My Jar of Spoons

When we write our blogs, we write for ourselves and for others.  Hope that someone who would benefit would find our blog.  Learn something from it, whether a new recipe, a new product or information. When I wrote about my fibro and how it affects me, I really hoped someone would read it that needed to know they were not alone.  That is what happened.

While reading the comments on the post, I felt like I did help.  I also learned of a site that I want to share with all of you. It is  butyoudontlooksick.com.  This site is for those of us, and our loved ones, that have chronic illnesses and invisible disabilities to realize we are not alone.  WE ARE NOT ALONE. The founder of the website, Christine Miserandino, has lupus. She has dealt with lupus and the effects, since she was a teenager.

Christine has a way of telling people who do not have lupus what it is like to live with it every day.  How she has to plan everything she is to do or needs to get done in one single day.  To explain it, she has what is called 'The Spoon Theory'.  The theory uses a spoon for each step that will be taken during the day: getting up in the morning, showering, getting dressed, etc.  The trick is you only have 12 spoons for a whole day.  You don't get more if you run out.  If you borrow a 'spoon' from tomorrow, you start with less the next day.  I do believe this is the best way I have ever heard of explaining what we go through in daily life.  If we could tell all the lucky people, that don't live like this day-to-day, how it feels, maybe they would understand more.


When you visit her site, click on 'The Spoon Theory'.  I suggest you do it with kleenex close at hand.  I tend to 'wear my heart on my sleeve', but I doubt you will read this dry eyed.

My wish for today is for all of 'us' to explain to one person what it is like to live in our shoes.  Why we hope no one ever need live like we do.  I know that so many diseases have no cure.  Most of the time, the meds given to us have worse side-effects than the disease.  I don't expect a cure, but making others understand will make it better, for us, to take that disease, no matter what it is, by the horns, shake it around and let it know who the boss is.

Remember that we do matter, we are not invisible, we are valuable, and we are not alone.

Have a restful afternoon.

Hugs...

Memorial Day

In my life I have been lucky to live in Europe for 10 years.  While there, I have seen things that most of us have only heard about or read in a school book.  I have seen history in the making, as I lived in Berlin for the fall of the Iron Curtain.  I have traveled to many cities while there, but the one that I remember the most is Brussels.  

While in Brussels, I went to many monuments and museums.  Walking the normal city streets is a history lesson itself.  The most memorable of the monuments were the cemeteries.  I never knew so many of our men had died.  More than I could even imagine.  When you are given numbers of the dead in books, on the news, etc.,sometimes we say ,Wow, that's so many.  Then when you see it in front of you, it is overwhelming.  I have been to many cemeteries, both military and civilian.  I have never seen so many crosses.

In Belgium, and the surrounding borders, there are many monuments and cemeteries that are American.  The Belgium people tend the graves of a chosen soldier.  This is a lifetime commitment of their family.  The graves are well tended.  School children go to the cemeteries as classes.  They learn about the history of the wars.  It is truly overwhelming to see how tender and loving they are with the dead, of whom they do not know.

When I went to the memorials, it was as though I was at peace.  That is the only way I can phrase it.  It is peaceful there, among all of our men who took up the fight for us.  Many people would talk to us, asking where we were from, if we had any loved one there.  Many of the Belgium people have found families of the graves they tend.  They would share with us about the soldier.  It was a wonderful experience.

I have seen Flanders.  The poppies.  I have walked in the trenches that still exist.  The same trenches that our men sought refuge in. Died in.

While re-reading some of the history about Flanders Field, I have found videos of some of the memorials in Belgium.  I couldn't figure out how to link it here, so here is the website: abmc.gov/cemeteris/cemetaries/ff.php


Many of the men in my family were in the military.  I was lucky, as I never lost any of them in war.  My father and his brothers were in Korea.  My ex-husband was in the 'cold war', behind the Iron Curtain.  I have lost friends in the more recent military battles.  I hope to never lose any more.

I will end with the poem that most of us think about today, Flanders Field.

Remember them today and every day.

Hugs...

The Silent Monster

Well, it has been a long time since my last post.  I do apologize.  My life has been taken over by a monster that can creep up on you at any time and, once in its control, you must just wait for it to release you.  This silent monster is fibromyalgia.

Those of us who have fibromyalgia  look like ordinary people. No scars or identifying marks.  We look NORMAL, but we are not.  A simple act of dusting or hovering, watering the yard, shopping for groceries, can leave us so tired we need to sleep for days.  Going to work for 8-9 hours daily is something that we may not be able to do.  Fibro can change your life.  If has for me.

How do you know if you have fibro?  Most doctors will ask you questions concerning your daily routine, if you work, how long, etc.  They will ask questions about your eating habits and sleeping habits.  They will do a  pressure point test on 18 spots on your body.  These 18 points will probably be very sensitive to touch.

For many, medicine and diet and exercise will help.  Avoiding stress will help.  I do not take the normal meds of fibro patients, as I have bad reactions.  I take a med that had a totally different use in the 60's.  This is taken at night, as it helps me sleep and keeps the pain tolerable.

Not every one with fibro will have the same symptoms.  I can feel when a 'flare' is going to happen.  I feel like I am on fire, actual fire.  The way I described it to my doctor was dousing myself in petrol and lighting a match.  After this, I will have a bad 'flare' within 12 hours.  A 'flare' is also different for everyone.  I get the 'burning', cannot get enough sleep, am restless and walk around in a fog (referred to as 'fibro fog').

In the last month or so, I have had several of these 'flares'.  One was so bad that someone had to stay with me, as I almost could not walk.  I did not have the strength.

Stress, for me, is normally what sets it off.  The last several months have been hard on me.  Things have happened that I never thought would.  I let this eat me up inside, and that's what set my 'flares' off.  Trying to be  'stress-free' is very hard.

Why do people get fibromyalgia?  There is no answer for that.  Doctors have thought/said it's inherited, others have said a reaction to another disease.  I have no answer either.  I know that no one on either side of my biological family has had this diagnosed.  I do know that my 20 year-old daughter has just found out she has this.  She is not on meds for it, as she is having a baby in late July.  I suspect my 12 year old daughter also has it.

For me, fibro started when my arthritis  was getting bad.  I also was diagnosed with lupus around the same time.  Were these factors?  No one will probably ever know.

The month of May was labeled National Fibromyalgia/Chronic Fatigue Syndrome Month.  If you have or know someone who has this, were purple.  I don't have a lot of purple clothes, but I have kept my nails polished with purple!  I have seen t-shirts with slogans on them, wrist bands, bumper stickers, etc.

I know it is at the end of May, but I think we shouldn't stop remembering people that have this.  We really look just like everyone else.  Most of us put on a 'happy face' and continue with everyday life.  I know I do, far too often.

So, if you know anyone with this disease, wear purple for them.  If you have it yourself, know that you aren't alone.  There are many of us that understand how you feel and how your life has changed.

Have a wonderful day,

Hugs.....