sunrise over horizon

Why Mornings Are Hard as Someone With Fibromyalgia

404
404
1

The alarm clock hasn’t gone off yet, but I’m now awake, yet refusing to get up. I’m immediately thinking about the amount of effort required of the next few hours. I know exactly what to expect since it’s my routine five days each week, and I dread what’s coming.

It’s 5:30 a.m., and I’m not sad the night’s over since my fibromyalgia pain spots already created too much pain to remain asleep. But as I get out of bed and limp to the bathroom, I assess myself to see which body parts hurt more or less today — every day hurts, but no two hurt in quite the same way.

My showers are more time-consuming now. I move slower, stretch under the spray of the hot water, and stall for time, leaning against the side of the shower, not wanting to shut off the water. I’m just procrastinating, knowing I’m running late. Reluctantly, I eventually shut off the water and then try to make up time by quickly dressing, swallowing my morning meds, and heading out. These 40-ish minutes are simple yet challenging, so I drop into the seat of my truck with relief and head off to work.

My daily commute is well over an hour each way. I constantly fidget, seeking the elusive position that will bring comfort to my hips; or reduce the pain in my right heel; or keep my clothes from bunching up, which is oddly bothersome against my torso. I rely on my side mirrors to reduce the need to look over my shoulders which exacerbates my neck pain. Whenever I’m stopped I bounce my legs to force a tiny bit of movement into them and reduce the length of time they’re stagnant. About half of this drive is in silence, leaving the radio off to generate some amount of de-stressed calmness.

Once I arrive at work, I park, kill the engine and segue into my next stall. Depending on the morning’s traffic, I’ll spend the next five to 15 minutes sitting, under the pretense of sweeping through overnight emails, Facebook posts, tweets, and the weather forecast. But I’m drained by the mere thought of the next part of my morning.

Reluctantly, I finally open the door and slide out of the truck, shuffle around to the passenger’s side, gather my work bag and lunch, and then hobble to the stairwell. While my heels are better than they’ve been in over a year, climbing stairs has now become particularly rough on my right leg and hip. I try to time it to be far enough from anyone else so that I won’t feel pressured to change my pace.

I’m then faced with walking the entire length of the building to get to my office. I either keep my eyes focused a few feet in front of me or look all around, avoiding the line of sight to the opposite end of the hall that tells me how far I still have to walk. Finally, I make the turn, pivot again into my office, and drop into my chair. I’m panting, and it takes a minute for the pain to subside.

After a moment to recover, I power up my laptop and begin my next stall. I’ve made significant changes to my daily nutrition but still allow myself a relaxing cup of coffee with cream. I now need to retrace my steps to the nearby kitchen, and hate the thought.

When the moment feels right, I drag myself out of my chair and fight through protesting hips, balky knee, barking heels, and whatever else is misfiring this morning, and I work my way back to the kitchen, hoping it’s empty; I’m not ready to be pulled into conversation with someone, forced to pretend I’m fine. Often, it’s barren and I move through my tasks with K-cups, napkins, creamers, and then retreat back to my office.

I finally drop into my chair again, knowing I’ve now reached halftime in my morning challenges. I’m over two hours into the morning, and I’m mentally exhausted. I’m allotted an hour or two before my meetings begin, and I can pace myself on prepping for those meetings and occasionally getting up to check in with someone or to go to the bathroom, which is also a way to try to continue working out some physical kinks. It’s a chance to shift from the effort to get started and instead to focus on being productive.

As my meetings start, I then mentally convert the morning’s activities into bite-sized pieces to get me to lunch. That will be a much-appreciated hour to sit in my office, eat my rigidly prepared meal that keeps my digestion in good shape, and to gear up for the afternoon. I’ll be in more of a groove at that point and the respite does a good job of making the afternoon manageable.

I used to bounce out of bed and move quickly and mindlessly in the morning, as if a well-oiled machine. It’s now mentally and physically exhausting. It’s the source of the bittersweet feeling I have when going to sleep for the night: satisfied in those final moments at making it through the day, with no obligations for the next few hours; yet depressed at knowing what lies waiting for me on the other end of the night.

My silver linings are that my mornings begin in solitude, giving me cover for my struggles, and I’m afforded enough time to compose myself before I’m forced to fully engage with coworkers. I’ve also pushed through this daily grind often enough to evolve it into a routine — at least I know the progression to get me into the flow of my day.

For now, I’m just taking each morning one step at a time.

We want to hear your story. Become a Mighty contributor here.

404
404
1

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

People With Fibromyalgia Describe What ‘Fibro Fog’ Feels Like

TOPICS
, Video
JOIN THE CONVERSATION

What You Need to Remember Before Sharing This Disability Shopping Cart Meme

402
402
19

I think we’ve all seen this meme. It shows a disability shopping cart and says, “This is for the elderly and the disabled, not your fat ass.”

meme of motorized shopping cart with text this is for the elderly and the disabled not your fat ass

If you only knew why I am overweight. My weight is just another symptom of my condition. If you were in so much pain you could barely get out of bed, maybe you would understand my need to use a cart when I go shopping. If every move of yours was a chore, maybe you would understand. If your legs felt as if they weighed 100 extra pounds each, maybe you would understand.

