The Frizzy Fibro
Fighting fibromyalgia & humidity daily.

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Giving My Boot the Boot

Boats and Boots
(peep the top of my ortho boot)

I had worked so hard…

This August, on a trip to celebrate my 1 year anniversary of tackling my fibromyalgia, I tripped. More specifically, I fell HARD onto the cobblestone streets of Newport, Rhode Island. I was in sensible shoes, in perfect health (all things considered), and was not rushing or being careless. It was as if my ankle just up and quit on me and took the rest of my corporal body with it.

This is a real setback, coming just in the moment when things were starting to go so well.

Luciano Figueroa

I didn’t deserve this. I had spent an entire 12 months doing everything I could to feel better. I quit my job, changed my diet, paid for every therapy, taken every vitamin that had a chance to help me, challenged myself through every workout – so how could I have been dealt this setback? The immediate flush of anger was almost more extreme than the pain in my ankle/foot.

I was, in a word, miserable. I had worked so hard for an entire year to regain my freedom and independence. My fibro had kept me from friends, family, and fun for the bulk of 2017 & 2018 and I was elated to be able to do so much for the beginning of 2019. Suddenly finding myself with my foot in what felt like a bear trap was debilitating. I was filled to the brim with negative emotions and I could not believe that a simple stumble could have undone a year of hard work in an instant.

This was bad, really bad

Subsequent X-rays and MRI’s would show that my ATFL (Anterior talo-fibular ligament) was completely torn. This ligament runs along the outside of your ankle and basically keeps you from rolling your ankle when you move or stand on your toes. I had to make the decision between surgery or living with it torn (as ligaments to not repair themselves) and going through extensive physical therapy. Due to the complications that my fibro could cause post-operatively, I made the decision to try and rebuild the area with PT and avoid surgery for the time being.

The recovery process began with 8 weeks in an orthopedic boot and 2 weeks of almost no weight bearing. The first 2 weeks I was essentially confined to my 1-bedroom apartment and when I went to work I had a knee scooter to get around. In the weeks that followed, I was allowed to get out for small periods of time, but standing for more than 5 minutes was almost impossible and since it was my driving foot, I was reliant on others for rides that were more than 10 minutes away.

An uphill battle began

My first PT session was a mental nightmare. I had not realized how bad the extent of my injury was because my foot had been inside of the boot. Being asked to roll a ball back and forth or trace the alphabet with my toes was genuinely impossible. I broke into frustrated tears and felt sharp fibro pains shoot up my leg as I attempted the motions. My physical therapist was patient and fed me multiple platitudes like “setbacks only make for bigger comebacks!” For the first few sessions, I was certain it would never get better.

What this time in my life showed me more than anything else was how dependent I was on being well. So much of my identity was hinged on my ability to completely overcome a challenge. I had been proud of my ability to “beat” my fibro into submission and reclaim a “normal” life, so finding myself in more pain than before and unable to do the things I want was disheartening. The pain in my ankle flared all of my symptoms back up and I felt like I had to start from scratch. More than anything, I realized that I had to work on my mindset.

Fibromyalgia was not going to be beat, bested, or put behind me. It was going to be a part of my life for the rest of my life and allowing myself to be this defeated all but guaranteed that I would remain in pain. Stress agitates my symptoms and allowing my mind to stress itself out was detrimental – there were already external stresses that I had no control over, I did not need me on top of it.

A light up ahead

About 5 PT sessions in, I started to notice dramatic changes. I was getting stronger. I was able to transition into a brace and then a compression sleeve. The more that I focused on myself and my well-being, the faster I progressed. I was grateful for the friends and family who recognized the toll being at home was having on me and reached out to offer rides or come over and spend time with me.

I am technically still supposed to be in a support brace most days, but I said goodbye to my brace (with the blessing of my PT) back in November. I have blown the expectations my recovery team had for my rehabilitation out of the water and I am not prepared to stop now. Does my ankle still hurt on rainy days? Is it swollen a few days out of the week? Am I likely never going to be able to fully trust it the way I could before? “Yes” to all of these questions. But also “Yes” to living life on my terms and at my own pace.

