Tag Archives: CFS

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.

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

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.

🙂

 

 

Fatigue on Easter Eve

I’ve tried to stop by and post several times this week, but it’s been such a difficult week.  Again.  Yuck…  Since that was the case, I kept putting off writing anything because I didn’t want to whine and complain.  However, part of being transparent and open is sharing the good AND the bad.  So here I am.  🙂

This won’t be a long post – I really need to get to bed and at least try to get some sleep – but I wanted to stop by and chat about why this week was less than stellar in the hopes that it might help someone else… Even though I have went to the doctor yesterday I don’t have a definite diagnosis, but I have a pretty good idea of what’s going on.  Brief history – a couple (two? three?) of weeks ago I had to go to the doctor and he diagnosed me with walking pneumonia.  He put me on two full rounds of antibiotics, which I finished last week, that seemed to clear things up okay… I still have slight chest discomfort and an occasional cough, but it’s a real improvement from weeks ago.  The problem is that the antibiotics seem to have completely wiped out all of the good bacteria in my body.  The result of which has been an extremely sick week in a different sense.  (*sigh*)  Now I’ve had to have samples sent to the lab and blood tests run… Speaking of which – has anyone else with CFS/FMS noticed an increased irritation to medical tape since their diagnosis?  I can’t remember it ever being an issue, but in the last year or so any time I have blood drawn and they tape cotton my arm I’ve ended up with raw, irritated skin even if the tape is only there for 30 minutes or so.  ?  It’s really strange!

Okay.  That was a slight detour from my original thought process!  🙂  My point was to stop by and say – if you already have issues with your immune system and get put on lots of antibiotics, make sure you add probiotics to your diet to replace the good bacteria that is getting wiped out!  I know everything is going to be okay, but at one point during the week I wasn’t confident I was going to stay hydrated enough and had a real fear that a hospital visit was lurking in my future.  I’ve been dehydrated and hospitalized for it before, so trust me when I say that it’s one of the least fun experiences I can remember going through!  I’m so glad it appears that this isn’t a scenario that will be repeated any time soon…  🙂

Hopefully I’ll be back tomorrow or Monday with an upbeat post when I’m not so worn out.  It’s sad to think that I’m so fatigued from a week of doing absolutely nothing, but at least my body has been able to use the rest to begin to mend.  Maybe things will just continue to improve and next week will just get better and better!  A good week?  A healthy week??  Yep – I think I could really enjoy that…   🙂

dark purple iris with raindrops photograph
Beautiful irises are blooming here... hope you find something of beauty around you today!

Happy Easter!  (and Happy Passover to all of my Jewish friends & family, as well…)  🙂

Thanks for reading~
heather

Learning Fibro As I Go

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…  🙂

love you, buddy!

difficult to understand…

Monday is not usually a day that finds me with a lot of things on my mind… Just dealing with the start of the week is ordinarily more than enough to keep me busy.  Today has been different from most.  I’ve been puzzling through a few things.  Some of the weird things in my life that are confusing. For example – although it seems counterintuitive, insomnia can actually be a symptom in Chronic Fatigue Syndrome.  Does that seem like a cruel and ironic joke to anyone but me?  That sort of defies comprehension.  Debilitating exhaustion is already one of the identifying problems with the condition… it would seem that sleep would be easy.  Not the case!  For some patients, anyway.  (I am pointing at myself while typing this.)  It’s not something I deal with every day, but I go through phases dealing with horrible insomnia.  It’s cruel and unusual punishment but can occur with anyone dealing with CFS or Fibromyalgia.  (Yay!  I get it from both sides!)

Sorry!  I sound angry and I’m not – honestly!  (most of the time, anyway… lol)  : )

I didn’t intend to go on and on like that.  One more mini-rant and I’ll be done, okay?  Okay!  : )

Another thing I’m having difficulty with – last Friday I was hauling stuff up and down the stairs to the attic and it made me sore and wasn’t easy, but I was physically capable of doing it.  Yesterday I made cupcakes and it took me almost 20 minutes to fill a twelve cup muffin pan.  Why?  Because I couldn’t hold the KitchenAid mixer bowl with one hand – my arm just wasn’t strong enough.  I had to hold the bowl against my stomach and lean against the counter.  It just doesn’t make sense how things could change so drastically over the course of two days… The good news – I was able to finish not just one pan of cupcakes, but two!  Orange creamsicle cupcakes – baked, frosted, the whole shebang… And then, of course, I was also able to eat them.  lol!

orange cream pop creamsicle cupcakes

 

On a lighter note – I have a weird movie quirk that I can’t understand.  While working today I was trying to find something on the TV to listen to in the background.  Moulin Rouge! was playing on one of the stations and was about halfway through.  I love the movie and the music, so I figured it would be a great choice.  Only problem – I can’t watch it, even in periphery, without crying at the end.  Every. Single. Time.  So, why do I watch it??  Singing a medley of love songs in a golden elephant boudoir with Ewan McGregor IS on my bucket list, but that would make me happy… lol!  The end of the movie – not so much.  So why I torture myself by watching it when it just makes good sense to avoid it altogether?  My heart would remain unmoved, my tears unshed and if I need a fix I can just sing the songs in the shower.  Wouldn’t that be a great solution?  But no!  If it’s on and I watch any part of the last 30 minutes or so, 8-9 times out of 10 I will end up teary-eyed.  Most people who know me are aware of my extra tender and sensitive heart and would not be very surprised by this admission.  Few are aware, however, that I consider a handful of movies worth the tears no matter how many times I’ve seen them (and cried).  Apparently Moulin Rouge! is on the list.  lol!  (The Fall  also comes to mind as another movie in that category.)

moulin rouge movie
Love this movie!

 

So there you have it!  A few of the things I’ve been trying to find peace with this afternoon.  : )  Nothing shocking or spectacular I know, but more excitement than I see on most normal Monday afternoons…  Hope your Monday has been interesting and exciting in some way, and that you find peace with the puzzling questions in your life!  : )

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.  🙂

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!

 

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.