I used to be skinny and fit, but my fibromyalgia and chronic fatigue syndrome has changed me in many ways. The pain, the fatigue and the all over uneasiness that I feel has made me gain weight. I would love to be the person I use to be. I would give almost anything to be that person again, but there is nothing I can do. Exercise is hard for me. I do what I can, but it’s simply not enough. My activity is limited by pain and fatigue.

It’s so hard to do anything at all, much less walk around a store some days. Trust me, I would love to be able to walk among the rest of you, but some days are so hard. I try not to leave the house on those days as I don’t like the judgmental looks I get when I have to use a cart, but some days I simply must. Those looks hurt. They make my guilt that much worse. I feel bad enough; I don’t need your judgment making it worse.

If you could only live a single day in my body, maybe you would learn not to judge others simply by what you see, for you have no idea what they struggle with. However, as bad as you may hurt me with your judgment and looks, I would never wish my pain on you or anyone.

We want to hear your story. Become a Mighty contributor here.

402
402
19
TOPICS
JOIN THE CONVERSATION

7 Things I Want to Explain to My Friends and Family About Chronic Pain

2k
2k
0

First and foremost, please let me tell you I love you. I appreciate you more than I can possibly explain. You are the reason I can still feel “normal” at times. But there are things you don’t understand. I know you try your best, but please let me explain:

My pain is different from yours.

I know you understand what it’s like to have a pain that makes you double over or that niggles away at you for a few days. But imagine those pains in different places in your body constantly combined with fire ants crawling over your skin and twinges that randomly decide to attack when you least expect it. Sound physically attacks me, and lights physically hurt my brain. I would give anything to take away your pain because I know what pain is and that we feel it differently. So please do not try and compare our pain levels.

I may have only been awake for six hours, but yes I’m exhausted.

I used to tease my girlfriend for taking naps, but now I get it. I really do get it. I’d rather nap and manage a few more hours later in the day than not get to watch my favorite show live or join in that Facebook livestream as it happens.

I thought I could do it when I said I would, but I can’t now.

When you asked me an hour ago if I could fold the laundry, I thought I’d have the spoons in an hour to help you do it. Since then, my thighs have decided to flare, my senses have been attacked by that car alarm and my sinuses have caused an attack of vertigo. Pretty much all I can manage right now is another episode of this show.

I love hugs but some days I can’t stand to be touched.

I greet you with a hug often. But there are days where even rubbing my own eyes hurts my hands and my clothes hurt my skin, never mind how soft they are. That is the nature of having fibromyalgia, Asperger’s syndrome and sensory processing disorder. And yes, that hurts me more than it hurts you because the days I can’t be touched are often the days I crave it the most. If I trust you enough to hug me you are special to me, so please don’t think that me saying no once has changed that. I’m having a bad pain day. That is all.

Fibro fog means I’m forgetful and have the worst case of butterfingers.

I was scatty before, now I’m just forgetful. I forget appointments, I forget times. Everything has to have an alarm. Everything needs a reminder. I forget words. I forget names. I need lists to go shopping. Coffee became “not tea” for an entire evening because I couldn’t remember the word.

I’m having to use a plastic plate for meals because I can’t handle the weight of a heavier dinner plate.  I drop things a lot. I laugh about it but it embarrasses me. And I want to cry when it happens.

Sleep is something that comes in odd chunks of time.

When I’m awake I want nothing more than sleep most of the time. When I go to bed, even with the help of pain relief and other medication, getting comfortable enough to sleep is difficult. And so long after my sister has fallen asleep, I’m lying awake listening to audiobooks on my phone and my mind is running a hundred miles a minute. If I’m fortunate enough that my hands allow me, I’m playing games on my phone too or writing journal diaries in notes. When I do fall asleep, it’s hard to either stay that way or wake up again. This cycle repeats daily.

I am still learning, so I will get frustrated.

There are many many many times I do not tell you exactly how I’m feeling. You are my friends and my family, you know (often to your own frustration) that this is the case. But some of you have seen me getting frustrated as I learn what this new diagnosis means for me and how this new set of symptoms is changing my life. I will be grouchy at times. I will be short tempered. That is natural. So please know if I snap at you that I don’t mean to do so. I’m trying not to.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images

2k
2k
0
TOPICS
JOIN THE CONVERSATION

To the Person Who Told Me Fibromyalgia Doesn’t Exist

3k
3k
28

I may not be able to explain what fibromyalgia is. I’ve heard it’s a muscular thing, a nervous system thing and a genetic thing. But for me, it’s a real thing.

I’ve been dealing with it for the past four years when the symptoms started a few months after my first depressive episode. All of the sudden, at 18, I was exhausted. I had no energy, I found myself sleeping more often and keeping up with life and daily activities were way too much for me.

