Saturday, September 7, 2019

Update - I've Lost More Ground


    It's happened again.  I've lost more ability. I've been house bound for 15 weeks. That means I've
lost the ability to leave the house to go ANYWHERE.  Just cruising around the yard (usually a great joy to me) I am unable to do anymore.  No more putzing no more gardening.  I can make it onto the back patio but there my world ends. I cannot maneuver the lawn anymore.  


     Looking ahead to dreary winter weather means it confines me to only inside. Not a pleasant thought. In fact it’s downright depressing. I suffer with depression sometimes especially in winter (note to self start researching those light bulbs you know the ones that mimic sunlight) anyway winter is isolating. I feel if I'm not a part of the world, anymore, that I don't have anything to give.  It's funny but when you can no longer go out you don't realize how much you give up. It's understood you give up going places. But think about it. What else are you giving up? 
- Control, 
- Freedom, 
- Seeing your world, 
- Changes to your world, 
- Being part of something even it's being a part of a crowd (a crowd of 3 people standing in line at the same time), seeing your world from a new  perspective, 
- Anticipating something. I think I think there’s a lot of managing expectations here.  
- Experiencing new things, (believe me its the same ole same old around here day in and day out) now I don't want to be a Debby downer. I'm not looking for pity I'm just trying to explain what my life has boiled down to and what I have been able to take from it.  How I’m trying to take a sh*@#y situation and flip it on it’s head to make it work for me. 

     I have been working on living my life FULLY in spite of being sick.  So different than what it would have been if I wasn't sick.  Reality check-but...I am sick!  I've been working really hard on being ok with that. Embracing it even. That's not to say I'm owning it. Nope, no way but I'm DONE fighting it.  It is my reality whether I like it or not so I can embrace it and be happy, or fight it and make both me and those around me miserable. I did that for too many years. I spent years, yes YEARS pretending that I wasn't sick. Trying to get rid of my problems. Trying to jump through hoops to evade my problems. Trying to live up to others expectations.  I found when I couldn’t live up to them there’s a judgment and I feel like I let them down. In the beginning years I was always pushing through excepting the disappointment that comes when expectations aren’t meant. I was left feeling less than and that I had let them down. When in fact, I had no control over my illness.  I was done with that, so over it.

     I decided to maybe start using my problems -- side note here (this thought change has forced me to grow so much as a person). It's the small decisions.  Ones we all make multiple times a day.  Now 12 years later I'm looking back on it and thinking how incredibly blessed I am to be able to go through this. I know how crazy that sounds but its true. Would I have chosen this for myself? Of course not! But I didn't choose it, IT was chosen for me. I am, however, responsible for how I deal with it though. I never would have grown this much unless I was forced to. We tend to grow in the tough times. I was forced to look at my thinking and change it or continue to be miserable.  I have been working really hard on my empathy, patience, grace, embracing life, humility. 

     I'm not going to lie. It was HARD work. It's hard being in constant pain for 12 years, 24-7. Hard coping, hard being patient with those around me when the pain is so high I just want to scream and cry. Cry like a 2 year old you know what I’m talking about where your eyes are swollen and red, where snot is choking you and wetting your shirt where you screaming and don’t care if the neighbors think there’s a murder being committed. Yeah that kind of crying.  It's Hard sometimes just answering a question politely when I just want to snap some sarcastic answer especially when the person is asking that question to try to make me more comfortable.  I need to get myself mentally in a place where I am appreciating and grateful for the little things.  IT'S HARD!

     I had the assumption I was going to live my "golden" years traveling and enjoying my kids and grandchildren. Bad assumption on my part. I've realized assuming is downright wrong. I have learned I have NO right to assume anything. I am only able to anything, because of grace. Being able to get out of bed in the morning, because some mornings it’s down right questionable. If John’s not home am I able to make a cup of coffee for myself.  I have learned do not assume anything anymore.  Just because the morning is ok the afternoon could change on a dime and not be so good or even worse down right bad. 

