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.

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!

It's All About the Balance.....

As I was about to doze off last night, I thought about the unbelievable balance that is involved in all lives - for all living things really.  Then my mind quickly moved on to the required balance of lives that include a chronic illness.  Many times we think that illnesses like the ones we experience are different because we many not wear the obvious label of being ill.  But...not well we are, and the balance we must find each and every day requires quite the learning curve.

I, like so many, have fleeting feelings on a good day that maybe it's gone - maybe it never existed and I am fine.  Maybe the collective "they" were right and it is all in my head!  Then, like the sun rises, the reminders of my illness creep back in and I am once again reminded that when I push myself out of balance, I will quickly be given small warnings that let me know that more trouble is on the horizon.  I am so very fortunate that I am in a place in my journey that my severe pain is not daily any longer.  If I am very careful and work very hard to balance my life, my symptoms are lessened and I can do a little more than I once could and I have some really good days.  This has been a long process for me and started over 20 years ago.  In the beginning I was miserable much of the time.

So what is the point here - life is a difficult balance for all life forms but if you do have a chronic illness, it is not a choice and it is imperative.  If you have children and or a spouse, a job, etc., the balance becomes even more important and you must save the best of yourself for the most important items on your checklist.  Chose wisely and pick your battles - know your limits and tune into your signals and know when you are abusing your system because as surely as the sun rises and sets each day, your more severe symptoms will return with a vengeance if you push beyond your limits.  This is not always fun - my hubby helps me by reminding me of the small things that I tend to do like staying up too late, not eating right, doing too much, letting things upset me, and over thinking things.  Small things for most but very big things for people like us....know your triggers - make a list if you have to.

Another thing that throws a juggling ball back up to our tightrope is that our triggers change and morph themselves over time so be alert for changes and know your body and mind.  It takes time and being quiet to listen to what your body tells you, but the payoff is so very worth it.  Over time you will have many more good days and learn to lean into this new life and make the very best of it.  It is different but it can be okay too!!

Miracles....What Do You Think....

Miracles are subjective in many cases......sometimes I think it is a miracle if I lose a pound.  Many would say that is just in versus out - science.  We can all chose what we deem to be miracles - or can we?  Sometimes there is no logic to it, we just BELIEVE!  Miracles aren't about logic - they defy logic and common sense.  We don't know why and we can't explain it.  There have been several outstanding miracles around me in the last year and then there are smaller unnoticeable ones each and every day.  I have to be aware and open my eyes wide, sniff them out and most of all be open to the possibility of their existence.  We can all do it - it just takes practice. 

This year I am making a strong effort to Believe and look for miracles around me as well as doing my best to be as positive as I can absolutely be.  What does all of this have to do with chronic illness you say....everything!  It is proven scientific fact that our attitudes about life have a strong impact on how we recover and live our lives.  I know that when I am in a negative frame of mind, I feel much worse.  I know and realize that some of this is not in our control but if we just try to take control of what we can and chose to see things with rose colored glasses, they will become more rosy.  What can it hurt to try - we may feel a little silly at first and some will think we are crazy but hey who cares.....

I have to thank Susan Branch  for the graphic above.  She is a wonderful artist and her blog and web site bring me joy each and everyday and I don't even need my rosy glasses to view it.  She is pure joy and I steal borrow from her all the time.  She is such a great inspiration.

http://www.lilblueboo.com/choosejoy

Another miracle worker you will want to visit is Ashley - she is the artist/brains behind Lil Blue Boo!    Please take a minute to read about and get to know Ashley, Boo and Mr. LBB - they are the most amazing family and Ashley has taken a scary situation and made it joyful!  Her motto is Choose Joy! and she lives it everyday, even with chemo, loosing her hair and so much more upheaval in her young life.  Ashley is the age of my children and I so completely admire her and love her from afar.  But more than that she is an inspiration to me and so many others each and everyday in every way.  Each day I pray for Ashley's Miracle and I hope that you all will do so as well.  She is a miracle for each of us!

Mirror Makeovers Traveling Book........

 I was given a wonderful gift by a friend and I know that anyone who reads it will agree.  Please visit the link below and check it out.  Even for those who don't have cancer, it is a like a welcome visit with a good friend.  I have a different type of chronic health issues and I really enjoyed it.  I found the book to be uplifting and inspiring as well as a guide or map to handle those difficult times in our lives as women.  If you feel you would like to sign up for the traveling addition, please do - it is a wonderful experience!!  There is also a video link below - check it out as well!!

www.MirrorMakeoversTravelingCancerBook.blogspot.com

http://www.youtube.com/watch?v=9choRJAmoYA