Tuesday, May 1, 2012


I got a note from Allie... She had left it over a week ago, but I wasn't able to read it until last night.  Allie has fibromyalgia and chronic fatigue.... I know these illnesses.  My daughter has these illnesses.  As I've noted, the MS consists of the same symptoms along with others.  Sweet Allie's comments spoke of the frustration of others because she can scrap but it's so difficult to help with chores.  I am all too familiar with this strange phenomenon.  No, it's not picking and choosing what we are able to do.  It's so much more complicated than that.

Cooking and cleaning are chores because they are hard to do.  It's that simple.  Yes, there are some people who love one or the other or both.  Makes them no less hard to do.  Chores consists of doing a specific thing usually in a specific place at a specific time.  For anyone with physical limitations or fatigue, any of those things is quite nearly an impossibility in and of itself.   One of the main reasons that I cannot work is that I can not do anything at a specific time or in a specific place.  I never know when I will be able to sit or stand; nor for how long I'll be able to do either.  Let's face it, you can't be in the middle of frying chicken and just go rest.  That's not going to happen.  I've even ruined a few grilled cheese because of that very reason.    

In the past I have alluded to some of the physical limitations I experience; but now I'm going to explain the emotional baggage I have (and apparently these are fairly commonly felt by most people who deal with chronic illness): 
First there is the guilt.  Oh so much guilt.  Guilt that we can't work and make our own living anymore.  Guilt that we can't help out around the house.  Guilt that people worry about us.  Guilt that we can't do more taking care of other people or do things that we feel we should. 
Second there is frustration.  Oh so so much frustration.  Frustration that we can't work.  Frustration that we can't earn our own money.  Frustration that we can't help out around the house.  Frustration that we can't do what we once could or what other people our age do.  Frustration that no one really understands what we deal with.  Frustration that we can't change anything. 
Third there is anger.  I want to say here that the one expression that I hate above and beyond all others is "Suck it up".  In a time when 'suck it up' is the general consensus, it is horrible to feel that to express how you feel is considered "whining".    I'll just say it... our lives suck!!!  We have all these physical issues and emotional baggage - and on top of all that, we will never get to do those things that our heart desires.  I will never again wear a pair of 4" heels with my suit going off to work.  I never get to drink a beer with my pizza because of my meds.  I can't take my grandchildren to the beach because I can't go out in heat.  Every morning I wake up in pain.  And, because I said it out loud, I'm considered as whining.  Now that pisses me off!
Finally there is depression.  The depression stems from the guilt, frustration and anger as well as the fact that we often feel utterly useless.  No one should ever feel useless.  No one should ever feel that they are not capable of taking care of themselves or anyone else.  No one should ever feel that they are not good for anything.  No one should ever feel that they are not worthy.  Uselessness can become devastating.

