This incessant noise, thoughtless chatter
is so abysmally abrasive…
It peels the soft insulation off this
It’s probably ‘a drop in the bucket’,
just a whisper in the void…
If you change your angle, change your tune
evasive action is deployed.
Lower your standard, raise your octave
– stutter “once upon a time” –
When you close your eyes to the greed of need
it’s bound to feel sublime.
Why trouble yourself with a quiet plea
from a desperate, vagrant voice?
Your memoirs are much too important, you know,
and your ignorance more so a choice.
So you stuff your face with the vestiges of
compassion you claim to purport.
Consumer lives are flashy – the rage –
buy the t-shirt to show your support.
Never notice my pain or my silent tears
is this how meaningful I should be?
My words packed away – they’ve no power here…
That voice that you stifled was me.
When there are days you have to sit down to rest after taking a shower, exercise can prove next to impossible. It can really be a pain in the… well, it’s painful. We’ll just leave it at that for now.
Exercise is important to a healthy lifestyle and a healthy body. It can lift spirits, provide immunity support, strengthen and tone, and keep everything in good working order… But what happens if exertion is the very thing that makes your body sicker? The thing that is capable of completely incapacitating you? Welcome to living in a body run by ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome). This is my nightmare.
Before I got sick, I belonged to a local gym and enjoyed going 4-5 times a week. There was a yoga class I loved, a spin class I was finally getting good at, weights that were toning muscles I had forgotten were there, and a cardio room that I used to meet my sister-in-law in so we could use the elliptical machines together. It wasn’t always easy to go and sometimes I skipped, but I tried to make make it a priority on my schedule.
Fast forward to the present. My body has undergone quite a few changes in the passing years. Harboring several different health issues and a humdinger of a coupla chronic illnesses, the gym has become a thing of the past. Almost like a fairy tale I made up to amuse myself. It’s been almost seven years since my ME/CFS diagnosis, and a couple of those have felt like the longest years of my life.
What most people don’t understand is how I can usually look fine on the outside while saying I’m so sick on the inside. Typically, I look pretty healthy. A little tired, perhaps. Certainly carrying more weight than I should and than I used to… In general, however, I look like your neighbor or your sister or someone you would pass at your gym. Meanwhile, the inside of my body is a wreck. And one of the main things unseen is how it can take every bit of energy I have to make you believe I feel as well as I look. *sigh* It’s something of a curse, at times, because people with ME/CFS have to spend a great deal of time trying to convince people that they really are ill. Even though some are extremely ill.
Please believe that I am not lazy! I wish my body was cooperative. I wish I could exercise like people tell me I should. The truth is, everything goes haywire if I push too hard. If you have to sit and rest after washing a sink of dishes, you’re probably not at your healthiest… And while I am MUCH healthier than severe ME/CFS patients, it’s nowhere near the person I was. (For an absolutely heartbreaking look at what severe ME/CFS can look like, please read this recent article from The Washington Post about Whitney Dafoe.) Some patients can’t leave their homes – others are confined to their beds. It’s a blessing not to be stuck in bed, and a continuous source of gratitude to know I am not housebound. I walk as often as possible, manage to work 20 hours a week, and still have enough energy at times to go out with friends and family to a movie or restaurant. Heck, when all the stars are perfectly aligned, I might even manage a short hike!
