Triggers.....What are Yours????

This post is not a pretty one and if you have a weak stomach, you may want to turn away now.  Disclosure - it's about the bathroom.  Um you know Potty Talk.  For me and a lot of others with chronic illnesses, potty troubles rule the day.  For me it is a daily struggle and something I have to always think about.  Will I be close enough to a bathroom, will I make it, how far can I ride in the car without an incident.

A little background information - I have had what they used to call a spastic colon forever!  I believe I remember hearing that diagnosis at about 17.  Later they labeled it IBS - Irritable Bowel Syndrome.  No surprise there - all of my parts seem to be irritable or spastic. Gall bladder, uterus, bladder, colon....just seems to be the normal for me.  Many people with ME/CFS as well as Fibro have bowel/stomach disorders along with their illnesses. 

 Now to what is going on now.  A few years ago I started having trouble during bowel movements (I know Potty Talk) and it increasingly got worse.  I would feel a little stomach pain and then my ears would get hot, mouth dry, ears would start ringing and as I sat helpless on the toilet I would begin to pass out.  The goal became to complete the bowl movement before passing out so that I could crawl to my bed and lie flat until the episode passed.  It takes an hour or more laying flat or with feet up for it to completely go away.  Sometimes I am successful and sometimes not.  I won't go into the mishaps that I have had and how frustrating this has become.  The name the doctors have given it is: 

Vasovagal syncope (vay-zoh-VAY-gul SING-kuh-pee)

(also called neurocardiogenic syncope) 

Now passing out is no fun in any case but my real problem is the accompanying poop issue.  If I don't get to a bathroom before I go down, I have no control of what happens.  This happened once while we were on our way home in the car and the train left the station and could not be stopped.  I tried so hard not to pass out but was all but gone and I could feel my legs start vibrating as if I was having a seizure.  Hubby had to practically drag me into the house where I had to sit on the toilet with head between the knees - my new strategy - assuming the position.  I can go weeks without an episode and then bam here we go again.  These also come with nausea, belching, tummy rumbling and pain in the middle of the stomach.  I ended up on the floor of the dentist's office yesterday - so embarrassing.  But at least no poop accident....

I am going into all of this poopy talk because I must figure out my trigger.  Just like so many things with these illnesses, there is a trigger.  Things I do know - constipation, over eating and drinking things with sugar seem to bring on an attack.  I have had lots of tests done and the only conclusion is that there is something that triggers this for me.  I am starting to think food allergies, possibly gluten sensitivity.  I have read lots about how common it is for those with Fibro to also have gluten issues.  So my conclusion until more tests are done is that I am going to put myself on a gluten free diet to see what happens.  I figure it can't hurt and all I have to loose are some of my favorite foods.  :-)  For now I just would like to be able to leave home without feeling that I need a diaper and that I must always have a caretaker. 

I would love to hear from others who may have any of these type symptoms with their ME and or Fibro or any chronic illness for that matter.  Together I believe we can figure out things that sometimes our doctor's can't.  Together we are all stronger.

What is Your Season????

For many of us with a chronic illness, seasons can make a huge difference in how we are feeling.  Some just love Spring with the color and more moderate temps and others love cold for some inexplicable reason.  For me, Fall is the season that I get the most relief from pain and allergies.  Well for most of us, Spring has sprung and love it or not it is here.

For many years I had a love hate relationship with
Spring.  While I enjoyed the color and life that showed up with flowers and weather, I felt Spring was mocking me.  Yep - there it is - how could the world be alive with color and beauty when I felt old and awful.  To top it all off, like so many I am plagued with allergies that exacerbate something awful in Spring.  They are with me all year long but Spring is the trifecta for me - runny nose, stuffy head and drippy eyes.  Ugh.  I have read many times that allergies are supposed to lesson as we grow older - something about the immune system becoming less effective so it doesn't fight the things our bodies used to rebel with as much vigor.  Sure - not for me - mine just keep getting worse.  Anyway - enough of the whining - there is a point in all of this.  Really.....

As I get older I am learning to embrace the good things that we can enjoy from each time of the year and put the bad ones on the back burner.  Now that sounds so easy but just like anything in life it has taken lots of time and practice over the years.  Don't misunderstand, next week I will very likely be complaining as I hack and sneeze but at least for today I am embracing the first day of Spring and so trying to enjoy all of the things on the love side of the list.

Now this is true with all of the things that bring on bad days and weeks in bed. I still believe in fighting for my health and I do it everyday but I have also learned that we must mine for the gold in each and every situation to make life all that it can be.  If we allow the pain and negativity to overcome us it will envelope us and we become powerless.  This past winter was difficult for me and while our weather here was mild compared to many areas in the country, it was tough for us Southerners who are not prepared for it.  I succumbed to a deeper depression than usual and confined myself to my bedroom for hibernation.  With a change in meds and an ability to see myself sinking in deeper and deeper, I have been able to grab hold of the side of the hole and begin to claw my way out.  I am not on solid ground just yet but I am feeling my feet beneath me again and as I look up to a rare bright sunny day I feel some of the pain easing away slowly - just as it came on.

