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.