What I would ask you to know, however, is that it comes at a price. When a reasonably fit, healthy person hits the trails or goes for a run they might have sore muscles after an intense workout, but they can get back out and do it again within a day or two. For someone living with ME/CFS, exertion of any kind (physical, mental, emotional) can lead to days, weeks or even months of recovery time. In some cases, overexertion is the reason a mild or moderately ill patient ends up permanently bedridden. It’s a terrifying tightrope to walk. Never knowing what a few extra minutes of walking might do. Never knowing if too much housework in a day will put you in bed for weeks. Living under that black cloud of uncertainty is its own form of mental exhaustion. My body doesn’t react to activity like it should. Sometimes walking from the bedroom to the kitchen causes such oxygen deprivation that I have to lean against the counter until my breath comes normally again. There are days I may manage to get to a hiking trail, only to discover a quarter-mile in that my heartbeat has become increasingly erratic, that I’m staggering because my equilibrium is way off, or that my body temperature won’t regulate and I’m sweating profusely despite the cold or shivering despite the heat. I’ll confess – there are times I’ve had to sit down in the aisle of a store or abandon a cart full of groceries simply because my legs became so weak that I couldn’t stand anymore. It has come down to making the decision to finish a task or have enough strength to drive home. It’s frightening to be okay one moment and find yourself helpless the next… Every system of my body revolts, sometimes at a moment’s notice, and there is nothing I can do but ride it out. So many random symptoms might attack – chest pains, missed heartbeats, brain fog – just to name a few… There are so many severe potential risks to being active that, if I’m not having a good day to begin with, it really isn’t worth taking a chance.
Other times, however, I do risk it. To enjoy the outdoors, to feel like I have a life, to maintain some independence… I tell you all these things so you know the effort and energy it takes, and so you can be a bit gentle with me, or anyone else you know with ME/CFS. I would also ask, however, that you remember sometimes we dare to dream… we dare to take the chance. There are some things in life that are worth it. By asking you to understand, I’m saying you’re probably one of them.. 🙂
Pain has a language all its own. Pain and suffering mark time differently. Pain is voracious and consuming. Pain comes in many shapes and forms.
Do you ever struggle with pain? Not just the physical kind – although that can definitely stop you in your tracks! I mean “pain” in general. Physical, mental, emotional… Each type is equally draining in a way. Equally clarifying to an extent. And each takes a toll on the person wearing it around day after day.
I’ve been thinking about suffering quite a bit today. Marveling at the way it is able to barge in and command the attention of the most seasoned warrior. Considering the capability it has to lay waste to all things bright and shining in a person’s life. In any of its forms and afflictions, pain can potentially devour the stoutest heart…
The past few days have been an arduous test of inner strength and coping for me. My pain scale is out of whack compared to the norm, I think, so I won’t try to assign it a number. Let’s just say it has been ‘up there’. It’s nothing new and certainly something I’m usually adept at dealing with, but now and then it manages to make me want to stop in my tracks and curl up on the floor. That is typically the case when I’m in pain AND my empathy meter is in the red as I watch someone I care about suffering in their own private misery.
Having what is considered an “invisible illness“, I’m used to looking one way on the outside and feeling the complete opposite within. It’s actually a challenge I accept daily to put on a brave face and downplay my pain or symptom flares. Wearing that mask may not always be the best choice as it makes it more difficult for people to understand when the cracks start showing… They thought everything was fine – I seemed like I felt okay! It also increases the ‘invisibility’ sometimes.
People are fearlessly and tirelessly inconsiderate when lacking in proper information and understanding. There are a lot things that chronically ill people don’t want to hear – believe me, I’ve heard them all – but when you mask pain all the time, I guess it goes without saying that sometimes others won’t know anything at all about the private war being waged inside.
I’ve been in a lot of pain lately… although most people probably haven’t noticed anything amiss. I prefer to keep it that way, for the most part, but I can’t help but want to reach out healing hands to all the other people I know in similar situations even when I know they’re trying to hide behind a carefully constructed façade of “FINE”. I have loved ones struggling daily with physical ailments, psychological anguish, mental illness… They each go through bouts of misery and torment and I would offer them all a restorative potion if I could. This post isn’t about that, however. It’s about something much smaller in the grand scheme of things.
This post is about the responsibility we each have to offer support and healing to those around us.
There is so much negativity and hate in the world. Everyone you see is dealing with some sort of struggle that has probably taken root in the center of their lives – consuming, ravaging them from the inside out. Just because you can’t see someone’s anguish does not mean that it is not there. Just because you have struggles and trials of your own does not absolve you from being considerate of others marching along in their own grief and pain.