For those of you who don't suffer depression as an aside to the effects of chronic illness, then none of this may make sense.  But......for those of us who live it and breathe it every day of our lives, you know these feelings well.  Get out and take a walk, make yourself connect with others, love those who love you and enjoy them.  Hug your pets and hold them close to feel another heart beat, feed yourself well and know that you are worth feeling better!  Above all learn to be kind to yourself because through that exercise you will know kindness and love for others and life will bloom again right along with Spring!

What...CAN...We Do?????

I have been hibernating for the past few months and I am gradually trying to drag myself out of my cave.  This happens several times a year, especially when it is very cold.  We have had an unusually cold crazy winter here in SC and by no means am I complaining because I know other parts of the country have it much worse.

When I lock myself away, I have a tendency to think and rethink things and sometimes that's not good for anybody.  But....that doesn't stop me.  (Smile)  Anyway, I have been thinking a lot about something that I truly don't like and I am sure many with chronic illnesses may agree.  I know we all have our own list of pet peeves and much of them are more than likely the same.  For me I just hate it when a friend or family member tells me "You can do what you want to do".......  Really??????  What the hell - IF I could do what I want to, I would dance, and shop and run and on and on and on.  What many fail to see is that if we could do as we please, we surely wouldn't choose to be at home missing out on so much of life.  We try and make the best of our new reality and it appears that this is our choice.  I think I speak for most when I say it is not!

As this poster reminds me, thoughts can take me down if I don't get them somewhat under control.  One way for me is writing so here I am, pouring out my dribble and hoping it will help others who understand it all too well.  An idea struck me as I was dwelling on this pet peeve and I thought it might be helpful to us all!  I decided to create an FAQ - one that would be useful to many of us as a whole.  When someone gets on your last nerve or just because, you can share this little ditty and hope it sinks in.  Let me know if you have suggestions for additions.  It is a living breathing statement and I know that I will think of more very quickly as soon as they rotate around again in my brain.

Frequently Asked Questions About ME/Chronic Fatigue/Fibromyalgia and Chronic Pain

• Q:  Are you really that tired?  I get tired too and I just keep going.  Why can't you?  A:  There should be another word in our vocabulary that explains or exemplifies how tired we get.  There is no true description but the best way I can explain it is to say it is like you feel after surgery or a very bad bout of the flu.....exhausted, drained, too tired to even breathe on your own.  The harder we push ourselves, the deeper hole we dig and the longer it takes to feel any relief.
•  Q:  If you just go to bed earlier and get a little more sleep, you will be fine.  A:  This is a truly frustrating idea for us to hear.  No matter how much rest we get, or how much sleep, it really does not help.  It can keep us functioning but it will not make the fatigue go away and it will not allow us to sleep less.  It just doesn't work that way.
• Q:  Take a shower - always makes me feel better.  Why don't you try that?  A:  If only I had a dime for every time I have heard that suggestion.  Unfortunately hot showers and or baths can be relaxing and help with pain but usually increase fatigue and take a good while to recover from.
• Q:   You look fine and don't look disabled.  I think you are fine.  A:  I read a little sign once that answered this perfectly ~ it said "you don't look stupid either".  As many have said these are, for the most part, invisible illnesses.  Some of us do have rashes and in time look haggard from lack of sleep but there is not much in the way of our appearance that gives it away.  With time my ability to walk has changed and many of us suffer from balance issues as well.
• Q:  Oh I think you just have _______________.  My sister, friend, brother, have it and they are fine.  A:  Please understand that most of us have been through so very many tests and doctors and meds, and every other possible cause of these problems has been sought out and YES I have seen a psychiatrist too it's not all in my head.  Really we don't need your diagnosis as well.
•  Q:  I heard there is a medication you can take to make it go away.  A:  Fibro and ME/Chronic Fatigue are very complex illnesses and there is no one prescription that will cure or take away all of the symptoms.  There are medications that can alleviate some of the symptoms but nothing can make it all go away. 
• Q:  I am sure you could find a job sitting down.  A:  Unfortunately sitting does not allieviate the pain and many cases it makes things much worse.  Staying in one position and one of the worst things you can do and will definitely cause all sorts of issues.
• Q:  I am sure you could work from home.  A:  Many of us have worked from home, remotely and any other way possible.  I did it for over 14 years after I was diagnosed until I could not do it any longer.  The complexities of these illness make it so difficult to work in so many ways.

Well, as most of you know, this is just a sample and the tip of the iceberg.  I have mentioned some of the most personal for me but I would love to know what others are hearing in their own lives.  Information is power and if we all work together to try and make ourselves understood, maybe one day it will make a difference for those who also walk this path.  Email me at lslee@sc.rr.com with any ideas to add to the list.

Another resource I wanted to mention in this l-o-n-g post is the BYDLS web page and the spoon theory.  My daughter-in-law told me about this site and the theory is a very simple way to explain how we live out our days.   That link is below - share it with your loved ones if you haven't already.  It is truly awesome!

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/