Where Do You Land....

I have been thinking a lot lately about why I struggle so with organization and getting anything accomplished.  There are the obvious reasons that come with any chronic illness but it seems to be more than that.  When I worked from an office at home for over 14 years, I had a spot to gather my thoughts, look at to-do lists and just regroup.  It was my desk in our home office.  After I was forced to give up my work that was the absolute last place I wanted to be.  I moved my things out of that space and gave it to my hubby who needed a home office.  At about that time our 3rd son moved out on his own and we moved our youngest to his room and that left a small bedroom open for my long wished for creative sewing/craft room.  This would be my space!!  Yay!  A place to land and be creative as well as keep up with the day to day of our lives.  Well here I am 6 years later and I still haven't really embraced the new space.  We all need a landing - our own unique little spot to keep a calendar, notes, lists, etc. to keep things on track.

This image is one I pulled from Google and it represents what a landing for me would look like if I could make it happen.  Could it be that when confronted with the changes in our lives that a chronic illness bring, we have trouble finding a place of comfort???  It doesn't have to be this large or elaborate, a corner with a comfy chair and good lighting would do.  For me I feel like a vagabond, I drag my things from space to space in this house.....lately mostly in the bed but it never really feels like "my" space.  I am struggling with this and hoping to find a new landing in the new year.  I feel it is integral to peace of mind and to getting anything done that I truly want to accomplish.

Maybe this is jut me - everyone might not feel compelled to seek out this kind of refuge but I do believe that most of us who live our lives primarily at home, need to feel comfort there.  I do love our home and I am always so relieved to get back here when I leave......I just want to find that one spot again that gives me that ahhhhhhh feeling.  That ease of knowing this is where I belong.  This is where I can create, read, meditate, whatever it is that makes me keep going from day to day.  I will continue to strive for this for I know it works for me.....  I encourage everyone who struggles with a chronic illness and is home bound to make this a priority..just for you!

Let's Talk......

I am a big talker - to myself that is.  I know most people do it and if you're like me and spend time alone it gets to be quite the ongoing dialog.  But....how does that talk go??  Most every body is familiar with this little graphic from The Help and I love it so.  It reminds us how very important our inner dialog is.  The older I get, the more I realize that it is necessary to replace all of the negative garbage that goes around in my head with positive reaffirming thoughts. 

Would you say that to a friend?  Would you attack someone you love in the same way you would yourself??  One of the biggest lessons I have learned on this chronic illness journey is to at least try and be kind to yourself.   Daily affirmations are a good way to do this and being patient when you make mistakes or can't do things that you used to do.  I have found out that if I get angry and frustrated with myself then the situation only gets worse.  Laughter is the best medicine in this case and so much of the time it breaks the tension and makes dealing with this monster a little easier.

As part of my illness, I have something called Duputren's Contracture and this has caused my hands to begin to turn inward and it makes it difficult to grasp and pick things up.  The orthopedist  tells me this will more than likely happen to my feet as well.  This is not life threatening and is just another agitation among many.  Some days I get so angry and frustrated about breaking things and dropping whatever is in my hands.  But....I can still type and I crochet, mostly because I love it, and because it is good therapy for my hands.  There are lots of other issues with both hands like most of us have and I am determined to keep using them and keep them working.  Good self conversation works here too and being thankful that I have hands that can still do many things.

Just remember to Love yourself so that you can truly Love others.....

How Big is Your Backpack???

For a while now I have been noticing a statement floating around on social media that goes something like this:  "Be Kind to Everyone Because Everyone is Fighting Some Kind of Battle".  I tend to brush this off and smugly think to myself - yeah I just bet.    Ugh - I don't like that side of myself and I have to work hard to fight it.  I know it might be human nature, to some some extent, to think and believe that we are the only ones - no one else could be going through what I am or as much as I am.

Unfortunately there are many things to quickly snap us out of that frame of thought.  Each and every day I am reminded how very difficult and gut wrenching the problems of others I know are.  I started thinking about something that my Hubby always says.  He tells me quite frequently that we don't know what others are carrying in their backpack - their hypothetical metaphorical backpack that is. This is the place where all of your problems, worries, fears - real or imagined live.  From there my thinking went to - what if we could see every body's backpack - immediately see what others are carrying around in their lives.  We might complain less and feel more empathy and focus less on the weight of our own.  Of course there are always going to be those who have a very light pack and don't even realize it.  We can't change that so we just have to change how we see them and or deal with them.

