Updated: May 6
You know how you have that one physical pain that you measure all other pains against...like...”this hurts, but it's not like the time my (blank) hurt, now that was pain!"...or it sounds more like... “wow I thought (blank) was bad, that was nothing..” it then becomes a new point of measurement for you to compare everything else in your existence too. I think the same holds true for life and as we age our baseline changes and our measuring stick gets wiser and stronger. As a Care Partner I can tell you that every day comes with some level of fear and uncertainty. If you aren't careful and mindful you can end up living in a constant state of fear and anxiety. This is a hard way to live and you're always living with some sort of panic that causes you to react to situations, instead of respond to them, which makes everything seem ginormous and heavy. What I've learned is that if you live like this long enough it becomes a normal state of being... It is a state of never seeing the possibilities, never being OK with where you are at and never having peace or calm. How long can anyone sustain this without going to jail or the hospital? Answer: NOT LONG. I want to share with you a little process I go through every morning because I believe “How you start...Dictates where you end...” My goal is to start the day where I need to start it mentally and emotionally. I run through each facet of our life for instance, finances and household stuff - where does it fall on the Life Impact Scale (I made this up)...1 being all caught up on bills ect...and 5 being holy crap they are shutting the lights off. This helps me figure out where I need to be mentally and what I need to do for tasks. It also helps me to see the whole picture and allows me to identify all things that are OK for today. It's where you can find peace and calm. I find that if something is a 5 and there is a lot going on in Care Partner land, I have to tell myself, “all I can do is the next right thing”... because that is truly all I can do...I remind myself to breath... and lean in to the situation, instead of trying to run away... It has been my experience through this journey that the trickiest part to maneuver is finding normal or a sense of normal. Most of our measuring sticks start at normal and go from there. When there is a chronic condition or life threatening illness, life changes so much along the way, no one gives you a map let alone a stick to measure it. It is the place were most of us get stuck...because I love you. I have to tell you, you are never going to get back to the old place that was comfortable and familiar, you have to find the comfortable and familiar in today's normal. Letting go of what was is a grief process, it is uncomfortable, it hurts and it makes you cry a lot. No matter what anyone else tells you, it is worthy of the tears... At some point you have to take a look around and get a baseline and ask yourself by taking inventory...what is really happening around me, and what makes me uncomfortable and worried...Is it something I can change or do I need to adjust for it, is it a new reality...Everyone’s list will be different, everyone’s scale will be different and how you measure success in your efforts are only determined the goals you set for yourself...be as gentle and kind to yourself as you would be to your neighbor. Everything I figure out and share with you, comes from my experience as both a Professional and Family Care Partner. All the information I bring comes from self development and the school of hard knocks that includes but is not limited to; countless meltdowns, endless trips on my crazy train, (which by the way, I have named the “Sheeny Express”) and two trips to the closet. I have spent a lot of time, tears and energy taking these experiences and making sense of them, figuring out “WHY” they happen from a Care Partner/Human perspective and creating meaning and understanding that help us maneuver the journey better as families and help us support better as professionals. Jeff and I believe that this is why we are on the “Gulf War Illness” path... He signed up to serve his country in 1987 and has been fighting, honoring and serving it ever since, between his contribution and mine we pray that we can make your journey a bit smoother, help you become a little bit wiser and empower you to write an amazing endings to your stories
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