I would love to hear about obstacles you have overcome – whether they were chronic illness related or not. Let me know down below!

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Looking Sick

“But you don’t look sick”

– A seriously misguided or woefully misinformed person

Oh lord, is there anything more dreaded than an uneducated comment like this one? In the year since my diagnosis, I have heard quite a few questions like this one from family, friends, coworkers, strangers, and even doctors (not all doctors are created equally, they are human too!). The “looking sick” question is probably the one I get the most.

“When you have an invisible disease, your sickness isn’t your biggest problem. What you end up battling more than anything else, every single day, is other people.”

Heidi Cullinan, Carry the Ocean

I think there’s more than one reason someone says this to a chronically ill person. I also know for a fact that people don’t necessarily say these things to be hurtful, but anyone who has taken intro to philosophy knows that intent and impact don’t always line up. We can’t control how other people act, but we can control how we respond. In this post, I am going to cover some of the reasons people say things like this and how I have responded to them.

It took me a while to be able to take a breath and recognize where someone is coming from when they say these things. It is easy to feel defensive because a) you’re in pain and b) you are being attacked and your feelings are valid, but I try to do my best to stay calm. I figure if I can educate the person just a little bit or even just instill some trepidation around making comments like that, then I might save a fellow invisible illness sufferer discomfort down the line.

They are trying to cheer you up

Usually comes from: a friend or family member who you don’t see every day.

Intention: I get this a lot from friends when I actually do try to open up about what I am going through. They’ll say things like “but you still look incredible” or “you would have no idea” and my stomach just sinks. I think they are trying to make you feel better by letting you know strangers can’t tell you’re sick, but they don’t realize that having to explain your invisible illness to people is more than half of your battle.

Response: In an instant, I regret saying anything at all because now in addition to everything I am already dealing with, I am now annoyed at my friend. Typically with this one, I try to say something like “I wish they could, maybe then people would be more understanding.” Comments like these from friends/family can be some of the most challenging because they are not coming from an ill-intentioned place.

“Telling me there is no problem 
won’t solve the problem.”

Emm Roy, The First Step

They are questioning the validity of your symptoms

Usually comes from: coworkers, acquaintances, or strangers

Intention: I like to think that there’s good in everyone, and that when they ask this it is 100% because they want to learn to better understand what you’re going through. Unfortunately, it often is said in this way when they are calling into question your ability to do something or you “actually being sick”

Response: When I get it from acquaintances or strangers, I usually try to keep it short and sweet so as not to get into an argument. I’ll typically say something like “Well I hope you never get what I have, I wouldn’t wish this pain on my worst enemy” and walk away. Depending on HOW rude the person is, I may instead say “That’s crazy because you do look stupid!”, but I would not recommend others risk their health and safety by insulting strangers. When I get it from coworkers, I think its necessary to establish a boundary, as you have a right to feel comfortable in your workplace. I have said things like “There’s also no way to tell someone has a bachelor’s degree just from looking at them, but you trust that HR verified that Mary*. If you have any further comments or questions about my health, I would be happy to schedule a meeting for you and I with HR so you can satisfy your curiosity” *Sample name, no Marys were used in the production of this blog post*

“Pain does not need to be seen to be felt.”

Emm Roy, The First Step

They are feeling inconvenienced by your illness

Usually comes from: those closest to you

Intention: This is the worst one. This is your well-intentioned, but ignorant mother/father/partner/family member, who is having a “but you were able to do XYZ last week” moment. They love you, they are likely doing the best they can to understand your condition, but they are human. Humans are inherently selfish, our self-preservation instincts are what got us here today. This “but you don’t look sick” is often brought to you in part by doing your hair/make up or putting on “real” clothes, so they assume you must be feeling great. When you are not able to do something they want, that selfish instinct kicks in and they start trying to quantify your illness by making comparisons to other previous instances.

