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. 

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.

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!