Even further into that thinking, I thought about how each individual's bricks are weighted by their own experiences.  For example someone I know might have a brick labeled divorce and I might think it's not a horrific thing because mine was years ago and all of the pain has faded.  But theirs may be fresh and new and still causing gut wrenching pain.  Therefore not only are we carrying around these bricks but they morph and change in weight and pain over time.   Some days the bag is lighter for reasons only we may know.  Other days we can barely get out of bed and pick up the bag - it is just too heavy and the pain of the weight far too much.

All of these metaphors apply to a chronic illness as well.  It is definitely a weighty brick in the bags of those of us who carry it and the size, shape and weight of that brick changes hourly, daily, weekly and for the most part it is ever changing.  For most of us, the backpack will always be invisible and we will have to rely on the kindness of others to understand what we are carrying.  We will also need to try and envision the backpacks of others we come into contact with, friends, family, strangers and understand that while we may never know what they carry, we can try to understand and empathize with the fact that we all - every single one of us carries something.  Only we know the true weight.

Milestones.......Not Always What They are Cracked Up To Be...

From the minute we are born we are hitting milestones in our lives.  Smiling, talking, walking, growing and on and on.  This past week while reading a daily devotion from Guidepost I was forced to look a little harder at milestones in life and what they really represent.  The author of this particular writing was a young father and he was lamenting the progression of his young children from crib to bed.  Ahhh - I so remember those days - bitter sweet because as they grow and become more independent, they also are growing up and life is moving on.  While that is what we all wish for our children, it is not an easy process.

What this young Dad realized in this moment was startling to me - he said that each milestone......each growth and development is sort of like a death in a way.  Well I extrapolated this even further - for all of us as we touch these milestones in life, we are moving closer to our own mortality.  Yep - there it is - I said it. Each tick mark moves us closer to the line - whatever it may be for us.

As I move into the beginning of the 4th quarter of my life, I am starting to see that all of the rush to get to  these milestones is foolish.  We spend so much of our time worrying about this one or that but not so much enjoying the experience and what lies in between.  Since I have been forced to slow my life down and limit what I can actually do, I am learning that life is really in the small things and those big milestones and events - while exciting and wonderful - are not the sum of all things.  If I could go back I would linger over each one for my children and savor the deliciousness of each of their steps rather than pushing them along the path to grow up.

It is the very same with a chronic illness - we must make the most we can out of each day - good, bad or indifferent because hoping and waiting for the day we are better or reach the milestone of a cure may and most likely will never come.  This is not negativity speaking but acceptance and the attempt to learn to make the very most of what I do have rather than wishing for what I don't or may never.  I see suffering around me every day and I fully realize it is all part of life but we have to try to learn from everything and know that all experiences give us something whether it be learning, patience, appreciation, etc. we will get something from everything......every little thing.

Riley Adjacent........Really?????

My Hubby and I were talking the other day about the fact that I am no longer able to work and how it does make my life easier.  I joked and told him that I am not exactly living the "Life of Riley" over here.  He bravely made the statement that is was close to it - you know sort of Riley adjacent.....  What????  I guess to most, myself former self included, it does seem that I have it pretty good.  Now I am surely not whining and complaining because I know it could be so very much worse.  But having said that, I would trade my chronic health issues in a heartbeat, to be healthy and independent, able to come and go and have freedoms that I long ago gave up.  I used to dream of staying at home and cooking and doing homey types of stuff.  It is very different when you have no choice.  It truly changes the dynamic.

 For me at least, having a chronic illness is like playing the wheel of fortune - but instead of dollar amounts the wheel has symptoms, roadblocks, etc. and each day you spin the wheel and see what your issues will be for that day.  Similar to the spoonie theory (Google this if you are unaware) you have limited resources to handle your issues but no choice in what you will deal with on a daily basis.  Some days are uneventful and not so tough, others are full of bumps and fumbles but you get through it and you fight each and every day.  You don't fight because you want to or enjoy the fight - you do it to live the most that you can out of the path you are on.

