Home IS the Place to BE!!

I have talked about this many times but I am very much a homebody as many of us are with chronic illness.  I will find any way that I can to not leave this house and I have gotten very creative with my efforts.  In this day and time we can easily do most things without setting foot outside our own threshold and I take full advantage of that!!

But....there is a difference in wanting to be home and needing to be home...as in not being able to leave your home because of deep anxieties and more.  I am very fortunate that I can leave under the right circumstances and do okay.  I would call myself a somewhat functioning agoraphobic.  In the last few years I have made strides in pushing myself to go on trips, even a cruise, which was monumental.  But day to day still stumps me and has gotten worse in the last year or so.  There are many reasons for this including several deaths in our family and changes we go through as we age.

The most frustrating part is making appointments - especially doctor's appointments.  I miss more than I make and I always believe I can do it until the day arrives.  I need to have blood work to continue with my medications but can't seem to make myself do it.  So aggravating!!!  Ugh!!!  I know it appears that I'm just lazy but really that is the farthest thing from the truth.  I even did a no show on a very important MRI last year and still have not rescheduled.  I remember a very bristly physician's assistant in my doctor's office who proclaimed "why would you do this to yourself" when I didn't get out to get refills on meds or make appoints.  Well that is the million dollar question.....WHY????

I do believe that some of this is actually due to my illness - depression, Fibro and of course and most importantly anxiety.  I ARE anxiety....really!  Anything or anyone that exacerbates that is not my friend.

There are days when I feel restless and need to get out for a short bit but I am very ready to return in short order.  The last 15 years or so that I worked, I worked from home and only ventured out when necessary.  One of the big reasons that didn't work out in the end was my inability to attend necessary meetings and conferences.  No one understood and it appeared that I just didn't want to do the work.
I was happy to work around the clock as long as it was done right here at home.

About two and a half years ago we purchased a small little camper which would allow us to travel and for me to feel that I was taking home with us.  You can follow those adventures here at LittleRedRetro.com.  I did great for about a year and a half and camped every month or so. I did always have anxiety but was still able to cope.  When we went through changes in our lives last year it became increasingly difficult to leave home.  Trips were cancelled or never planned.  Now we are making an effort to get back out there and we have a trip planned for a full weak.  I wish I could say I was completely excited and ready to go but that's just not true.  While I want to do this it is very hard.  Another great advantage about camping is that we take Lucy Loo and she makes everything so much easier!!  For many of us with these kinds of issues, pets are very comforting.  She is with me about 99 percent of the time and I can't express how helpful this little bundle of joy is!  Support animals are no joke!!

While I'm told there is no cure for this disorder there are work arounds and there are ways to still enjoy a full and happy life.  My friends and family make an effort to come see me here at home and I do the best that I can to get out when I'm able.  Do what you can to find a balance if you suffer with these types of issues.  Don't let it take control of your happiness!  There are ways to find joy even in the throws of chronic illness. 

Press the Rest Button.....

Wow - how many times have I wished I had one of these.  I get so used to being able to have a do over, back up, pause, redo in so many aspects of life today.  But.....in real life how can we reset???  I was hoping that taking an actual vacation this year - first one in years - would help me to find that allusive rest button.  Helped it did, but it was not a magical spell that gave me the brain power to do what I need and want to do.  So I have been doing my best to find tools and routines that will aid in this endeavor.  I thought I would share some of that for those of us who have problems with time, memory and so many more issues that hang out with these chronic illnesses.  It's bad enough to not feel well but we all want to regain some control of our days and as a result, our lives.

This past August I was able to participate in a virtual camp - Camp Reset - presented by Cori Speiker

whom I adore and I love all that she does in the reset community.  If you aren't aware Cori's group is all about resetting our lives, taking care of ourselves, and living a more centered and intentional life.  These things are particular soft spots and weaknesses for me.  For many years I've felt that I just existed and made it through the day.  I wasn't unhappy, I just had no purpose or ideals.   Although I still fluctuate every day, I do feel that I am moving in the right direction and taking control of my day to day.  When I lie my head on my pillow at night now, most days I feel that I have accomplished something and I am excited and looking forward to the next day.  I truly believe we all need that in our lives to feel complete.  Check Cori out and I promise you that if you are open to change you will improve your life in so many ways.

