Tag Archives: Health

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.

ffacd0264c073d8bc7c4ce5a70f46cd3
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

Fibro Fog Hits an All-Time Low…

I’d like to say this will be an interesting and articulate blog post, but the truth of the matter is that I’m really struggling this morning and may not be able to correctly string words together into sentences.  The cognitive disaster known to many as ‘Fibro Fog’ has been my nemesis this morning and it’s not showing any signs of retreat.  Last week was difficult because of physical discomfort – nerve pain was off the charts a few times, a couple of days when I walked it felt like there were shards of glass in the bottoms of my shoes (when I even put shoes on), and a couple of days ago was exhaustion and fatigue laden…. Apparently today is “battle for the brain” and I’m the contestant.

Let me just say what’s bothering me and move on — I was trying to do some household/bill related items about 30 minutes ago and I couldn’t remember my social security number.  That is the lowest the fog has made me feel.  (Of course, just making that statement is relying on me to remember a time that it has been worse… and since I’ve just proven that my memory is off-the-charts bad today, I’m not exactly trustworthy.  *sigh*)  After being unable to recall more than the first three numbers and that there might be a ‘4’ or a ‘5’ somewhere in the remaining digits, I was stumped.  Absolutely and completely stumped.  I immediately burst into tears and now want to go back to bed and lay there under the blanket until my mind has returned from its sojourn in la-la land.  (It seems I’m not struggling with word recall today – that was Saturday during my fight through fatigue.)

I’m ashamed.  Embarrassed, humiliated.  All of those icky words that make you want to duck your head and avoid eye contact.  Luckily my husband was the only one to witness the demise of my memory and seeming departure of my intellect, however, he quickly became uncomfortable with the force of my sobs and went back to doing some work around the house.  I can’t really blame him, but sometimes it’s easy to want to lash out because of his obliviousness to the terror I feel and the overwhelming sense of dread that surrounds me like a cloud.  Questions swarm to the forefront of where my mind used to be – Am I going crazy?  What if this never gets better?  How long will the fog last this time?  What if it doesn’t go away?  It’s not his fault that he doesn’t understand – I’m actually glad he has no idea what this feels like!  But of all the things that fibro and ME/CFS are stealing from me, this is one of the worst!

There’s no real point to this post except to offer empathy and understanding to the people out there that DO know what I’m talking about.  That have a real fear that they wouldn’t be able to tell someone their phone number if caught at the wrong time.  The people who take precautions so that if they’re asked for their home address they’ll have some sort of back-up in case they don’t know where they live…  It’s horrible and scary and humiliating… and I understand.

much love & support,
~heath

Go watch the video on this great post & read some other views:

http://fibromodem.wordpress.com/2012/05/28/fibro-fog-feels-like-early-dementia/#comment-1048

ME/CFS & Fibromyalgia Awareness Day

May 12th – technically today – is ME/CFS and Fibromyalgia Awareness Day.

I wish I had time to go into how important this is and how many people are impacted by these medical conditions, but I only have a few minutes to write now.  Hopefully I’ll be able to drop back in later and give you better information, but I was on my way to bed and wanted to take just a moment to put this out there while there’s still time for someone to read it and show their support.  🙂

May 12th was chosen as the awareness day for many neuroimmune diseases – including Lyme Disease, Gulf War Illness,  and MCS or Multiple Chemical Sensitivity.  The date was chosen because it is Florence Nightingale‘s birth date and Nightingale was believed to be the first person with a recorded case of chronic fatigue syndrome.

There are many different views of how to label Myalgic Encephalomyelitis, also referred to in some countries as Chronic Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome.  Regardless of how it’s labelled or what it’s called, it’s a complex condition that involves serious central nervous system abnormalities and irregularities of the cardiovascular and immune systems.  I’ve heard it referred to as a neuroimmune disease, an immune dysfunction syndrome and a crock of phoo-ee.  In the end, what I can quickly share with you is that it robs a person of their health and vitality.  It can turn the healthiest athlete into a bed-ridden hermit.  The cognitive impairment and physical exhaustion that occur are so profound that at times someone with this condition may feel like there is no hope of ever leading a ‘normal’ life again.

Many people with ME/CFS also suffer from fibromyalgia – they often go hand in hand.  Fibromyalgia is a disorder that causes widespread musculoskeletal pain along with cognitive issues, fatigue, sleep disruption and memory problems.  The list of symptoms for fibro is lengthy (although not as lengthy as an 18 page symptom list I’ve read for ME/CFS) and varies from person to person, but can include IBS (irritable bowel syndrome), migraine headaches, neuralgia (severe nerve pain) and odd things such as allodynia – hyper-sensitive skin.  The most recent one I’ve been dealing with is neuralgia and it can be pretty horrific.