Yes I do get to stay at home - no I don't get to do all of those homey things I dreamed of most days because I am either too tired, too confused, too sick or in too much pain.  Every now and then I do get lucky.  I don't have a car any longer and have no control over when or if I leave my house and I struggle with my lack of control in my life each and every day.  It is easier now than it used to be and I am so very fortunate that I live in a time where social media and things like having a Kindle and Pinterest can keep me occupied for hours on end.  I can escape to my little Nirvana in my mind and be running, skipping, dancing - all things I can't do - for hours on end.  I am so very blessed and fortunate to have a few good friends who understand and a Hubby who tries.  I am so blessed that I have a roof over my head and a little corner to call my own.  Many in my situation are not as fortunate. 

Don't misunderstand - this post is in no way a complaint - just my rebuttal to all of those critics whom I allow to make me feel less than I am or that I can be, because I have been forced to make the difficult decision to chose a different path - not the easier one but maybe the one less traveled.  If you are fortunate enough to be healthy and active then please don't waste your time judging others who are not.  Life changes in a heartbeat and not one of us knows when our life may no longer be the same.

Fears, Phobias, Booga Bears and More...

Hello - My name is Linnie and I have a phobia of talking on the phone.  Yep - there it is and I am not talking a little discomfort.....it's bad and has cost me much in my life and I am writing this article today because it now threatens another new friendship.

I realize that most of us have issues relating to our illness that are hard if not impossible to explain.  For me the written word, notes, letters, emails......anything similar have always come easier to me than conversation.  But, for the most part, I will talk your head off in person.  The phone - not so much.  It hasn't always been this bad and has increased with age.  I really don't think of it as an out right fear but with closer inspection, I am forced to admit that is the root of this problem.

For years I worked in an office and was chained to a phone and even worked an eight line switchboard - loved it all.  I talked for hours to friends and family with abandon.  But.....there was a hesitation at times when the phone rang - I didn't want to answer - I wanted to run.  Back in the day you answered it without question because we didn't know who was calling and it could be an emergency - right??? One of the worst disagreements with my husband's family stemmed from this issue and my mother-in-law thinkng it was about her - my own mother just didn't get it.  Fast forward to the age of caller ID and things heated up.  Was I afraid of particular callers or just talking....WTH???

As I travel back through my memory and dig deeper, I find that this issue increased and became a problem at about the time I got sick.  The more confusion, fatigue, etc. that I suffered, the more it was exacerbated ten fold.  When I worked as in independent contractor and had my own business (only because I couldn't work full time in an office) it truly became a problem.  It is all but impossible to avoid the phone when you work with others and need to communicate.  A dream come true for me was the revolution of email.  I would relish the glow of my old Wang computer when I turned it on each morning and easily communicated information and enjoyed relationships with those I worked with.  It was a miracle.

But......friends just don't get it!!  I can force myself to have brief conversations with my children - they are my heart and unless I am wiped out I will always talk to them and Hubby as well.  I do give him grief from time to time when he tries to prolong the conversation - it's just too hard and will usually end in a disagreement.  I will normally put off telling anyone the real reason I didn't pick up the phone until I absolutely have to.  I have a dear friend that I have known for years and she gets it and has even sent me links to articles online about the problem.  But most of the time friends and family walk away - they say it's weird, not real, a cop out.  Even just typing this my heart races and I feel defeated.  No I can't really explain it and no I don't want to push myself over the hurdle....I have tried all of that and just because I may do it today, I won't be able to tomorrow.  For a time when I was on meds like Ritalin, I could push through and that tells me it is all about my brain.  I can't take stimulants any longer due to my A-fib issues.  So that's not an option.

So here I am belaboring this issue one again, digging, working to understand.  I have had to give up much for this chronic illness and this is just one more thing but I release it willingly because the energy it takes to try to pretend it is not a problem is just not worth it.  I accept it and find work arounds.  Hell - I will even make doctor's appointments online, order pizza from a web site, make a reservation with a link.  It's crazy - and I know this!!! I have improved over time - I will make short quick phone calls to make an appointment if absolutely necessary.  If it is quick and to the point I can do it if I am in the right frame of mind.  But having said that, I cannot force myself when my brain says no - I have tried and I just can't do it.  No amount of cajoling, shaming, forcing will work.  These tactics just reinforce the problem and make it worse in the long run.

