of stress in your life, you can schedule recovery days for yourself. You can try to make sure you have everything you need on hand to make sure your flare is a little less painful (metaphorically and physically). You can even prepare a little bit for your unexpected flares by making sure you always have certain pain and symptom management tools on hand at all times. It won’t make the flare go away, but it might just make it a little easier.

9 Tips for Dealing with a Fibromyalgia Flare