Response: These responses will be different depending on the person and how much you truly feel like they normally understand and respect your illness. I would probably go with “I know you are well-aware of how serious my condition is and I know you would not want me to jeapordize my health for something trivial like *insert activity they wanted to do here*. In case it wasn’t clear, I still have fibromyalgia today, like every other day, and will for the rest of my life.” I would also definitely circle back on this conversation later if they don’t apologize, as its important that those in your innermost circle are not only supporters, but also advocates for your condition.

There are a million other instances comments like this happen and obviously this list does not account for each person’s individual comfort level speaking up. Instead, hopefully this can give you some food for thought or ideas of your own, so that you’re not left tongue-tied in the moment.

“Yes, I have tried. Yes, I am still trying, 
and yes, I am still sick.”

Emm Roy, The First Step
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On this day a year ago…

Me relaxing at the beach in Newport, RI

Life operates in a very cyclical way. I often find that certain times of year can be so good to me, while others are tied so closely with pain that the very recollection of them rubs salt in a wound I thought already scarred over. The summer has been unbelievably good to me – so good to me that I almost got away without reflecting on where I was this time last year: unemployed, unhappy and unable to picture a future that did not contain the daily physical pain I was experiencing. As I looked at my work calendar, something about the date dragged me back to this time last year, like a real-time Facebook memory I couldn’t close out of.

I attribute the haze that hovers over the 9 months proceeding my diagnosis to the heavy brain fog that plagued my every waking moment.

A year ago this month, I made the decision to leave my job. A month before, I had been diagnosed with Fibromyalgia. The months of pain and stress that drove me into the doctor’s office that day are a blur now. Sometimes I think it’s my mind trying to protect me from the negative emotions I associate with that time in my life. Most of the time, I attribute the haze that hovers over the 9 months proceeding my diagnosis to the heavy brain fog that plagued my every waking moment.

The decision to leave was not an easy one. I had always held an image of myself in my head – someone who could overcome anything and accomplish anything I set my mind to. When I tell people about my diagnosis and the decisions that followed, they are often shocked. I hear things like “you would never know” or “it’s so hard for me to imagine you like that.” As soon as I had a diagnosis, I pored over every book, article and blog post I could. I made a thousand pro and con lists, I tried to think of alternative schedules or work-from-home scenarios to pitch to my job. The common denominator in all of this was my brain – the mental image of myself, thinking of alternatives, trying to rationalize a way that Fibromyalgia wouldn’t win. My whole life I have been lauded for my brain and my determination and I was not prepared to lose myself to this.

For the first time in my life, my body was screaming louder than the anxieties in my head.

However, one day in late July, midway through a book on the mind/body connection of Fibromyalgia, something clicked. There was no researching this away, no way to test out of this course of my life – it was no longer me versus Fibromyalgia, it was Fibromyalgia and I for the foreseeable future. A weird sense of calm washed over me. Despite having been riddled with anxiety over this decision for months, the choice was suddenly undeniably easy. For the first time in my life, my body was screaming louder than the anxieties in my head. My brain decided to stop trying to drown it out and listen. I understood that there was going to be no healing working almost 70 hours a week in a high pressure environment.

“When your phone is on 5%, you frantically seek out a power source, avoiding any further use until you can be sure you can avoid pushing it beyond its limits. But when your body is on 5%, you see how much further you can push it, until you break it.”

I wish I could go back in time and make that decision earlier. The very day I made the decision to put my body first, I started to feel better. Removing myself from the stress was just one small step towards the level of wellness I have achieved now, but it was crucial. I read a saying that made how little attention we give ourselves clear – “When your phone is on 5%, you frantically seek out a power source, avoiding any further use until you can be sure you can avoid pushing it beyond its limits. But when your body is on 5%, you see how much further you can push it, until you break it.” We treat the technology we keep in our pockets better than our bodies themselves.

Almost everything about my life is different now. I love the work that I do and was blessed to find a job that had the kind of work/life balance that my Fibro needs. My goals and dreams haven’t gone away, they’ve just changed course. I am still learning about new challenges and limitations all of the time, but I am no longer putting my body in direct competition with my mind. I am smarter because of my Fibromyalgia – more cautious, more planful, but still incredibly determined.

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