I’m not here to judge. But please remember that not all disabilities are visible to the naked eye. Not all pain is readily ascertained on a scale of 1 to 10…. And, unfortunately, not all hurts are healed with a kiss and a Band-Aid. Although that doesn’t mean we shouldn’t try.
My challenge to you, during this most festive and generous season of the year, is to reach out to someone who might need a friend. Someone that might need a shoulder to cry on, a companion to sit with, a confidante to vent to, or a caring hand to carry their groceries to the car. Take time to assess your own needs and care for yourself, absolutely! But bless yourself further by taking a moment to be the light in someone else’s day, as well. What may seem a small gift to you could be the greatest present of all in their eyes, and just because you are not aware of the impact of your actions doesn’t mean you shouldn’t choose them with care and compassion each day.
And if *you* are the one that has been beaten down to the point of lying curled up on the floor, please remember that people love you. People care. There are those that would give whatever they have to bring you joy and relief. But most of all, remember that YOU are stronger than you give yourself credit for. I don’t have to know you to say that I believe in you… and I hope you won’t give up the fight.
Naked is all the rage. There are reality shows designed around the concept; all types of media using skin to sell everything from fast food to clothing; stores offering organic (naked) food options; social media feeds full of explicit, unadorned thoughts and opinions… Naked is the new black.
Naked makes me afraid. Not the “stripped bare with my hiney hanging out” kind of naked. (Although that is potentially frightening as well and something that no one wants to see!) No, I’m talking about the “stripped bare to show you a piece of my soul” naked. The kind that makes a person simultaneously proud they are brave enough to share a piece of themselves and ashamed of something they kept hidden in the first place. I have a lot of things that never see the light of day. Like many folks, there are a variety of reasons for stuffing these thoughts or transgressions into nooks and crannies. Sometimes it’s as simple as being unique and deciding not to speak out against the majority… Other times, a fleeting thought that is cruel or unflattering and would reveal a less kind and correct version of me. Underneath all the surface gunk, however, I think everyone has poisonous things secreted away hoping no one will ever see. Have you wondered what happens if too many of the darker thoughts end up suppressed? I was reading a Stephen King book one day when a metaphor regarding this scenario crystallized for me, so it’s only appropriate that I quote directly from the master himself.
“People’s minds, particularly the minds of children, are like wells – deep wells full of sweet water. And sometimes, when a particular thought is too unpleasant to bear, the person who has that thought will lock it into a heavy box and throw it into that well. He listens for the splash… and then the box is gone. Except it is not, of course. Not really. Flagg, being very old and very wise, as well as very wicked, knew that even the deepest well has a bottom, and just because a thing is out of sight doesn’t mean it is gone. It is still there, resting at the bottom. And he knew that the caskets those evil, frightening ideas are buried in may rot, and the nastiness inside may leak out after a while and poison the water… and when the well of the mind is badly poisoned, we call the result insanity.”
– Stephen King, The Eyes of the Dragon
I’m not insane… no mater how much darkness I might have tucked away. It seems fairly important that we establish that before going any further. Let me also stress that there is not any implication being made about you and your mind. Okey-dokey? Good deal.
Conceptually it’s pretty powerful though, huh? It is a kind of crazy to bottle up every. little. thing. Opening one of those caskets and baring it to another soul might be a freeing experience… but it also has the potential of being fraught with fear and anxiety. When held up to the light that stark lack of adornment is oftentimes ugly. Messy. Objectionable. So we squirrel it away – another splash in the well of the mind. We breathe a puff of a prayer on the dice and roll ’em in the hopes that our luck limit has not been exceeded and the water quality within is still pure. However, there is the toxicity of the ‘thing’. Certainly that poses an eventual problem, right? The process of weighting down each thought or transgression and sending it to Davy Jones’ Locker must be noxious in some way, so it can’t exactly be healthy for the well in the long run, correct?