     So again we are reassessing.  What can we do to make the house work better for me.  We have decided to add a small porch under the living room window in the front yard. If the world is going on without me. Then I can sit on the porch and watch it go by. I can wave and talk with my neighbors.  Another project is to rearrange the furniture in the living room. By flip flopping the recliners with the T.V. it first off, allows more light to come in for the dreary winter months fast approaching. Secondly, I can sit there in my recliner when it’s too cold to go outside and watch the world go by.  

     This reassessing seems to be a constant theme around here. We spent last fall making changes to the house to make it better for a disabled person.  It took me months to be able to say the word disabled in relation to me. But I worked through that and accepted that I am in fact a disabled person. That’s why I get the “special” blue hanging parking permit for my rear view mirror. And we put a grab bar on the patio so I can go out back safely, we lowered the bed so I could get out of bed without falling made raised garden boxes so I would be able to work in the garden come spring. (John enjoyed the benefits of this project because I was unable to navigate the lawn this summer.) We rearranged the kitchen so I can reach what I use without climbing, because we all know I’m vertically challenged. John spent the spring and early summer planting flowers so it’s
 pretty - beautifying it. So when I go out back it’s restful for me. None of this could have been accomplished without the help of our kids and grandchildren.  A huge shout out of thanks to them. Thanks Chris, Regan, Aiden and Zoe. As my world shrinks, I’m finding we need to reassess yet again and adapt the house for me.  As Pooh said “oh bother”.

     So what’s the takeaway? My thinking and attitudes has changed for the better. As my world has shrunk, yet again, it’s like a microscope has been put on the value of my relationships.  It’s made me appreciate the little things.  All the little things. Because, it’s all those little things that get lost in the busyness of life. And we don’t even realize we lost them until we take the time to look back and miss what we had.  I urge you to take the time. Appreciate what you have now. Don’t assume, there’s that word again, because the future may be different than it is now.  Embracing the “joy” of today. Appreciating what I can still do. Even if it’s just getting out of bed without help.  Heck appreciating getting out of bed at all. Because, as small as my world has shrunk it could still shrink smaller. I say it again embracing the “joy” of today. Sometimes the answer is not the gaining but the losing; which ultimately is a gain. John read me a scripture a few weeks ago which we are mediating on daily. "Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12 NIV.

As always, until we talk again



Art Therapy coloring books in my Etsy shop:
"Under the Sea" Zentangle http://etsy.me/2uyf2lH
"Hearts"    http://etsy.me/1Kdwykm


Wednesday, February 13, 2019

Gratitude In All Things


Last weekend before the storms hit, the weather was absolutely beautiful. I was pleased to be able to get out for even a little while. I wanted to enjoy the mild weather. We decided to grab a coffee. We timed it perfectly. We planned to just grab a coffee and go. Usually John goes inside and gets us a coffee while I wait in the truck. (The noise and pressure of ordering is sure to annoy my "Sensory Processing Disorder". Crowds and noise do not play "nice" together for me. In fact they are in a constant game of who can take me out first). But, there were tables outside, and NO music playing (From my experience - unheard of at a coffee shop). The weather was mild and sunny. There were people sitting at some of the tables but they were talking quietly. So I was able to sit at a table - and enjoy my beverage - like a "normal" person. I used to have coffee dates often, and am sorry to say I took them for granted. Insert big sigh and palm to forehead.


After our coffee we decided to go for a walk. We used to go for a walk almost daily for the exercise - in my former life. "Going for a walk" is a term I use loosely. Now my walk consists of me sitting in the beast (wheelchair) and John getting all the exercise. Lol. I commented to John about this and we had a laugh. But, that got me to thinking. I was so grateful for so much that afternoon like:

*  How much I was enjoying the sun of my face.
*  The mild weather.
*  I was able to have a coffee date at a Coffee Shop.
*  I was able to feel like a normal person having a coffee date. 
*  The fact that we stumbled across a garage sale on our walk. I had just mentioned that morning how much I missed going to garage sales.  

All these thing I am grateful for. That I used to take such simple things for granted makes me sad.  I used to just assume I would do whatever I wanted to do just because I wanted to do it. I would think I want to do (insert activity) and then I would go do just that activity. Life was so easy then! I just cruised along taking advantage of my life's many many blessings and I'm disgusted to admit I was NOT appreciating MOST of it. I was sooooo ungrateful. Hummm.

