Tag Archives: living with illness

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

 

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.