I’m not proposing we drop all social pretenses and niceties and start spewing a verbal lava of angst and wicked unpleasantness upon anyone that looks at us the wrong way. Filters exist for a reason and can usually be employed with at least some success. What I am suggesting is that sometimes it’s okay to be vulnerable. To show a piece of something secreted away within because it isn’t spit-shined and polished until properly acceptable for all. Maybe you should consider keeping the truly heinous schtuff under wraps… seriously. However, not all of the things we drop in that well are necessarily “bad”. Sure, they’re not all nuggets of wisdom or pearls of truth, yadda-yadda-yadda… But it seems to me that perhaps there is a middle ground there. A place where we hide things we live in fear of someone knowing, but in truth, most people wouldn’t care about one way or another. Think of all the time and energy wasted on worries that should never take up that much space in the real estate of our minds and our hearts. Sometimes it is genuinely permissible to… *gulp*… be different! To take a deep breath and go against the grain. Disregard the trend. To sum up: Legitimately be … naked and afraid.
For the last year or so, I’ve been making a concentrated effort to downsize my baggage. Take a good look at the influences in my life and chuck the negativity. I have health issues that are incredibly exacerbated by stress so not only was it a necessary plan, it was also a welcome reprieve from some of the symptoms that had plagued me. The journey has been “bumpy”, if you’d like to minimize the effort. Weeds have grown up and tried to choke the path – potholes sometimes abound. Is it worth it to keep plodding along? Of course! Is every day a success? Not even remotely! Yet there is a triumph gained when things go according to plan. Triumphant days leave me lighter, freer, with more joy and less wasted space inside. So when I find myself clinging to worry or harboring stress and giving it a place to fester and grow, instead of packaging it up and dropping it in the well, I’m trying to set myself free. It doesn’t always come easily or without a price, but dragging those ugly, toxic thoughts out into the light and proving they will ultimately fail to poison me… well, winning that struggle often brings peace.
So I challenge you. Not to go out and hurt others by turning off your filter and saying whatever hateful things come to mind. Not to make yourself feel worse by admitting something private to an audience that will ridicule or hurt you. And definitely not to go out and literally get naked. lol! Instead, I challenge you to challenge yourself and your ideas about what makes you less of a person, or unattractive, or unlovable… Instead of unleashing that vitriol within, giving it power over you that it never should have had, pull it out into the light and examine it for what it really is. Find someone you trust and get naked by baring a bit of your soul and then pay it forward by allowing them to do the same. Without judgement. Without fear. To make things easier I’ll start:
This month I:
watched as a loved and lovely person from my family passed away and I was unable to make the journey to see them and say goodbye,
struggled with health issues and tried to be strong for my husband who had his own,
lost a job I loved and had only recently found, and I am having trouble finding closure and am heartbroken,
discovered that the job loss – after being laid off from the two jobs prior – has made me feel like a failure, and my self-worth is really struggling along,
judged people in my head and got upset when I found out someone had done the same to me, and,
missed my friends and family, yet didn’t have the strength and energy to be more of a participant in life, and didn’t know how to ask them to understand.
And, since I’m trying to encourage you to dig under the surface –
I began to achingly come to terms with the fact that my husband and I will never become parents despite my lifelong dream of having a house full of children of my own… While dealing with this staggering realization, I have also had to confront my jealousy, envy and grief over the numerous friends, acquaintances and family I know that are celebrating children of their own and still find a way to share their joy.
How’s that for a confessional?
It hurts to have all of that going on, I’m not gonna lie. But you know what’s even more difficult than going through it? Reliving it again and again because I’ve tucked it inside, hidden behind the mask, forced to watch it all on the loop I allow to play over and over in my head. It’s too much and I’m too tired. Who has room for all that negativity anyway? Life is too short and all that jazz. In the words of Dory, “Just keep swimming! Just keep swimming!”