I looked up the definition of  grateful and found this definition on the internet. 


grate·ful

Dictionary result for grateful

/ˈɡrātfəl/
adjective

  1. feeling or showing an appreciation of kindness; thankful.
    "I'm very grateful to you for all your help"

    synonyms:thankful, filled with gratitude, appreciative

I've been thinking about this a lot lately. Do I show appreciation of kindness? Am I filled with gratitude? Appreciative? Thankful? If I'm honest I would say sometimes. But do I have a grateful "spirit"? This is what I am striving for. 

It's the little things friends. I am working hard to have a grateful heart. To appreciate ALL the little things. The sun on my face, the fact that I was able to get out of the house. To be able to have a coffee date, go on a walk. But most importantly to have John with me to go on a coffee date, and for him to be willing to push me on a walk. Yes I'm going to say it...To have the beast so I was able to get out.

The hymn "Give thanks with a grateful heart" has a lot of wisdom. I am making the effort to adopt this as a new lifestyle. I strive for this to become "natural" for me. Where I am grateful whatever the circumstance. Even in bad or not so desirable circumstances - that's where it gets hard. Really and truly grateful deep in the private part of my heart. The place no one sees but me. 

I am reminded of the psalmist saying "May the words of my mouth and the meditation of my heart be pleasing in your sight, or Lord". Psalm 19:14
Not just saying I'm so grateful for Insert " ____" as I think we all do from time to time. But really owning it.  Having a truly grateful heart. Being content. Lots to think about, even more to apply and hopefully make a permanent lifestyle change. 

As always, until we talk again


Art Therapy coloring books in my Etsy shop:
"Under the Sea" Zentangle http://etsy.me/2uyf2lH
"Hearts"    http://etsy.me/1Kdwykm


Monday, December 31, 2018

I Was Able To Get Out



I was able to get out today. As many of you know my tendons and muscles were damaged 12 years ago. So bouncing around in a vehicle is extremely painful, thus rendering me pretty much homebound. Every time, and I do mean every time - I get into a vehicle I have first counted the cost. I ask myself:
1. How high is my pain before I leave? Will going somewhere increase my pain to where it’s unmanageable?
2. How far is it (translation, how long am I required to sit in moving vehicle before I get to the destination?) 
3. How long of recovery time will this trip require? And will I be able to rest for a couple of days to regain back the ground I lost before traveling?

I know this sounds like I’m talking about going for a long journey. It’s not, I’m talking about going the corner coffee shop. Or driving the 2 miles to my daughters house. Going to Costco. I’m talking short trips here.

Most times I decide it’s not a good idea to leave the house. It’s not worth the recovery time and pain I know will be required. Or my pain is just too high to begin with. This summer I logged 21 consecutive days without leaving the house.

I say this not to complain, but to try to educate. I am excepting my disability and making peace with it. Do your own research before taking whatever prescription the Dr. has prescribed. All prescriptions have side effects! I did read the precautions the Pharmacist handed me before taking Cipro. However, I was given the short, 1 page version. I didn’t know about the long 4 pages of full disclosure. If I had researched more I would have found that “muscle cramps” could mean LIFETIME muscle/tendon DAMAGE. Not the couple of days of stiff muscles I thought it meant. LIFETIME people! Quite a difference. I’m talking Lifetime changes kind of pain, with PERMANENT damage and no know cure.

You might get the impression I’m against medication. I am not! They do have their place. The U.S. Center for Disease Control recommends Cipro for the plague and anthrax. If I had the plague or anthrax I would be grateful for Cipro. However, I did not have the plague, I had a UTI! There were other alternatives that should have been tried BEFORE they hauled out the big cannons. The motto “Never use a shotgun when a flyswatter will do”. Seems to apply here.

Please, please, please do your due diligence before taking ANY medication. Then make your decision with ALL the facts.

As always, till we talk again.

