|We look just like you. We act just like you. We laugh, we cry, we get frustrated. We're not that different than you.|
It’s difficult to explain or put into context how someone with an invisible illness or chronic pain feels on a daily basis to someone that’s never experienced it. It’s equally difficult trying to explain the side effects of chronic pain that bleed into your emotional and psychological wellbeing, or how it has the ability to change or alter your attitude and sometimes even your personality. It’s difficult because sometimes words just can’t help. It’s not something that can be discussed or put into words, because the words themselves aren’t powerful enough.
I guess the first thing I should do is to make sure you understand this one simple point – we don’t want your pity. Pity doesn’t make us stronger and it doesn’t make us feel better. In most cases, it makes us feel worse. Pity is the energy sucker and the depression bringer – the harbinger of the bad days to come and the hopelessness of ever feeling a completely pain free or symptom free day again. Pity does just as much damage as the physical pain; it weakens our resolve to cope gracefully. So please don’t feel sorry for me. I do enough of that myself on the really bad days – the days were I spend forty-five minutes trying to convince myself that getting out of bed is a good idea.
In explaining my particular brand of chronic illness, I’m just trying to shed a little light on what I go through on a daily basis because I see some of you looking at me like you don’t know what to do with me, or what to say to me. One day, I’m laughing and smiling and the next my face in pinched and I’m having a hard time moving around. Unfortunately, this is the daily struggle that I have come to own and make allowances for. I understand it’s hard to determine whether I’m having a “good” day or a “bad” day without actually knowing me well. There might be some physical indicators – I limp slightly when I walk; I wince when I flex certain joints; I shift a lot in my seat while trying to find a comfortable position. The emotional indicators are much harder to see. So, if I ramble a bit, I’m sorry. It can be attributed to two things, a very specific symptom of Fibro called Fibro Fog (which I will attempt to explain later), and the inability to find the right words.
Now, with that being said, let’s start at the top and work our way down – the technical first and then the practical. The term "fibromyalgia" derives from new Latin, fibro-, meaning "fibrous tissues", Greek myo-, "muscle", and Greek algos-, "pain"; thus the term literally means "muscle and connective tissue pain." (1) It sounds pretty straight forward, doesn’t it? It’s really not. I’ll start with the basic symptoms (the ones in bold italics are ones I either experience daily or often enough to warrant acknowledgement), which include:
Chronic and widespread muscle pain
Joint and muscle stiffness upon waking or staying in a position for too long
Tension or migraine headaches
Jaw and facial tenderness
Numbness or tingling in the face, arms, hands, legs, or feet
Reduced tolerance for exercise
Muscle pain after exercise
Swelling of hands or feet, or the feeling of swelling (without actual swelling)
Painful menstrual cramps
Tingling or burning in the arms and hands
Rapid, fluttery, irregular heartbeat
Weakness of limbs
Moderate to severe fatigue
Anxiety/Free floating anxiety
Sensitivity to odors, noise, bright lights, medications, certain foods, and cold
Difficulty speaking known words
Poor balance and/or coordination
Short-term and long-term memory impairment
Diminished attention span
Inability to recognize familiar objects or surroundings
It’s a lot to take in, right? Trust me, everyone ever given a pamphlet or the “this is your diagnosis” speech from a physician feels the exact same way. The endless list of symptoms, the host of medications that need to be taken daily - it’s all so overwhelming that you just sort of sit there in a daze trying to comprehend it all in the minutes it takes to read it. But here’s the awful truth, the symptoms I’ve listed only cover what people are comfortable in talking about with their doctors. There are, no doubt, more symptoms but these are the major ones and not every Fibromite (a term coined by those with Fibro for those who have been diagnosed with Fibro) suffers from all of these symptoms.
I’m almost done with the technical mumbo-jumbo, I promise.
There is no blood test to determine if you have Fibro. What most doctors will do is perform what’s called the tender points test. There are 9 pairs of tender points a physician will put pressure on. If pain is experienced in 11 or more of these spots (in addition to other varying symptoms), you’re diagnosed with Fibro. I experienced moderate to severe pain in 16 of these spots – the worst being in the hip region where I jerked away from the doctor so hard I actually landed a foot away from the exam table.
|Isn't this grand? This is the only "real" way to test for Fibro, and why a lot of people don't believe it exists - because there's no hard proof that it does exist. Not really.|
That being said, I was diagnosed more than a decade ago with this. A decade ago, Fibro was viewed very differently than it is now. Back then, most doctors didn’t believe it was an actual disease since it couldn’t be viewed under a microscope or determined with a blood test. We were considered hypochondriacs and told to go home. In most of our homes, our spouses and family and friends didn’t believe there was anything wrong with us because the doctors didn’t believe anything was wrong with us. We were considered liars and fakers and attention seekers.
