Tag Archives: CFIDS

No Solicitation

This incessant noise, thoughtless chatter
is so abysmally abrasive…
It peels the soft insulation off this
pasteurized conversation.
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.

No solicitation

 

 

 

 

 

 

 

 

~h

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This is My Body on Exercise… Or, Risks of Exertion as an ME/CFS Patient

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.

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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 illEven though some are extremely ill.

A bad day with my puppy protector. I could not handle any outside noise that day so I had to wear ear plugs, my head was pounding so I was using an ice pack, but my body temperature was lower than normal and wouldn't regulate, so I was covered with two blankets. *sigh*
A bad day with my puppy protector. I couldn’t handle much noise that day so I was wearing earplugs, my head was pounding, hence the ice pack, but my body temperature was lower than normal and wouldn’t regulate, so I also had two blankets covering me. *sigh*

 

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!

hiking boots

 

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..  🙂

 

One of my favorite things to do when there *is* leftover energy is to get outside and hit the trails.
One of my favorite things to do when there *is* leftover energy is to get outside and hit the trails.

 

 

As always, thank you for reading!
~h

 

Choose Kindness & Compassion This Season

Don't Confuse Bad Days for Weakness

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.

 

don't look sick

 

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.

i can do it

 

~h

If Someone You Love Has a Chronic Illness

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.  🙂

Being an Invisible Patient – Living With CFS / CFIDS / ME

I made pumpkin bread today.  Both sides of my sink had some dishes – not a lot, but enough to feel like I needed to wash them before baking – so I washed them first.  Since I don’t have a dishwasher it took about twenty minutes to get everything into the dish drainer, but then I was ready to bake!  It was just a simple mix of adding eggs, pumpkin and a couple of other things to the dry ingredients, but by the time I had finished folding in the dry mix I was so tired I had to go sit down.  There is something extremely wrong about that.

….

I’ve always heard that if you write, you should write what you know.  This is what I know:  with all things considered, I am actually one of the lucky ones. 

It would be easy to say, “The worst thing about having Chronic Fatigue Syndrome is ____”, adding any ailment or pain to finish that statement.  However, what is truly the worst thing about having Chronic Fatigue Syndrome is being an invisible patient.  Living each day with the knowledge that many people have no idea what kind of misery you go through and/or don’t believe there is anything wrong; hoping to receive support and understanding from friends and loved ones… As I said – I am actually one of the lucky ones.

Although I despise the moniker “CFS” it is the most widely accepted and utilized name in America.  Other names are used – Chronic Fatigue Immune Dysfunction Syndrome, Myalgic Encephalomyelitis – and many patients and advocates have tried to have to have it changed to one of these, or something else entirely, in order to reduce the trivialization that occurs by calling it CFS.   Of course, figuring out what to call the illness doesn’t matter that much if faced with a medical professional that doesn’t believe the condition even exists.  Unfortunately, there are many physicians that fall in this category, choosing instead to think that the person is a hypochondriac, drug seeker, suffering a psychological disorder, exaggerating their symptoms, or just lazy.  Either way, misdiagnosis or a medical name that trivializes the condition are two of the main reasons that patients are ignored by medical professionals and their communities alike.

I was diagnosed with Chronic Fatigue Syndrome over two years ago.  Suffering from a sudden onset of flu-like symptoms, I began a series of visits to my general practitioner and underwent several blood tests to try to determine what was going on with my body.  One of the blood tests showed an abnormally high Epstein-Barr level.  As my doctor went on to explain, it’s not uncommon for Epstein – Barr virus (EBV) to show up in a blood test since it’s one of the most common infections in the world – it’s what causes mononucleosis.  Much the same as a patient that has had chicken pox will continue to carry the herpes virus that caused it for the remainder of their life, people who have had mono/EBV will continue to carry Epstein-Barr; the body just produces antibodies so you don’t “catch it” again.  In most cases it never causes a problem again, but in some circumstances the level can become significantly high and recreate the same symptom set as mono – pain and discomfort, sore throat, headache and body aches, extreme lethargy… Instead of being around the 100-120 range, as expected, my EBV levels were almost 20 times that.  So, my doctor sent me home with instructions to help me through and signed off on my chart thinking everything was okay.  If only it had been that easy!