Another thing that I have talked about so many times is pacing!  I know that just sounds like so much hooey and I was not sure what others meant in the past when I heard this idea discussed.  Simply put you pace your way through your day.  Using your energy just like any fuel, you move and accomplish things for a bit of time and rest then repeat throughout the day.  While I'm resting I will look through my phone, send messages, read...just whatever I feel like.  Other times I may nap a bit to refresh myself.  No matter what I do while resting it has to refuel my brain and body.  Then I am ready to take on more tasks.  Using this method I am able to actually accomplish things I haven't been able to do in years.  It's always been my go to to push myself to full exhaustion and then I'm down and out for hours and maybe even days.  If you Google Pacing through illness, there are lots of articles out there about this.

One of the most important things I have done to aid in pacing is to create a space for myself to have

downtime while still functioning.  In our little office I have a small love seat that reclines and a work table that serves as my desk.  I can sit in this seat and have my laptop plugged in, my phone charging, and my tablet streaming anything I would like to watch from YouTube videos to television.  The fact that it reclines makes it so much more restful for me.  This little room is just off my kitchen which allows me to get tasks done a little at a time during the day.  In the past I have tried to do this in a bedroom or our living room and it just never worked - I felt too isolated in the bedroom and too much in the way in the main living areas.  I also believe that most of us need to be able to have a quiet restful place to recharge throughout the day.  Our brains are just not wired to handle the static of life in large amounts.  It can be a corner, a cozy chair....whatever makes you feel comfortable.

Now that I have changed the way that I do things I am finding that my rebound from overdoing is so much better.  What used to put me down for days or even a week will now usually last less than a day. This is a major accomplishment for me.  I really believe that finding a balance between doing and not overdoing is one of the most important things we can do to care for ourselves.    I've heard much criticism of self care as being selfish.  I don't see it that way at all.  Self care is what allows us to recharge so that we are able to do for others and be present in our lives.  It's as necessary as food and water.  We can't be there for anyone else if we are running on empty.

I was diagnosed with Fibromyalgia back in 1991 well before it was a popular diagnosis.  I have been working to have an Attitude of Gratitude.  This is another most important component of dealing with chronic illness.  I have found that anger, frustration, and feeling sorry for myself are all detrimental to both my mental as well as physical health.  Believe me, I still have those moments but I feel that I'm in better control of them and they hang around for shorter periods of time.  I've been
through many phases and tried all sorts of things to improve.  Over the years I have collected several other health conditions that complicate my diagnosis.  I know that I am so very fortunate to be able to still function and I do my best to live my life with an attitude of gratitude....some days its really hard but in my heart I know and realize that I am so very blessed.

I hope that some of these tips are helpful to all who suffer from any type of chronic illness.  It is also my hope that we all bring more understanding to both mental and physical illnesses because without love, kindness and understanding we can not continue to heal and share our world with each other.

Because....There is No Choice....

I found this post this afternoon as I was trying to update this old blog. I felt it was important to share because so many are dealing with these same issues.  I hope it will be helpful to anyone in the same place in life!
Early 2016
It's been almost a year since I have posted here.  I have felt just out of words.  Days are good and bad and I have had some extraordinary ones in the past year along with the normal (whatever that is) and insane ones as well.  Same for most I am sure.  For me, I have entered into a new benchmark in my life.  I am at that place where I have grown children that I still worry over and now a mother who has been diagnosed with Dementia and my brother and I must be her advocate as well as her caregivers.  For the most part this is a thankless job as well as stressful and gut wrenching...at least in our case.  With my own health issues and baggage, this is extremely complicated.  But....we continue to do what we can because there is no choice.  We are the only people in her life - she has no other relationships that have survived...very sad.

If you read this blog you may know that my relationship with my mother is anything but simple and has been that way my entire life - the same with she and my brother.  This is also true of every other human she has ever known.  Complicated comes to mind but it is so much more and I can't bring forward a word that actually defines it. For the most part, I feel that I spent my life at a party I wasn't invited to.  I'm here in this world but not because anybody wanted it that way...I'm just one of those things that happened.  I truly am not trying to whine and feel sorry for myself here...just struggling to understand my reality.  My brother feels similarly and our mother lets us know that she changed our diapers, etc and what a burden we both were.  Well it's not like we asked to be here or for anyone to take care of us.....no child does.

So here we are charged with the task of seeing our mother through this journey and unfortunately we don't have the tools in our backpacks that most adult children have when traveling this route.  The majority of individuals in this scenario have the love and care provided them as children and they draw on that.  It makes the tough times bearable.  We look at this women who gave us life, albeit unwillingly, and try to squeeze some good feelings out and believe.....believe that we can do this.  As I have said before, I do love my mother and long for a good relationship with her.  Sadly she is rarely in a place where she can be motherly now and struggles just to be civil.  Many times she does not know us......says we look familiar but is angry with us nonetheless.  So strange how the mind works - not remembering us but remembering the anger and negative feelings.  For me it is evident that she looks at me and I am a mirror of everything that she dislikes about herself - we look just a like.  Also she is quick to tell me that I am just like my father whom she despised.  He was an alcoholic (I'm not by the way) and probably the only person on earth who would have stayed by her side willingly for eternity but he passed on over 40 years ago.  She equates my brother and I with the most unhappy memories and bad decisions she made in life.