I wish I had more time to add some good links of information and go into the struggle of trying to live with these conditions in this post… however, my point of writing this was to ask you to please show your support.  Many may not know that you’re supporting anything and you may not even have the opportunity to explain to anyone, but someone out there will probably notice and be grateful…  As with most “Awareness” days May 12th has a color scheme.  🙂  Wearing something blue shows support for ME/CFS and wearing something purple shows support for fibro.  I really needed a blue and purple striped shirt since I have both, but I’ll probably go with blue since the ME/CFS has taken more of a toll on me.

I would personally like to thank you for just taking the time to read this.  It’s hard enough to live like this and even more difficult when I’m misunderstood because of it.  Speaking out is the only way to educate people and dispel the misconceptions.  I choose not to be silent.  I hope you will too.

🙂

 

 

Welcoming Spring With the Plague

Okay, maybe it’s a bit of a stretch to call it the ‘plague’…  Please humor me since I’m the sick one!  🙂

Before I begin a mini-rant I want share a fact about me – I love kids!  I enjoy being around children of all ages and have great respect for parents in general.  Convinced?  I hope so, because I am being sincere!   🙂  Now that you know my general attitude about kids let’s move on to a different, although related, topic: sick kids.  More specifically – taking undeniably sick kids out in public places on nonessential errands…

That probably upset at least some readers, but stick with me for just a few more minutes!  My attitude toward sick children is, for obvious reasons, less enthusiastic than my love of being around those that are not.  I feel bad to see kids suffering from whatever cold/virus/ailment is bothering them and wish them a speedy recovery! Preferably at home.  Where they can rest, drink lots of fluids, be cared for, etc, etc, without being around other people.  🙂  Please don’t get me wrong – I appreciate the struggles of parenting and know there are circumstances that cannot be helped that make it necessary to go out with youngsters that aren’t healthy.  Altogether I have seven younger siblings of varying relation (a long story for another day, perhaps).  I have lived in a two parent household and a single parent household, so I’m familiar with doing whatever you have to for the well-being of your family.  Sometimes it means taking your child with you to pick up meds,  or get groceries and ‘sick’ supplies at the store, and sometimes it means going places when they’re getting better but might still have a slight sniffle or a cough.  Those things don’t bother me at all.  I’m an adult with multiple bottles of hand sanitizer and a decent amount of common sense.  What I’m talking about is something else entirely.  This discussion is regarding UNnecessary outings with a kiddo that is unquestionably miserable and quite possibly contagious…

I visited a local library book sale last Friday afternoon and watched as an 8-10 year old began coughing and hacking so forcefully and continually that I wondered if she left pieces of lung on the floor.  Generally speaking, I don’t pay more attention to coughing and sneezing in public places than the next person.  I try to avoid germy surfaces and take precautions since I have an impaired immune system, however, I live in a region populated with seasonal allergy sufferers so it’s normal to have one or two in a crowd that sneeze a bit or carry tissues in their pockets.  This wasn’t like that – it was bad enough that at first I wondered if she was choking on something.  Thankfully that wasn’t the case!  She went in search of her mother and began coughing again.  Her mother told her quite sternly to ‘at least cover your mouth a little so it won’t be so loud’ and then held her daughter’s flushed, feverish face against her chest in what appeared to be an effort to stifle the sound.   As soon as she finished coughing she was pushed away and told to ‘go back over there’.  ??  You know – I’m not even going to comment on that part because it just makes me sound even more judgemental and that’s not what I hoped to convey…  Anyway!  The same girl then leaned over one of the tables lifelessly gazing at a book and waiting for her mom to get finished so they could leave.  I felt a pang of sympathy for her apparent misery but, at the same time, promptly crossed the aisle and headed 6-7 rows away.  The book sale took place in a large banquet room at a convention center so it wasn’t difficult to put quite a bit of space between us.  Nevertheless, I told hubby about what was going on and it wasn’t long before we bagged our books and left.