In defining the problem it appears that there are my factors - lack of facial cues, past bad experiences with friends and family, fatigue to the point of issues with word finding, and more.  I do believe that overwhelming depression factors in for many of us and definitely is a clue here.  When I am especially depressed I hide and the last, very last thing I want to do is have a phone conversation - it is just too hard.

Here are some links to articles that somewhat explain this phobia - but it is different for each us of and we must find out own answers and make our own solutions.  For me I have decided to work around with texts and emails and short calls when necessary.  I have a very fancy new cell phone - why you ask???  Because it allows me to text and email and keep up with friends and family without actually have to talk.  Great lengths I go to but these efforts help me make it work.

http://www.changethatsrightnow.com/phone-phobia/medication-and-drugs/
http://en.wikipedia.org/wiki/Telephone_phobia
http://ezinearticles.com/?Phone-Phobia---Fear-of-Talking-on-the-Phone&id=5892619
http://socialanxietydisorder.about.com/od/copingwithsad/a/phonephobia.htm
These are just a few - there is a ton of information out there about social anxieties and the most important thing I want to express is that this is real!!!

Set Yourself Up......

One of the biggest struggles for me and many of us, is being able to accomplish things we want to do.  That is the one definitive division that lets me know that I am not well.  If I were just lazy or whatever, I would still do things that I enjoy but just not the stuff I don't.  That is the one accusation I will bristle at every time....."but you can do anything you want to do"!  Oh so not true!!!

For me it is a daily struggle.  Days, weeks, even months go by and I don't actually do anything that I could enjoy or love to do.  Then I look back and see my life disappearing in the rear view mirror and I realize that the dreams that I have are just that and will never be realized if I don't find a way to fit just a few into my daily life.  I am not talking big things by any means.....just things that many take for granted and do with ease.  Taking pictures, scrapbooking and documenting the lives of my children, enjoying their big days, crafting or sewing, knitting, crocheting, cooking.  Just normal stuff that I used to so love doing and feel lost without.  I spend a lot of time reading about doing these things and cruising Pinterest and other sites dreaming and planning the one day when I will.....someday.

What I do, when I am able is try to set myself up for success with small things....even just doing some cleaning that I haven't been able to get my arms around.  If it makes me feel good and gives me purpose then it's on the list.  Here are a few of the things that I have learned and work for me.

• I make lots of lists - they make me feel that I have already accomplished something. 
• I use a planner - I struggle with this as I will make great notes, etc. and then forget to look at it for days so this is still a work in progress.  It does help when I actually use it.
• I use a calendar on my laptop to post ideas and things I want to get done or be able to do
• I send myself texts and emails - yep I do.  Just short quick ones like "work in the sewing room".  this truly helps.
• I save anything that gives me motivation in a file on my desktop and or on Pinterest.  Fortunately for us all there are tons of places to find these now and art with a message can truly be a strong motivator
• I keep a small notebook nearby to make notes on ideas, etc.
• I peruse organizational sites for ideas on how to get stuff done - it works.
• I try to force myself to change my routine - I used to sit in a comfortable chair for hours on end and then when I would try to move....I couldn't.  Now I try to sit in a hard chair at our bar in the mornings so that I will easily move.  It works.
• I push myself...hard.  Now I still practice pacing but I just get up and do it when I can....sometimes I can't but when I can it is awesome!!!
• Take small bites - for most of us we can't take on big time chunks or larger projects.  Don't let that stop you - do small things when you can and eventually you will finish up something.
• Above all be patient with yourself.  Frustration is part of the process but try to enjoy accomplishments and reward yourself when you can.  Only you know how hard it is to make these goals and dreams happen - pat yourself on the back.

 These are just some suggestions and I know everybody has their own list.  Learn what works for you and of course it is ever changing because our illness changes.  For me, cognitive issues rule my day and so does fatigue.  For others there are different front runners and the list changes with those needs.  The main thing I have learned is sometimes it is okay to Just Do It!!!

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/