Present Day ~ April 18, 2018
My mother left us last year on December 5th, silently in her sleep while a resident at a long term care facility.  After many struggles and frustration, we were able to get her admitted there and we feel they cared for her in the best way possible.  I will talk more about this in coming blogs but I will say emphatically that they more than likely saved both mine and my brother's sanity.  I will always be indebted to them.

As life moves forward, as it does even if we aren't ready, I am always readjusting and dealing with the mental complications that my illness presents to me.  I am so very thankful for supportive friends and family.  My wish is that this blog continue to be a lifeline for those who suffer in the same way.  There is much more to tell about all of our stories.

Did You love Your Mother......

If you have had one of these chronic illnesses for very long then you have more than likely had one of those tests - you know the one where they ask you all sorts of trick questions to figure out if you are really ill or just plain old mentally ill.  Like one is better than the other.  One of the core questions is always "Did you love your Mother?"  Even if she is still living and breathing you get that tricky one.  For me that has always been a loaded question and one ripe with ambiguity.  Ugh......

Many of us suffered with childhood traumas and other combined emotional problems relating to the physical illness.  I am no different and as one counselor put it....it's sort of the chicken and egg thing.  No one truly knows which comes first.  Well today is Mother's Day and not one of my favorites.  Yes I did and do love my Mother and always will.  Not enough she would say but none the less I do.  It's not something you can choose to turn off no matter how hard you try.

Don't get me wrong I have no ill feelings about my childhood - I know my Mother tried as an ill equipped adult who also dealt with childhood issues.  But as I became an adult myself, she was unable to accept that I was, in fact, a separate being and not her possession.  Any attempt I made to be myself - very different from her - she felt as a threat and became angry.  Over the course of my adult life there have been many more years that she was adrift from me than together.  Many years when she refused to speak to me, warned me away from her and let me know in no uncertain terms how very disappointing I was to her.  For many of those years I begged her forgiveness and did my best to tow the line. 

As I have grown older, I have realized that I am unable to be what she would wish for me to be and no matter how I turn myself inside out, it will never happen.  For a short time in recent years, I thought she had changed and accepted me for who I am.  Sadly it was a pretense and she quickly fell back into her unloving ways and let me know once again how short I fall.

Please don't misunderstand, I in no way believe that I am not to blame for my part in this.  I am far from a perfect daughter and never could be.  But for me, unconditional love has to be the order of the day with my boys----it's the very least we can do for our children.  We bring them into this world and say go---how can we do anything less. 

So on this Mother's Day....I say Happy Mother's Day from afar as my Mother has once again professed that she has no daughter and I comply. I applaud her for all of the things she did right and the fact that she tried.   I see pictures of moms and daughters all across my Facebook feed and I am saddened - I have no such images.  I am tired, older now and don't have the bounce back I once had.  I concentrate on my own family and giving them all of the unconditional love I can muster because that is the gift I would have wished for myself.  I love you all more than you will ever know or imagine --- to the moon and back and then some.  For even though I was not hugged or told I was loved as a child, I have unbounded amounts of love to give....

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/

Shock and Disbelief.....

WTH???

I try very hard to aim for positivity with this blog and for the most part I maintain that here.  There is quite enough ugly in this world and in the lives of those of us with chronic illnesses.  But......today I must make an exception.  As most of you know there was a 60 Minutes report concerning disability filings that has slammed most of us with one fell slap in the face.  I am not going to post the video here because it is so biased and one sided but you can click on the link above and find it if you would like.

Now I am not naive enough to believe that there is no fraud in the disability process and I realize that our government is over taxed and the best decisions are not always made.  However, to come down on one group or illness and claim that there is an overwhelming  majority of fraud in that one category is painful and ignorant.  It takes us back years in the fight we have made to be recognized and accepted and most importantly understood.

Most of us suffer with other related conditions that add to our disability and I remember that the judge in my case noted that in his decision - that all of the relating disorders came together to create my disability.  Many of us worked for years after we became ill and tried very hard not to file for disability.  In my case I worked for 34 years and 18 of that came after I fell ill.  I worked from home for 14 just so that I could keep working.  I waited for over two years for the final decision on my disability and my family suffered a good bit due to that wait.  My story is not unique and is similar in many cases.