Art Therapy coloring books in my Etsy shop:
"Under the Sea" Zentangle http://etsy.me/2uyf2lH  
"Hearts"    http://etsy.me/1Kdwykm

Thursday, December 27, 2018

Looking back

Well, it’s that time of year again. A time of year where we reflect on our accomplishments, measure our successes, and pat ourselves on the back. Well, someone with chronic illness has a somewhat different outlook on accomplishments/success.

I have spent the last couple of weeks reflecting on where I have landed at the end of 2018. Am I in a different place than I was at the beginning of 2018? You bet, but it’s definitely not for the better. I have lost significant ground. Below is a list of how the year measured up:
Mentally - more struggles here for sure
Neuropathy - huge step back. Big losses here.
Muscle pain - IMPROVED (it’s the little things that make my day)
Weakness in legs - lost ground here - wheelchair needed more often
Vision - has IMPROVED overall but, lately I’m noticing a little loss again.
Sensory Processing - definitely decreased,
Tendons - earlier in the year they were really bothering me. Every step I took I 
    was afraid the tendon would rupture- this has IMPROVED. Yeah!

Overall - Big step back in neuropathy.  It seems like this year is one step forward and two steps back.

So... overall not so hot of a year. Lots of losses, but hey there was a little improvement. I’m definitely learning patience. Oy, for example, John, and I are learning how to navigate AND communicate when using the beast. (Otherwise known as the wheelchair). Him being aware that my feet are out there in front of the chair and not bashing me into something or someone when he is trying to move or turn the chair. Me learning to be patient with John and how we both approach EVERYTHING differently. When wanting move across the room and the obvious way to go would be to the right. John turns to the left to get there. Pure frustration FOR SURE to me. But I now just zip it and smile and know we will eventually get there. Lol

To wrap up I have definitely learned some things this year. And there where more positives too.

I’ve worked hard to:
“Simplify my life” - to bring frustrations down - we have done this by by repairing 
    things not working correctly, moving things to where I can reach it without climbing, 
    getting rid of things saved for “someday” are just a few. Admitting the “someday” 
    ship sailed over ten years ago. I can no longer physically or perhaps mentally do my
    “someday list”.  Doing all the above has cut down on the chaos, and being 
    overwhelmed, I am finding helps me to cope better. More about this in a future post. 

“Communication” - talking more and understanding better

“Realistic Expectations” - I am disabled and can no longer do or live my life as I 
    used to no longer trying to live up to others expectations

“Surrender” this the way it is, deal with it.

“Accept” where I am at = peace

John and I are closer. More in tune with each other. We are in this together...I am not
    alone! God is teaching us to be ONE . Our relationship is better than ever before. 
    We are Both growing spiritually together. We have more than our share of 
    frustrations but the state of our relationship instead getting bitter, is getting better.

And that my friends is my 2018 in a nutshell. 


As always, till we talk again,
Sharon

Art Therapy coloring books in my Etsy shop:
Zentangle "Under the Sea"  http://etsy.me/2uyf2lH  
"Hearts"    http://etsy.me/1Kdwykm

Monday, June 26, 2017

Having To Dial It Back --- UGH

I'm a little frustrated today. I'm realizing I can't draw every day. (Imagine extreme sad face 😞) Due to the damage to my muscles and tendons I am finding I need to give the muscles in my arms at least a day off -- maybe more. 

Drawing relaxes me. When I can't do something or go someplace I can draw. It gives me joy and I find pleasure in just putting pencil to paper. But, I am finding after drawing for just a little while, my shoulder, bicep and elbow is not just fatigued but screaming at me to stop. 

Soooo I need to take at least a day to let my body recover from the task of sketching.  lol Sounds pretty extreme I know, I mean how taxing is drawing? Right? Apparently right now for me it's too taxing. 

So beginning this week I am putting myself on a strict schedule. I'll sketch one day and rest the next. We'll see if there is any improvement in my pain levels.  

So I've dusted off the couch, added plenty of pillows, and stocked up of Iced Tea. It looks like I will be catching up on my reading and netflix.

On another note here is another sneak peek.


Available on Etsy. http://etsy.me/2sohqfm