Now back to it... How can I scrapbook if I can't work or do household chores... especially after the last few blog posts about how "hard" it is.  Well, I don't know about everyone, but here's my top ten reasons (in no specific order) that I can continue to scrapbook even though I feel like shit:
  • I pick and choose where I scrap.  Sometimes it's at the table, sometimes at the counter, sometimes on the floor, sometimes in the middle of my bed.  The portability of my hobby is essential; as only God knows in what physical position I will be able to function from day to day or even minute to minute.
  • I pick when I scrap.  I don't have to do it on anyone else's schedule, but just whenever I feel like it and only as long as I feel like it.  Best of all, unlike fried chicken or grilled cheese, I can walk away and come back to it later.
  • I get a serious sense of accomplishment.  I have turned into an "instant gratification" kind of girl!  Okay, so maybe it's not entirely instant, but layouts come together fairly quickly - even if it takes a couple of hours, that's still quicker than most of my hobbies of the past.  Sometimes I keep going though in excruciating discomfort just to get it done.  Then, you know what I do?  I hang my layouts where I can look at them.  Seriously.  Until I create something to take its place.  Because I need to know that I have accomplished something, anything.  I need that reminder (And then I rest for hours or days).
  • It takes my mind off of everything else.  And trust me, that is welcome relief.  Those who don't deal with a chronic illness have no idea how often it is on your mind.  Not just the feeling sorry for yourself, but the pain and clock-watching until your next meds.  (Or wondering where your prized possessions are and pissed off you can't find them!).  
  • I have to get those memories in the books because no one else will do it.  Yep, that's right, I'm important - truly!  And even though I don't believe I am going to die in the next 20 years from this disease - because I live with it, it's always in the back of my mind that dying is all the closer.  It makes no sense, I know.  But mortality is all the more vivid just because I feel so terrible most of the time. 
  • I need to exercise my brain.  I can't read anymore - I have to read the same passages over and over for comprehension and sometimes I just fall asleep at the turn of a page.  But watching TV or just surfing the web all the time turns my brain to mush.  Especially because between the disease and the meds, my brain doesn't work just right anymore - so I must think constructively so that I don't become as dumb as a rock.
  • I need my creative outlet.  I need to exercise my heart.  I still have something beautiful inside me and this is my way of letting it out.  Just because I'm a whiny, mindless bitch doesn't mean that I am soul-less.  And there it is on paper.  My favorite pictures of my favorite people and places set in my favorite artistry. 
  • It steers away my depression.  (Okay, I admit it - this can currently be a two-edged sword.  I can't afford new scrap toys so that's a little more depressing.)  I think that fussing with papers and embellishments, putting everything just so, is a little perfectionistic in its way - making up for the chaos and lack of control in the rest of my life.  At any rate, spending time selecting beautiful papers and embellishments, favorite pictures and telling the stories really does ease the frustration and especially the anger.  I am never happier than when I am scrapbooking.  I am never more at peace than when I have just completed a layout. 
  • It's fun.  Because life especially sucks most days, it is more important than ever for me to find some fun in life.  And to me, this is it.  I can't go to the beach anymore.  I can't shoot pool because of the optical neuropathy.  I can't do oh so many things anymore.  Mainly I don't even feel like doing those things anymore and, even if I had my old income, wouldn't really be able to afford it with doctors and prescriptions, etc. (and now I know how important it is to save up some money for those emergencies).  So this is it.  I wrote yesterday about how excited I got about finding my fave adhesive.  It's a good life when something like adhesive can make you dance a little jig. 
  • I love it.  I've been sewing & crafting all my life, and never have I ever loved anything or been as excited about anything like scrapbooking.  And the only way I know how to explain that is this: I can create things in many ways.  Beautiful things.  Unique things.  But in no other craft have I ever had the chance to create something beautiful and unique that included a photo of something or someone I truly love.  It's the photo that completes the project; and it's the photo (regardless of what or who) and the memory created therein, that makes the project truly beautiful.  Often I scrap to preserve memories.  But sometimes, ever more frequently, I scrap just because it's the photos that I love - and I use those photos on more than one layout -because its all about the wonderful creation. 
So that's my story and I'm sticking to it. 

Creating Keepsakes magazine has a recurring article entitled, "Creativity Heals".  I believe this with all my heart.  Furthermore, I have taken up the actual project this article refers to.  Create a page, a mini-book or an entire album regarding how you feel, whatever it may be.  You can use photos of yourself, your family, or from the web - whatever you want to use, however you want to do it.  I suggest anyone with a chronic illness or depression to try it.  No one else ever has to read it if you don't want.  But it's so very emotionally and mentally helpful to let how you feel - physically, emotionally, mentally - out loud, on paper, however you want.  Be creative!!!

Love to you all.


"It's important to do the work that leads to our renewal, clarity and inspiration - and then remember to taste it, experience it and let it flow."  - Linda Saccoccio


  1. Well said and very well written. Maybe you should think about submitting this to Creating Keepsakes???

    1. Thank you, sweet Cynthia. I would surely have to do some editting before submitting my little ditty, huh!?!