All we ask, those of us who are chronically ill, is for understanding and respect!  We have been called crazy and much worse, but we persevere - why you ask...because we are not well and it is the truth!!  It is REAL, it is frustrating and not something anyone would ask for just so they didn't have to work!!!  Most of us spent many years working very hard and were proud of that fact so don't belittle or lump us all together as one lazy bunch of so and so's who would lie just to get a measly amount of money that you can't even survive on.

Smell What?......

I know are have all heard of aroma therapy and the idea that smells can make us feel better, help us sleep, etc.  I believe in some of that but mostly I just use good smells to get rid of the bad ones.  Well, Hubby and I picked up one of those decanters with the sticks and the oil and it was pumpkin scented.  I just love fall and normally I will have fall scented candles around and stuff like that.

I don't know if I am just getting older or what but since I opened that smelly thing and the warm pumpkin scent has permeated the rooms in our house, I have felt a burst of Fall Feelings!  I am now a firm believer in this scent thing.  I have actually visualized that it will be cooler when I step outside (that's not happening - I live in SC) and I imagine pies baking, and I feel a little more festive.  It has brought about memories and feelings of Falls past and transported me from the mundane and everyday into a world of holidays, turkey, falling leaves and so much more.

Why do I mention this you say - I am thinking that those of us who suffer from chronic illness and pain could benefit from more of this type of therapy.  I know we have to proceed with caution because many of us are also very sensitive to smells, etc. and I am included in the group.  But.....there are many natural scents that we can use such as vanilla that will do the trick like my pumpkin.  Warm vanilla sugar is another favorite of mine.

Now.....the only drawback is that many of these make me hungry!!!  Ugh!!!  Oh well - good with the bad - right?

Always Learning......

I have been so lax lately about my blogs - just haven't been able to get the words down.  I have lots of things going on in my head - if only there was a direct link to my brain that would print it out for me.  Ha - that may not be such a good idea much of the time.  :-)

I read a very interesting article a few weeks ago and it really hit home with me.  Along with the Fibro and CFS/ME, I have ADD and other learning disabilities that were never addressed as a child.  Back then we just didn't know much about this sort of stuff - I just thought I was stupid and while that may sometimes be partly true.....I don't believe it is the whole story.  This article has really given me the ability to ease up on the crushed self esteem that had been caused by the combination of all of these things.  Maybe.....just maybe it's not necessarily all  my fault.  Time has always been allusive to me and math - lets don't even talk about that - I just simply am awful at it!  This article talks about how many of us have these types of problems and they are common among us.  I don't believe anyone is really sure about why.  Check it out and it may speak to you as well.  I always feel better learning more and the more I know, the better I feel.

http://chronicfatigue.about.com/b/2009/11/24/problems-with-time-math-in-fibromyalgia-chronic-fatigue-syndrome.htm 

Chain of Causation.......

Since I tend to watch a good bit of television, I love comedies - laughter helps no matter how I am feeling and I get hooked on programs that are about families.  One that I recently found is "Are We There Yet?".  It's about a family with tween kids and a mom and dad who are busy working and trying to make this family work.  Always funny, right?  Well, Hubby and I were talking this morning about a line they use on the show quite frequently ~ Chain of Causation.  It's the kids way to explain their way out of things and the adults usually follow along.  I love it and if you are a parent or were a kid, you totally get this.  Just in case you don't, below is the definition.

Definition of CHAIN OF CAUSATION

• A series of events, each of which was caused by the immediately previous event.

• A series of events or situations interrelated and leading to a particular effect

For those of us with a chronic illness, our chain of causation is quite important because it allows us to trace back our steps and possibly figure out what caused a particular flare or symptom.  It's like a puzzle for me and over the years I have gotten pretty good at it.  I over ate on Tuesday night and had some fatty fried foods, and therefore I suffer on Wednesday and Thursday with tummy problems and more inflammation and......therefore more pain as well.  It is the same general idea as the balance discussion, but gives you a little better look at how far down the road the actual deed or action can cause difficulties.  Keeping a journal can really help with this and help us all to make better decisions or actually realizations that we may not otherwise come to easily.

Sometimes I feel like those V8 commercials and want to bop myself in the head - why didn't I know this already or notice that one small action can cause so many negative reactions.  Simple - right?  Not always because there is such a vast array of symptoms and causes.  Sometimes my Hubby is the one who puts the pieces together because he may notice something that I miss.

Good Luck with your chain and hopefully we can all have better days by a little change in our thought process.....thanks to the kiddos on Are We There Yet?.