So are you up for it? It’s not a miracle cure and it’s not something everyone will find is easily implemented. All of the things I listed above are still present. Shining a light on them didn’t make them go away, nor does it take away the sting of knowing I won’t go to work tomorrow or find a plus sign on a pregnancy test next week. These things DO take time, you know. Is it scary? Making changes usually is. Will it be hard? I’m not going to lie and say it’ll be a breeze… The question you have to ask yourself is – will it be worth it…?
Life is messy. That’s just a universal truth! But you know what the great part is? There are showers for that kind of thing. And everyone knows you have to get naked before you can truly get clean…
I never know quite how to start a post about Fibromyalgia and Chronic Fatigue Syndrome… There are so many things that go through my mind that I can’t always organize them into anything that I think is interesting or informative. Of course, there are also times that my brain fog is so bad that it’s not possible to post anything at all. Those days are always rough… The last 24 hours or so have been rough for a different reason. A burning, tingling, roving pain reason.
Since my diagnoses I’ve spent more than a bit of time researching clinical studies, doctor’s websites and the blog posts of other people like me. With both CFS and Fibro there are many symptoms that I’ve never experienced. One of the weird quirks of each illness is the symptom set is different for each person. There’s a certain set of criteria that each patient must fall within, but the rest of the symptoms vary from person to person. I’m so thankful that other people share their thoughts and insights – it’s reassuring to know I’m not losing my mind – but oddly enough, it creates strain at home. Has anyone else experienced that? Earlier this evening I was talking to my husband about a new kind of pain that’s been bothering me in the last 24 hours. He asked me if I had ever considered whether or not reading information from other people ever ‘encouraged’ me toward adding new symptoms to my list… A very legitimate question. It does happen and I can’t say I haven’t done it at some point. With all of the information available on the internet – good and bad – it’s easy to become convinced that health problems are much worse than they actually are. Researching a set of symptoms can return results ranging from the common cold to rare, untreatable diseases. I try not to do that… If something is wrong with my health, I try to seek care and advice from a healthcare professional. However, sometimes with CFS and Fibro it isn’t that easy. There isn’t a doctor in my area that specializes in either of my conditions and the field is still undecided about what causes either illness and what courses of treatment work best. The combination can bring about less than satisfactory results when I visit my doctor’s office. Although I trust and respect him, there are days I’m just not up to the stress of not having concrete answers and solutions.
My husband does his best to understand all that and tries to provide support any way he knows how. Problems only arise when I need one kind of support and he tries to provide another. Asking if I’m adding symptoms due to research was his gentle reminder of the pitfalls of relying on so much outside information… I’m grateful he’s looking out for me, but it’s not easy conveying how helpful it is to put a name or description to a symptom that I thought might only exist in my head. Being able to breathe a sigh of relief because I’m not, in fact, going crazy and there are other people who understand the things that are happening to me. Even the things I haven’t spoken aloud to anyone. I’m doing my best to try to communicate with him that part of having ‘invisible’ conditions means that I need positive, uplifting support no matter what. On the flip side – I hope that I’m appreciative enough of the effort that he’s making. My health concerns him too, and I know he’s just worried and trying to help. Living with this is a strain on both of us and I hope that we can continue to refine our communication styles and grow stronger together… Even though he won’t ever fully understand what I’m going through, I can’t imagine dealing with this without him! We may not always see eye to eye and I know he can’t read my mind and always anticipate what I need, but I’m blessed to have someone who loves me and tries to do what he can to bring me peace, hold my hand and walk by my side. Even in the midst of all this pain and confusion, I’m so very blessed… 🙂
I’ve been kind of invisible on the blog lately and want to apologize! It would be easy to say that looking for a job, running an Etsy shop, running errands and doing household tasks, studying, taking photos, etc, etc, take up so much time that I’m not leaving enough time to blog. Yeah, well… that wouldn’t really be true. There has been time to read up on what some other bloggers are doing, find articles pertaining to various camera related issues, and watch the occasional show on TV (hubby and I love “The Big Bang Theory“, among others). Truth is, I’ve been dealing with some yucky pain and fatigue issues lately because of my CFS/CFIDS/ME and Fibromyalgia. (Please note that although both links open the Center for Disease Control website, it is not necessarily the most informative. I chose to link to it because it is a trustworthy and reputable source.)