The following months found me continually exhausted – sometimes unable to get out of bed until the middle of the afternoon, and then only to move to the couch in the living room.  Going to work and focusing on daily routines was agonizing, and my ability to concentrate on complex problems or situations was almost gone.  It was like living in a fog.  My throat hurt regularly, but it wasn’t red and there didn’t seem anything to attribute it to.  Even when I wasn’t very active my joints and muscles felt tight and sore.  When I would be sitting in a room with my family, they would be comfortable in short sleeve shirts and, unable to regulate my body temperature, I would wear a sweatshirt and have a blanket.  Migraines had been an occasional problem for years, but suddenly I had an onslaught of headaches that seemed to originate from weird places on my head.  Every time I thought I was going to have a good day, I would realize several hours later that it was not going to work out that way.  Imagine having a horrible case of the flu every day and you’ll begin to understand what it was like.

One of the reasons I count myself fortunate – through it all, my doctor refused to give up.  He took each new symptom and tried to find the root of the problem.  Whenever I came in with something that required more specific knowledge, he would refer me to a specialist.  The gastrointestinal problems and acid reflux landed me in the outpatient center at the local hospital for scans and scopes.  Mysterious aches and pains, along with inconclusive blood test results sent me to meet with an oncologist.  I had x-rays, scans, endless questions, countless injections and blood draws.  It would have been a nightmare if I hadn’t suffered so much outside of the different doctors’ offices.  After meeting with my family practitioner off and on for over six months and being tested for Lyme Disease, Lupus, and Cancer, among other things, he finally gave me the news that he thought I had Chronic Fatigue Syndrome.  It was as if a blessing and a curse had been handed to me simultaneously.  I had no idea what the implications and future difficulties would entail, but I left his office that day with a diagnosis and if only for a moment, felt briefly relieved.

My joy was short-lived as I began to discover the appalling lack of information about my condition.  It took an even steeper dive when I realized that many believed it was a syndrome that actually existed.  Time after time I had people tell me that they must have CFS as well because they were always tired.  After the third or fourth person said that I began to rethink sharing the information at all.  After waiting for months to find out what was wrong so that I could begin treatment and get well, I learned that there was no prescribed treatment, no type of prescription or pill that I could take.  To make matters worse, it appeared that aside from my doctor, very few people even considered me sick.  Most of them just thought it was in my head.

Understandably, when someone doesn’t look or seem ill in a traditional way – feverish, weight loss, gaunt features, and conclusive test results – it can be difficult to comprehend what is going on.  As a society, we are conditioned to believe that any significant illness has some sort of test that proves it exists beyond a shadow of a doubt.  There are nose swabs to detect influenza, horrendous throat swabs for determining if someone has strep throat, blood tests for cancers or diabetes… And if none of that works, we can always try x-rays, EKG’s, scans or MRI to see what’s going on.  CFS has no test.  No determining markers in the blood, no mass that shows up on a scan.  Even recognized as CFS for over thirty years (and diagnosed under other names for several hundred years), scientists still aren’t even sure what causes it.  So many people think it’s either psychological and completely in a person’s head or that it doesn’t exist at all and the “patient” is exaggerating for some reason.  Confusing the situation is the fact that one patient can present with completely different symptoms than another.  A comprehensive list of possible symptoms for CFS involves every system of the body and, when compiled, goes on for page after page… approximately 20-30 in all.  Hundreds of issues that may or may not show up from one patient to the next… Diagnostic tools vary from country to country, but there is a certain set of symptoms that a person must have for a continued length of time before the diagnosis will occur.  And that’s only if the doctor is one of the few that thinks it’s a disorder at all.  It’s incredibly frustrating, to say the least! 

My life has turned into an exercise in faith about my condition.  Even though very little funding is used to research chronic fatigue and the myriad of symptoms that patients have, I have to believe that someone will somehow make some head-way.  I try not to spend a great deal of time defending myself to non believers, although I do occasionally get criticized or ridiculed when I’m silly enough to bring it up.  After dealing with this situation for years I’ve even become quite good at recognizing the ‘tells’ of a person that thinks I’m crazy or lying:  eyes glaze over in disinterest, nose flares in distaste, lips turn down in a grimace that always makes someone look slightly disgusted with me, and quick to follow on the heels is the cessation of the conversation and I’m usually left watching them turn away to do something they consider more productive with their time.  I’ve learned to deal with these dismissals and try not to take it to heart as I’m sure I’ve reacted with negativity and skepticism to at least one person in my life. Maybe one day others will learn to try to handle me with the same sort of care.  To use an age-old argument for the existence of things unseen – I’ve never laid eyes on (insert your version here) a million dollars, but I know beyond a shadow of a doubt that it exists.  CFS requires something of the same type of suspension of belief due to tangible proof – it requires going on faith.