On the Dark Side.......

 Ugh.....I hate when I get like this and I can't seem to help myself.  I am in a funk and it happens every now and then - not exactly sure why, all I do know is that the deeper I go the harder it is to find an escape.  I don't know if you can label these episodes as depressive or just anxiety or just part of this whole syndrome of illness.  But...one thing is for sure.....it's not pretty and my family knows better than to poke the bear.

The process is always pretty much the same.  I will be going along making small improvements, feeling that I am doing better, feeling like I have a harness on this crap and that even though I have to live my life differently, I can manage.  Then, out of no where it comes in and slaps me down to the floor and says Oh no you don't!!!  Don't even think about it.....!!!  Okay - I give, I say Uncle and I creep back to my corner and start sleeping way too much cause I can't help myself.  I eat sweets and eat too much and don't do much of anything which makes everything worse and round and round we go.

Maybe it is because we have had lots and lots of rain and cloudy days, maybe it's winter and possibly it is being alone way too much while everyone around me goes about their daily lives.  Possibly my meds need to be tweaked.....I sure don't know and unfortunately there is no easy answer and no where to readily seek advice about this hole I am in. 

Another possible trigger for me is when I get overwhelmed with all of the doctor's visits I need to catch up on and keeping up with refills on my prescriptions.  For someone who has issues remembering and understanding things, this can be a daunting task.  As is the norm for me, I put off appointments because I don't want to go through the process of coordinating transportation or asking my hubby to take time off from work to get these accomplished.  My Internist requires an office visit for every refill and this can get complicated especially when it is an important med like blood pressure, etc.  So I walk on the edge and let them get almost all out or completely out so that an appointment needs to be made right away.  UGH - I hate that.

Then it becomes like a game of dominoes - seriously.  OK - we are out of the BP and the thyroid is due too, oh and did you forget that you have been out of cholesterol for months....oops.  You already know you are not sleeping at night and then you can't get out of bed and the itching is getting worse and worse and Hubby is getting frustrated with you.  STOP......my brain is going to explode!

To top off these frustrations, I came across the article below which makes me want to light my hair on fire - OK maybe I am exaggerating but this is just what I have been experiencing.  Most Neuro doctors will diagnose you with a Somatization disorder because - guess what - you have pain in areas they deem to be all in your head.  Guess what - it is in our heads but not in the way this believe!!!
http://abcnews.go.com/Health/somatic-syndrome-disorder-mislabel-sick-mentally-ill/story?id=18606406

All right - I am done with this rant - I will go commiserate with my dog who appears to be in some what of a funk himself.  He gets it.  This too shall pass - I hope.

Are You Itching To Find Out.......

Am I the only one....surely not!  I am driving myself crazy.......ITCHING!!!!!  I keep thinking is it dry skin or just winter stuff, allergies, whatever, but the itching just does not make sense.  I buy special lotions and shampoos and I sleep with a back scratcher hanging right beside my bed because I wake up at all times of the night....you guessed it.....ITCHING!!!!  It is driving me nuts not to mention leaving scars and causing hair loss from my constant scratching.  I scratch to the point of drawing blood and I am constantly blotting up a spot of blood or treating scabs that are trying to heal.  My back looks like I had a bad run in with a tiger or a very angry cat!  I am truly not exaggerating here - my eyes itch, the inside of my nose, inside my ears, and my head wakes me up all night!  What the heck (not the word I had in my head but trying to keep this PG)!#$!%@))!@@#....

For the longest time I have thought it was just me and when I asked my doctor about it he just seemed frustrated again and gave me a prescription for a topical cream which of course did no good at all - none!!!  Well today I finally decided to look up itching and Fibromyalgia and light bulb.....it is part of the syndrome and like everything else it is sensory----not really topical at all.  Whew - that makes perfect sense to me and I don't feel quite as crazy......well I do but a little less.

The big problem now is that I haven't really found a good solution since my itching covers so much of my body.  If you have itching in one spot then cold packs can work wonders because they tend to numb the area.  As always I find Adrienne Dellwo has the best answers to some of our issues.  Itching is no exception and here is a wonderful article she wrote with some great solutions....http://chronicfatigue.about.com/b/2011/08/20/extreme-itch-in-fibromyalgia-chronic-fatigue-syndrome.htm.  She is the go to for no nonsense information and I can't believe I didn't look for this before.

I would love to hear if you have this problem or have any suggestions or solutions.  I am just ITCHING to find out more.....ok sorry but I couldn't resist.  We have to laugh right.....crying makes me ....ITCH?!!!