Living with chronic illness is one of the most difficult things I have faced in my life. Please understand – even though I have been diagnosed with both of these debilitating conditions I am in better shape than a lot of people out there. There are days, sometimes several in a row, that my life resembles that of someone who is completely normal and pain-free. At other times, however, I’m not as lucky. To say that it’s been an adjustment for me would be a huge understatement! I’ve lived in this body my whole life and gotten to know its rhythms and functions… what it’s capable of and what limitations it faces. CFS and Fibro caused me to relearn most of what I knew, but I have all the time in the world to do so since it’s my body 24/7 for 365 days each year. It’s not just about me, though, and that is unfamiliar terrain that it is taking longer to learn to navigate.
My husband is a wonderful man. Like anyone else I know, he has his issues and struggles and faces his own internal and external battles on a daily basis. The last couple of years have brought him pain and misery with a knee injury that has created physical constraints that he had never faced before. Chronic pain doesn’t always make him a lamb to live with, but we manage pretty harmoniously, for the most part. I can understand dealing with aches and pains every day and try to support him in any way I am able. It’s tougher for him, though… until recently constant pain wasn’t something he had to deal with. Whenever I need a cheerleader he’s quick to step up and give me a pep talk or support, and he’s even been great about that when it comes to all the medical issues I’ve faced over the last few years. Yet, he can’t really understand what I’m going through and sometimes it’s so difficult to explain that, like anyone in these circumstances, he gets frustrated with me and things get a little tense.
I love my hubby and want to be a good wife. There are times when I even feel guilty because of things I’m not able to accomplish in a day that most people could complete in an hour. Whenever I’m in those dark times I’m able to pull through because I know what’s going on within my body is out of my control. My husband doesn’t have that comfort. Every once in a blue moon we have to try a different approach to figure out how to make everything in our daily lives work smoothly when I have this invisible illness that can sideline me for hours or days. It’s tough – I’m not going to lie! And situations like this can do one of two things – break down a relationship or strengthen it. My hope and prayer is that the way we deal with this reflects the latter…
On that note, I’ve been reading several different sources about communicating with people about having an illness they can’t see or understand. There are lots of articles and resources out there for caretakers, spouses, families and friends of people living with a chronic illness, but there are two that really spoke to me. I would highly encourage reading them if you, or someone you know, goes through each day with a chronic condition. The first is “The Spoon Theory” written by Christine Miserandino. She is a speaker, journalist, blogger and patient advocate, and she lives with Lupus. Her spoon theory helped me figure out a way to explain my limitations in a way that other people may finally understand! The second is an “Open Letter to Normals” (not sure of the author) and addresses the way I feel sometimes when someone judges me without knowing what is going on behind my mask. Both of these have a completely different approach but could be equally helpful. I urge you to read them if you know someone living with some sort of illness/disease, or read them and pass them along if the person suffering is you…
I’ve rattled on enough, I think. My husband is actually waiting for me to get off the computer now so we can meet some friends for lunch. : ) There’s just one other thing I’d like to add before I go. It’s difficult sometimes, I confess, to have patience about things that I can’t understand. Although I wish it was easier for my husband, I am actually very happy he doesn’t understand. That he can’t empathize. This is my disability and I wouldn’t wish it on any other person! The fact that he struggles with it only makes me more thankful that he doesn’t know what it’s like. He is a brave, loyal, loving man, and I’m lucky and blessed that he chose to be with me – broken and all! I would keep him from having to deal with this at all, if possible, but I can’t… So instead, I’m doing my best to give him an insight and some tools to assist him, and hoping that if you’re facing something similar maybe it helped you too. 🙂
Observations from an artist, photographer, and dreamer…