When people call you crazy and an attention whore for so long, you almost start to believe it. You would believe it if it weren’t for the constant pain and fatigue and the fractured sleep. There was something wrong with me. I knew there was something wrong with me. There had to be something wrong with me. People don’t normally feel this amount of pain when they do simple things like walk up a set of stairs or do the dishes; they don’t look and feel so tired; and why will no one believe me when I tell them this?! No one believed me – not my husband, not my best friend – my family was too far away to be a daily part of this, so I didn’t talk much about it on the phone with them.
This is how I lived for two years, going from doctor to doctor, being told each time that there was nothing wrong with me. Until I found my current general practitioner (he’s retiring soon and I have no idea what I’ll do without him because I doubt I’ll find another doctor as sympathetic as him, or one who listens as well as he does – when I tell him certain medications either don’t work or make me feel weird, he switches things around to find a better treatment cocktail). I sat in the exam room and cried as he tried to decipher the words I was saying. Thirty minutes and half a box of Kleenex later, he looked at me and said the most beautiful and hope-inspiring thing I’d heard in two years: I believe there’s something wrong, and we’re going to work together to figure out what it is – no matter how long it takes.
With those simple words began the two year journey to specialists that were up to and more than three hours away from the small town I call home. X-rays and CAT Scans and MRIs and so many muscular tests I thought I was going to scream. (Side note – the test for carpal tunnel – PAINFUL; it involved weird, bendy needles and machines and having muscles contract with the needles still stuck in them; I cried and it took weeks to recover.) Finally a rheumatologist got it into his head to perform the tender point test and bam, just like that, I had a diagnosis.
My primary and I went through an additional two years of trying various combinations of medications to help manage the symptoms and pain, because that’s all we can do. Manage the symptoms and pain. There isn’t a cure. If anyone ever tells you that they had Fibro but a change in lifestyle or location made it go away – they were misdiagnosed. Fribo doesn’t just go away. The symptoms lessen and worsen depending on a multitude of things. But it doesn’t just disappear. There are millions of us that wish that were the case – even if it meant living on an island surrounded by a bubble. At least there’d be no pain.
Recently, connections have been made in the brain when it comes to how Fibro works in the body. So, I guess technically Fibro is all in my head. It’s just not psychosomatic, it’s neurological – the pain senders/receptors in my brain are essentially working overtime (think a toddler hopped up on sugar without a nap). The little area in my brain that processes pain has decided to take over my entire body and make life a both a little miserable from time to time and a little… adventurous?... because I never know what my day will hold in terms of symptoms or pain – most people with Fibro will fluctuate during the day and night, feeling okay at times and feeling much worse at other times. Fun disease, right?
Now on to the difficult part: explaining how it all feels. There’s nothing like giving myself challenging subject matter to write. In my travels online, there have been a lot of people that attempt to write about chronic illness and invisible illness. Some have been very good, some have been average and some just don’t make sense at all.
The Spoon Theory (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/) has some very good points and is adequate in explaining how we have to pick and choose what we do carefully in order to maintain the status quo. It talks about how some of us have to think a little further ahead to the consequences of doing too much, which is true. Some of us do this, but we do it so often that it becomes second nature and automatic (if I do this today, I’m doing to pay for it for three days, so is it really worth doing today). There are a few things she says that I don’t agree with. One of them being, “I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.” With the mentality and attitude like that, you’ll alienate the friends you have and they’ll constantly worry that you’re taking on more than you should when you decide to do something fun with them. Yes, it uses up some of our precious resources, but most of us would gladly live with the added fatigue and soreness because its human interaction with the people we love, and no person can live completely without human interaction. For most people, spending time with loved ones outweighs the physical ramifications of doing too much. It also alienates the people in your life that are healthy by telling them they don’t really think about what they do every day, they make the wrong choices. After all, you would do things differently because you somehow see a little better due to the illness you have that keeps you from doing the things you need and want to do.
Then you have Spoon Theory Garbage (http://itwaslupus.tumblr.com/post/2710855701/spoon-theory-garbage) which is pretty much the anti-spoon theory. Or, maybe not the anti-spoon theory so much as the author just doesn’t like the way the “spoonie” community treats people. She’s pointed out that the “spoonie” community has alienated people and made those with different viewpoints feel like their symptoms are less severe than theirs and therefore their opinions don’t matter. Invisible illness sufferers have enough enemies (pain, fatigue, uncontrollable symptoms, sleeplessness, medications, doctors, non-believers, people that don’t understand) without attacking each other. She also pretty much makes the same point I did above by responding to the same phrase with this: “In short, my time is fracking precious, but I’m choosing to sacrifice it to the God’s of agony that ruin every moment of my existence in order to spend time with you. So be greatful you privileged healthy person, you.”