If I went out one night, I had to spend the rest of the weekend recovering from the exhaustion that it caused. I could sleep for 12 hours and still feel like I’ve been sleep deprived for three months.

And the fatigue — oh, the fatigue. Have you ever felt tired after taking a shower? I have. You can’t imagine how much energy you need to stand up on the shower while using your arms to apply shampoo and wash it all off. It’s an immense effort.

When the shower is finally over, you have to decide what to clothes to wear and put them on. But you’re exhausted, like you just ran 50 marathons. So you just sit on your bed, looking at your closet and wishing tiny fairies would pick up your clothes and dress you while you just rest there.

Clear? OK, let’s continue because we’re far from being over.

Imagine having your skin covered in dark, purple bruises. They’re the kind you get when trip over a desk, and they hurt just by touching them. Yep, those. Now imagine one little kid per bruise, touching it, poking it and pressing it with a tiny but strong little finger — all day long and all over your body.

In addition, imagine your body covered in needles that randomly pressed into your skin. It makes you feel like you have a thorn somewhere in your muscles. As every part of your body is in pain, but you can’t locate the pain, and you aren’t comfortable in any position. Your legs can’t stand being up for a long time, but when you sit down, your back hurts. And when you lie down, your arms hurt.

I forgot the stiffness. Your muscles feel like they were replaced by concrete overnight, and you can barely move. And it hurts. So you have to use your magic gadgets — a cane in my case or a wheelchair for others.

Amazing, I know.

Let’s continue to the cognitive part. In addition to all of that, you start forgetting things. You forget where you are, what you were going to do or what you just said. You have trouble concentrating and your memory sucks.

How could I forget to mention fibromyalgia’s BFFs: depression and anxiety? And this story cannot end without mentioning dry mouth, the swelling of legs and feet, migraines, oversensitivity to light and sound, body temperature issues, horrible menstrual pains, restless legs syndrome and digestive problems. And that’s it for now (that’s all I can remember, anyway).

Sometimes — most of the time, to be honest — you get all of the symptoms together. And there’s no cure for it. None. You can use palliative care in order to live your life in the most “normal” and “functional” way.

So to the person who told me fibromyalgia doesn’t exist, the next time you judge a condition you know nothing about, try talking to the people who live with it daily. More research may be needed for fibromyalgia, but it does exist. I live with it the best way I can, and while I’ll have awesome days when I forget most of the symptoms, there are days in which getting out of bed is physically impossible.

I’m lucky enough to be able to live my life in the most functional way I can by walking with a cane every now and then and canceling plans when needed. But I know people whose lives have been completely impacted by fibromyalgia.

So please, before you say fibromyalgia doesn’t exist, think about having all of these symptoms for just one day.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images

3k
3k
28
TOPICS
JOIN THE CONVERSATION

How Watching ‘Doctor Strange’ Helped Me Accept My Fibromyalgia

47
47
1

Like most weekend afternoons, my husband and I decided to go out to eat and watch a movie. I wasn’t too picky, so he ended up choosing “Doctor Strange.”

For those of you who haven’t seen it — spoilers ahead. All I knew going into the theater was that he was the newest in a long line of Marvel movies. My initial impression of Dr. Stephen Strange was that he was intelligent, gifted and extremely arrogant. He’s a brilliant neurosurgeon who saves the lives of those who may be deemed hopeless to others, but he does it for his own glory.

But he gets into a horrible care accident while driving carelessly one night. This is where I could tell his origin story was coming into play. As his car careens off of a cliff, you can see his hands go into the dashboard. When he comes to, he’s lying in a hospital bed with his hands heavily bandaged and is told he will be OK but unable to operate again.

Stephen is frantic and begins searching for a way to regain what was lost. Who is he if he cannot be a doctor? During the scene of the accident, I begin to tear up, but not because it was an emotional scene. Yes, it was horrible, but it wasn’t meant to cause tears. I started to tear up because I could identify with the sense of loss that comes with not knowing who you are after you lose something. He went to doctor after doctor, desperate for a cure, for a way to overcome.

Eleven years ago this month, I started experiencing the symptoms I’ve come to identify as fibromyalgia. I spent years going to specialist after specialist, reading countless books, trying diets, supplements, teas — anything to make myself well. Nothing worked, long term anyway. Some treatments actually made things worse.

After some time, Stephen goes to someone who can reportedly cure physical ailments. Stephen spends the last of what he has to go see her and to learn to use his mind to heal his body. And magic, but let’s leave that out for a minute. As he struggled to learn to use his mind to overcome his physical limitations, I saw how fighting against what has already happened won’t change anything for the better and that there’s no going back.

Near the end of the movie, Stephen has to make a choice to either go back to being a doctor or to take what he’s learned and improve the lives of those around him. He chooses the latter. 

I decided I will try to do the same. 

We want to hear your story. Become a Mighty contributor here.

Photo courtesy of Doctor Strange on Facebook

47
47
1
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.