We didn’t go anywhere else that evening and hung out around the house the next day, but the damage was already done.  It is quite possible that what’s going on with me has been brewing in my system for longer than a few days, but since my immune system is so wonky it’s not unusual for me to show symptoms of an illness quicker than most.   So while I’m not trying to blame anyone, it is also possible that this illness is the result of picking up germs at the book sale.  Either way, Sunday morning found me struggling to swallow without wincing and yesterday I made the trip to the doctor’s office bright and early.  My doc, concerned after an examination and discussion of my symptoms, sent me home with instructions to take two full rounds of antibiotics and restrestrest.  Yikes!  He never hands out antibiotics that way!  I was adamantly advised to return if I didn’t see a fair amount of improvement after 3-4 days of meds.  Now on day two and it is the worst it has been.  Today I sound exactly like that poor girl did and feel as bad as she looked… I may be wrong, but I’m afraid I haven’t seen the last of the doc’s office this week.  Whether I got it from her or not, I kept thinking about that little girl and hoping she was also able to get some meds and that we will both feel healthier soon.

As I wrote earlier – please don’t misunderstand or think I’m a horrible person!  Parents have to do what is best for their kids and I get that!  I also love books and love seeing the written word spark a child’s interest and imagination so I’m always thrilled to see an adult encourage and nurture a child’s love of books!   I am not currently a parent and, although I have opinions about it, would never dream of telling someone else how to parent their child… When and if the day comes that I have a family of my own, I’m sure I’ll make parenting mistakes with the best of them.  I’d even go so far as to say I’ve been thoughtless at times and selfishly concerned with what I need to do without considering how it might impact someone else.  Some things, however, are just common courtesy.  I’m not calling anyone a ‘bad’ parent, I’m just asking that you please be considerate of your child’s health and the health of others around you.  If you are aware your child is sick, as this girl so obviously was, please postpone any non-essential errands, or try to find someone – friend, neighbor, family – to either keep your child or go for you.  Please don’t bring them to a book sale and set up shop in your preferred section while they suffer needlessly, anxious to go home.  Not only will it help prevent spreading their illness, it will probably help them get well that much faster so you can get back to everyday activities!

….

This is much wordier than I intended and seems a bit pedantic.  Oops!  Apparently I go on and on when I have nothing else to do but lay here propped up and miserable.  I promise that’s not a direct reflection of my attitude – more a reflection of my current state of physical discomfort!  :)

Enough of that!  Now that I’ve ranted a bit and realized my cough medicine isn’t going to #1- provide much, if any, relief or, #2- knock me out so I can sleep through some of this yuck, I’d like to know who wants to keep me company… ?  Anyone?  It probably doesn’t sound like an attractive suggestion, huh?  I’m honestly not grumpy – just breathing impaired.  : )  And speaking of cough syrup – why do pharmacists assume that adults don’t want or need it flavored?  This is, by far, the nastiest, foulest cough medicine concoction I’ve ever tasted!  It seems to be breaking things up the slightest bit so I’ll keep taking it, but YUCK!   lol

 

brown cough syrup bottle
Tastes disgusting and is practically useless...

Hope everyone else is feeling good and healthy this week!   I promise not to breathe on you and promise to have a better attitude before my next post!  🙂

Remedies from Mom

For the last day or two I haven’t felt completely healthy.  It started with a headache that was fairly insistent and quite painful…  My throat has been sore in that raspy way that burns in the back and feels like if I talk too much I might start coughing and may not stop.  Big thumbs down!

The good news is that I’m used to feeling bad and still managing, on most days, to function.  : )  The bad news – I’ve been struggling with my CFS and fibromyalgia since Christmas and had a few days that were .  There were even a couple of days that I didn’t even make it to the shower.  (You don’t have to pass that on if you don’t want to!  I’d hate for people to think I’m nasty!  lol!)  my hubby felt bad for a few days before I did so I probably DID pick up a bug from him…. And while he is actually feeling better just days later, my immune system isn’t as robust as his so it usually takes me quite a bit longer to get rid of something once I get sick.

I’ve decided that I’m going to simply refuse to get sick.  (Does that ever work?)  With that in mind, I decided to soothe my throat with a common ‘home remedy‘ that my mom used to make me when I was younger.  Of course I had to get my camera out – when don’t I?  By just looking at the first two photos would you have known what it was?  Scroll slowly if you’d like to guess because I’m going to post full photos at the end – I just feel too blah to work any harder on subterfuge or trickery.  : )

flowering green tea leaves
Any ideas?

 

glass teapot condensation close-up macro photograph
Thoughts?

 

I know it probably looks like a seaweed science experiment, but I promise it’s much simpler (and effective) than that!

 

flowering green tea leaves in glass teapot
It's flowering green tea!

 

I can remember my mom giving me hot tea with honey to soothe a sore throat.  If I feel one coming on it’s one of the first things I make and it always brings some relief.  It was a little short-lived tonight, but it DID feel good going down.  Thanks mom!

 

cup of green tea with honey
Very soothing but I think I'm going to have to make some more!

 

Hope each of you have started the new year feeling good and that you stay healthy!