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!  : )

Advertisements

Week of ‘That Was a First’ Moments

Wow!  There was a lot going on this week and quite a few firsts!  Very exciting and kinda taxing for those of us that are easily exhausted.  : )

Probably the most exciting aspect of my week was the fact that my husband and I got to spend Valentine’s Day together AND go out to dinner to celebrate!  That may not seem like much, but since hubby is a chef that translates into his work schedule being packed on just about any major holiday… For all the years that I’ve known him we have only been able to spend time together on February 14th two other times.  Once was last year when I had the flu and pneumonia – that was a blast! – and the other time I think I had an ear infection.  Sooooo – it was a big deal and a wonderful blessing to see him on the 14th!  For extra wow we upped the ‘special’ factor exponentially by not only spending sweetheart day together but by enjoying our first Valentine date…

blue heart conversation heart candy true love

Our date brings me to the second ‘first’ of the week!  We went to a wonderful local chef-owned and operated restaurant that we have wanted to try for quite some time (so going there was also a first), and we weren’t disappointed… RouxBarb was a fantastic setting for our special night and the food was amazing!  The chef brought us a little treat and talked ‘kitchen’ with my husband while we were waiting for our food, and it wasn’t anything as simple as a slice of bread or other filler.  He brought us a seared slice of foie gras on a sweet potato ‘funnel cake’.  Oh my!  If there was something more to the plate I missed it.  (Undoubtedly there was and my husband will correct me in the future if he should ever read this.)  Although I had heard many awe-filled and loving references to foie gras, I usually (silently) assumed that I wouldn’t enjoy it nearly as much as the next person.  My palate isn’t the most refined, but I do enjoy being fairly adventurous when it comes to food and have spent many unique ‘tasting’ experiences with my husband.  That being said, I’ve never been a fan of liver.  I’ve had pâté that was excellent and been interested in trying other dishes but never imagined I would love it…  I LOVED it!  The dish was perfectly executed and it was a rich, creamy, wonderful delight!  So good, in fact, that after I ate the last tidbit hubby left me, I went back and scraped my fork across the plate to ensure we hadn’t missed a crumb.  (I feel like I’ve confessed a shameful secret by admitting that, but it’s true!  lol)

YAY!  Three wonderful firsts and we’re still not finished!  This week also included – reaching 50 ‘likes’ on the Finding Focus Facebook page & more than 60 followers on Twitter.  Small numbers, I know, but they were exciting for me.  : )   And finally – I attempted my first Pinterest recipe!  And it featured spaghetti squash… which I had never made AND never eaten… (what is that?  3 firsts in one?)  It turned out fantastic!  I would highly recommend it for anyone trying to eat healthier or incorporate more veggies into their diet.  Check out the ‘spicy spaghetti squash’ recipe here, if you’re interested!

spicy spaghetti squash recipe
Not the best pic, but hubby was hungry so I had to be quick! : )

There were several times this week that I got to say, “That was a first!”  Considering how exhausted and hurty I’ve been recently it was certainly a nice change of pace.  Reaching these milestones was also a great way to get motivated to look for the next ‘first’.  I’ll let ya know when I find it!  : )

be mine blue heart candy conversation heart photo

Thanks for stopping by – hope your upcoming week is full of excitement and accomplishment!

Intro to Pinterest (and Confessions of a Pinner)

I have a confession to make…  I love Pinterest and have become ever-so-slightly addicted to it.  Finding pretty pictures, inspiring quotes, recipes and DIY/crafty projects is so much fun, and I’m not ashamed anymore.  My name is Heather and I’m a pinner!

pinterest image pinterest article
Pinterest image from an article from http://www.digitaltrends.com ....

The sickness can actually be traced back to my childhood.  There was always something magical about magazines and catalogs.  I loved flipping through the glossy pages and admiring the beautiful pictures and photos of places and things I had never seen.  Sometimes I would cut them out and tape them to my walls or pin them to a bulletin board.  As I became older I even requested certain store catalogs because I knew they had wonderful photo spreads and creative design elements to their ads.  On some occasions I would cut out letters and words to create ‘ransom letter’ style notes for friends and family, but the pictures were the main focus…

In case you’re unfamiliar with Pinterest, let me give you a little background and information.   As far as websites go, Pinterest is still a newbie on the block.  It went into development in 2009 and the first prototype, if I’m not mistaken, was available for a select few in 2010 and for beta use by 2011.  In August 2011 Time magazine published Pinterest in its “50 Best Websites of 2011” column.  It’s been named as one of the 10 best social networking sites and has become an invaluable tool to many creative businesses – particularly visual artists.  All of that doesn’t really tell you what it is, however, and that is the fun part!

Pinterest is a social sharing, visual bulletin board site.  You can create online “Boards” for any subject that interests you and keep track of photos, videos, etc, from various online resources (or uploaded media) and virtually ‘pin’ it to the corresponding board.  The site connects people through the ‘things’ they find interesting…  And since it’s a social site, you can “follow” people you know and see all of the items that they pin to their boards… or find new friends!  You can pin media that you find on your own or repin something that another user has added to the site.  It tracks the site that the media originated from, so it’s great exposure for photographers, bloggers, etc, if their content gets posted by a user and then reposted by lots of others.  It’s fun to see what other people find that sparks their attention and it is easy to get sucked in and lose a lot of time!  lol   🙂

Let’s say you’re a bride planning your upcoming wedding.  You scour websites for ideas about the perfect wedding gown, color combinations, bouquet styles, cake ideas – the list goes on and on.  Pinterest gives you the ability to create a pin board for all your wedding ideas – or multiple boards for each category of wedding need.  You could have an entire board devoted to bridal gowns and pin photos of gowns with necklines you like, skirt lengths that interest you, shoes that you love…. So many possibilities, and that’s just the beginning!  I have a board for destinations I want to visit, another board for craft inspiration and one with pictures of my “bucket list” items.  (I also have about 25 other boards, but we won’t go there now!  lol)  Needless to say, if you sign up with a Pinterest account leave yourself a bit of time.  It’s simple enough to set up, but when you see all of the other things being pinned it can cost you an hour or two of your day – easily!

pinterest page with boards
This is a partial screenshot of a Pinterest screen with multiple boards.

Soooooo… The truth is out.  Let my story be a cautionary tale.  If this sounds like a site that would be right up your alley – it probably would be!  Keep in mind, however, that you may be the next person confessing your addiction!  : )

 

 (If you want to look me up – my Pinterest page is here!  lol)

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.  🙂