Category Archives: Chronic Fatigue Syndrome / Fibromyalgia

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

Advertisements

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

Catch Up Post & Try it Out Tuesday – the Saturday Edition…

It occurred to me that with the kind of week it’s been I managed to go through the entire thing without making time for any blog posts…. As a matter of fact, I’m not sure I’ve posted anything since my last ‘Try it Out Tuesday’ post.  So sorry!  I had a couple of things I wanted to encourage you to try when I posted this week and, frankly, I don’t actually have the energy to go into much detail now.  The fibro created some painful, difficult times during the last week, but the issue today has actually been more ME/CFS fatigue related.  I told hubby earlier that days like this were hard.  When the fatigue is this bad and I have things I have to get done I feel like I have to fight for every minute and action of the day.  It’s like a tug-of-war between me and the waves of exhaustion.  *sigh*  Anyway!  You probably didn’t stop by to hear me whine!  That’s just a bit of explanation of why this is going to be pretty short and sweet.  🙂
The topic of Tuesday’s ‘try it out’ post was about a few different ideas from Pinterest, each one addressing some sort of household tip or trick.  Since I don’t have much focus now I’m going to share the most effective and helpful and save the others for a different day, so make sure you check back!

 

Pinterest users share many different types of pins related to cleaning, but one of the first ones I saw that really caught my attention was regarding laundry… specifically – towels.  Our washing machine is in our basement.  To reach it you have to go outside the house, down the stairs and into the basement.  It’s doesn’t have heat or air so if a load of laundry is left in the washer too long during hot weather it can develop a smell.  This is particularly true with towels, which already run the risk of picking up an old, mildew smell.  One of the things that really bothers me is to take a shower, feel nice and clean and then dry off with a towel that has a smell that is slightly ‘off’.  It can make me feel like I need to take another shower.  🙂

When I saw that someone had pinned a link back to a blog with laundry tips for towels I automatically added it to my household board.  The solution is a simple one and I’ve run two loads to make sure it works – I’m thrilled to report that it does!  Simply set the water temp to hot and begin filling.  Add a cup of white vinegar (the instructions I read said anywhere from 1-2 cups), let the water dilute it a little before adding the towels so that it doesn’t discolor your towels, put the towels in and let it run a normal cycle.  Don’t add any detergent – just the water and vinegar.  After it has completed run the load again with your regular laundry detergent.  I left the temp at hot, as per the directions, and just restarted the load and let it go.  That’s it!  When the second cycle is complete put your towels in the dryer and dry them as you normally would.  If you’d like to increase their absorbency don’t add any fabric softener.

The first load I ran came out great and there was no residual vinegar smell or anything.  Just to get a different opinion I got a second load together with a washcloth I found crammed under the hamper.  It had a little slight mildew smell and I made my husband smell it beforehand and then made him smell it again after.  He thought it smelled great and judged the experiment a success!  This is definitely a household tip I’ll use again.  🙂
I’ll try to come back later and link up some other sites for ya!  In the meantime – thanks for stopping by and hope you’re having a wonderful weekend!   🙂

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!

thoughts from the darkness

Do you ever feel alone?  Like no one understands you or knows you – the real you – that lives deep inside?  I’m a fairly open person – easy to read… but some days I wear a public face.  Wearing a ‘mask’ is not my default.  In fact, it’s not a normal occurrence at all.  Sometimes it just happens due to a certain set of circumstances or situation.  It could be that I need to appear calm when my mind is racing, or hiding pain when my physical body is having a bad day… being polite when I don’t feel very social.  Sometimes, I’m so very ashamed to admit, it’s a mask of kindness when I’m feeling selfish or my heart isn’t cooperating and being charitable like it should.  (Of all of them, I’m glad that mask doesn’t slip on very often.  Or easily.)

Lately, however, I’ve worn a mask because I’ve felt alone.  I try to make it seem like I’m engaged and 100% in every moment, but there are times when it’s the opposite of what’s going on inside.  Like I’m watching myself participate in life without knowing where I belong.  Perhaps it’s because I’m still unemployed and wondering how I’m supposed to contribute to our household without a job.  Maybe it’s because there are goals my husband wants to reach – buying a house – and I feel I disappoint him because my lay-off is such a setback to realizing that dream.  Wanting to do something with my creative side and facing insecurities that tell me it won’t happen because I lack talent or skills… feeling guilty when I can’t physically do things that once were easy for me… It could be something as simple as being at home alone too much.  Whatever the reason, there are days that I feel I could stand in the middle of a busy sidewalk and scream at the top of my lungs without anyone noticing.  That my words bounce off everyone’s ears and my voice has become lost in a dark wilderness.  Or worse – I have no voice at all.

Once I was afraid people wouldn’t like me if they knew what I was really like on the inside… some days I feel like that’s impossible because no one sees me at all – good or bad.  Am I the only one?  Have you ever felt like no one understands or sees you?  That you’re trying to communicate from a void?  Sending smoke signals up in the middle of a hurricane?  Finding yourself lost in static darkness is a lonely thing.  I pray that light will soon come pouring back in… for us all.

passing storm cloud photo sun rays photograph sunlight after rain
Sunshine returns after the storm...
sunlight through clouds photography god rays gray clouds after storm
Rays of sunlight filter through the clouds after the rain~

I wish you sunshine after every storm~
heather

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!  : )