But, Beth, that doesn’t explain to me what you’re feeling on a daily basis. To which I respond, do you know how hard it is to find the words? I’m trying. So again, I’ll start from the top.
** I should note that not every fibromite feels symptoms the same way. Each person experiences things differently, so this is just how I feel during particular times.
** I should note that not every fibromite feels symptoms the same way. Each person experiences things differently, so this is just how I feel during particular times.
The only way I know how describe the normal aches and pains I feel each day are: a) remember your last bout with the flu? You went through body aches, high temperature, sleepiness and general blah. That’s the type of body ache I normally feel, all day, every day. Or, b) for those that have never had the flu, have you ever lifted something a little too heavy or maybe worked out for the first time in more than a week, or started a new workout routine that features muscles you haven’t used in a while? The morning after, those muscles are sore, really sore, and you have trouble moving normally. That’s the feeling. Now, sometimes randomly, I’ll get this weird itchy feeling (usually on my hands, wrists, forearms and feet), almost as if little fiery bugs are crawling just beneath my skin. It can feel a lot like pins and needles for most people, only itchier. The downside is, if I scratch these little irritants, I end up getting hives in that particular area. It’s uncomfortable, especially on the top of my feet, but not painful until the itchiness becomes unbearable. Headaches are also a common thing, almost a daily thing – but you all know what those feel like because we’re not the only sufferers of headaches.
Remember the flu-like/day after workout feeling? Now, add to that a random sharp, radiating pains originating from a specific point in your body. Mine is usually my hips or wrists. Every few seconds, a new wave washes through the body. How to explain? Have you ever stayed sitting in a specific position for so long that your knee or ankle joint is painful to move? You stand up and suck in a really quick breath because putting pressure on it, or turning the joint sends a sharp pain shooting up your leg and into your brain. It’s that, only without the need for movement. That’s what the joint flare ups feel like. The muscle flare ups feel a little differently. Ever have a sudden muscle cramp in the bottom of your foot? It’s that exactly, just in whatever muscle it decides to attack during that particular flare up. These are the days you might see me needing the help of a cane or some other object like the wall to keep myself steady as I’m walking.
|The people that know me well, know when this happens. Everything from my attitude to my personality changes when this happens.|
Most people get a solid block of sleep, usually spanning somewhere between 4 and 8 hours a night. On a good night (a non-flare up night), I average about 3 to 4 hours of sleep – even if the light is off and I’m in bed for 8 or so hours. Staying in one position for too long causes a mini flare of pain that registers in my brain and causes me to wake up enough to stretch out and find a new position to lay in (difficult when you have a dog, a cat and a kitten that all love to cuddle). These stretching episodes tend to happen with random frequency, usually a minimum of once an hour and a maximum of six or seven times an hour. On flare up days, forget sleeping more than two hours total in a night. Because the sleep is fractured, I don’t spend a whole lot of time in that REM place where the body rejuvenates itself and the mind works through the day’s problems. I spend enough time there not to go absolutely insane, but not enough to feel a whole lot better in the morning. On the plus side, though, I spend more time in that space between sleep and awake which means I can remember more of my dreams. Though, now that I think about it, I’m not so sure if that should be listed in the pro column.
|Recovery time for certain things can take up to a few weeks, depending on how badly I've overextended myself, which is why I have to choose carefully what I do.|
During the week, I have to set my alarm clock thirty to forty-five minutes earlier than I need to get up, strictly due to the fact that when I first wake up, my muscles are too sore to just jump out of bed. That half an hour is used to get out of bed by degrees so I don’t inadvertently hurt myself. Don’t get me wrong, I can just roll out of bed and have many times due to emergencies, I just know I’m going to pay for it later in the day (and will continue paying for it for up to a couple of days). I tend to shower in the evenings, because it’s just easier for me to do so and the heat from the hot water helps relieve some of the aches from the muscle pain, also, mornings are a bigger bitch to me than evenings and nights. So, what would normally take you ten or fifteen minutes (to convince yourself that you do, actually, have to get out of bed and go to work), takes me about thirty to forty-five minutes. It’s not that big of a deal, it’s just the allowances I have to make for myself and the time required to make those allowances.
|I swear it sometimes feels like I'm going insane. I know I know the word I want to use, but it's never there when I need it to explain or describe something.|
Nothing sucks quite as much as Fibro Fog. The physical pain can be moderated (mostly) with medication, but there is nothing that can be done for Fibro Fog. You know that feeling you get when you walk into a room and you forget what you were going after as soon as you stepped into the room? Yeah, it’s that, only it doesn’t just encompass that one task. It’s not being able to remember names or faces or birthdays or anniversaries or what you had for breakfast or if you remembered to take that stupid freaking pain pill that morning. It’s like you’ve taken too much cold medicine and you’re walking around in a haze. You can see and hear everything around you, but only about 20% of it makes any kind of sense at all. If I stare blankly at you when you start talking to me, it’s not because I’m disinterested in what you’re saying. Most of the time when that happens, my auditory things are telling my brain that you’re not speaking English and I’m mentally responding with, no habla espanol. It’s funny, except when it lasts for more than twenty or thirty seconds. Then it just gets scary. So if I forget your name, or can’t for the life of me remember your birthday, I’m sorry. It’s not intentional. I just have this fog that likes to tamper with the data retrieval part of the whole memory thing. It won’t get better, so try not to get frustrated if you have to remind me of things multiple times – like I have leftovers in my fridge. I always forget that, and food ends up going to waste.
With all of that being said, I’d like to reiterate, I didn’t write this up looking for pity. Sympathy and support and words of encouragement are always accepted and appreciated, but pity is one of those killer words and emotions that just sucks everything out of you. I merely wanted to try and explain what I go through because a few people have given me the “I want to ask questions” look, but they never do because they’re probably not comfortable in asking or don’t know which questions to ask or think I might get frustrated or upset if they ask. If I didn’t answer the questions you have personally, I don’t mind being asked. I promise. I’ll think carefully and answer them as honestly as I can. Information is power and the more information that gets out into the world about these invisible illnesses, the fewer people make statements like, “Fibro doesn’t exist” or “Fibro is imaginary.”
This next little part is for my friends, because, no doubt, you now have concerns about asking me to go out and do things like go to the movies, or just hang out at one domicile or another. Don’t. Don’t question whether or not I’m physically up to it. I know my limitations and that’s my worry, not yours. If I’m not up to going out, I might suggest doing something a little more low key. If I’m feeling worse than normal, I’ll warn you that I’m not feeling great, but I will always want to see you. Y’all are my family and if I absolutely couldn’t do it, I’d let you know. Just keep inviting me to do things, keep showing up at my apartment with a night filled with talking or movies or food or crafts. I’d rather deal with the aftermath and see you than be physically “okay” and not see you. So, stop worrying! I mean it. Just take it on faith that some days I feel like I can accomplish a lot. Then there are days like these:
|For me, it's my bed. My couch is fine and dandy, but my bed is the most comfortable place in the world - even if I'm not laying down in it.|
And now, in closing, I’m going to provide you with a list of things most people with invisible illness hate to hear. My responses are snarky only because I’m so completely frustrated with these statements and I find that being nice about it rarely make people stop saying these things to me.
It’s probably just stress. (Sure, stress can be a trigger but it’s not what causes Fibro.)
My (relative, spouse, friend) has it, and they manage just fine. (Well bully for them. Each person experiences things differently, including chronic pain and fatigue.)
You’re just looking for attention. (Actually, I’m not. I’m just looking for a little understanding and patience. A little compassion would be nice, too.)
But, you don’t look sick. (If I looked on the outside the way I feel on the inside, you’d run screaming in the other direction. Be grateful you can’t see.)
You need to exercise more. (Because the flare up that exercising would cause wouldn’t be more painful than my normal days.)
You’re not feeling better yet? (I see you haven’t developed a sympathetic bone yet.)
Maybe you need an anti-depressant. (Do you have a medical degree to go with your unprofessional, unsolicited advice?)
You take too many medications. (I take the number of medications needed in order to function like a normal human being.)
I keep seeing (blank) medication advertised, have you tried that? (Yes, I have seen that medication. No, I don’t have an extra $200 laying around every month to pay for a prescription that in all likelihood won’t work for me. I appreciate that I was thought of, but me and my doctor have it under control.)
It’s all in your head. (Yes, but it’s not pretend.)
Maybe if you lost a little weight, you’d feel better. (Weight is not a determining factor of Fibro. Fat people aren’t the only ones diagnosed with it.)
If you just had a more positive attitude... (My attitude is fine most of the time. It’s when a flare up lasts for more than a week that I start to get cranky.)
I wish I had time to take a nap. (I either nap or curl into the fetal position and cry. Which would you prefer?)
There are people out there worse off than you. (Yes, there are. And thank you for minimizing what I experience daily while intensifying the guilt I already feel for being BROKEN.)
You can’t be in that much pain. (Want to trade bodies for a week just to make sure?)
You need a hobby. (I have several: reading, writing, cross-stitching, photography - or were you thinking about a different kind of hobby; one that magically cures chronic pain, maybe?)
(1) Taken from http://en.wikipedia.org/wiki/Fibromyalgia
Tender Points Chart borrowed from http://mywalkinchiropractic.com