Where Do I Go From Here?

By JD

Author, Reporter-Journalist

My motto for today will be, “lead, follow or just get the hell out of my way”!   Another day I am reminded by someone of my limitations in that all so familiar and convenient phrase…

“You’re doing too much, you should rest”.

“You have multiple medical conditions, and it’s time to consider retiring”.

 

That is how my wonderful and adventurous week will start.   Of course I have heard those phrases more times than I care to count or acknowledge over the last several years, and ignored each one as they spewed from the lips of people who never took into consideration what I want out of life.  It is MY life after all, and should I not be the one to decide when it is time to secede?

My doctor was quite frank when he told me that my MS has progressed rapidly in the last 3 months.  Damn him for bursting my bubble after making me have another MRI to remind me I was not born perfect! I was quite happy in my state of delusion that I was without error.

If one were to troll my social media accounts and you will think I am a picture perfect image of a healthy and active adult.  Looks can be deceiving.  Or perhaps, as my primary care physician and counselor both seem to concur… I am in denial.

Perhaps I am in a form of denial.  I have so many things I want to experience, accomplish, or do that I want to do them when I feel well enough to enjoy it.  I want to be as energetic on the days my body allows me to, so I can enjoy the memories of that experience, when my body allows me only the privilege of thinking and not doing.  If it means the one day I enjoy something fun and strenuous, and I have to stay in bed for a few days afterwards, then that is my choice, let me have it.

How do I explain to myself and to those I love when the days get harder and I just can’t do as much as I used to anymore?  It is hard enough coping with those people I consider true friends seem to distance themselves from me the moment my health took a southward approach.

Media outlets are stewing with hundreds of new research results and medications to slow the progression of MS, and then the three or more pages of research and side effects that are numerous and some deadly directly follow.  Now why on earth would I want to take one medication that would require I take three or four more to counter the side effects?  I think I will just choose to live, and let nature take its course.

When I get the urge to go hiking, do not tell me “no” I cannot do that I will get tired.  I already know I will.  I already am aware I will probably be exhausted, and have to sit down numerous times along that hiking trail and be prepared to drag me 90% of the way.  If you can’t do that for me as someone who cares, then walk away and let me find someone who will. I will set my own limitations my way. I will deal with it, and if need be, I am stubborn enough I will crawl back on my own.

When I wake up every morning, in one way or another my body reminds me of my limitations, and this reminder does not need confirmation.  I try hard to get other’s to see things from my perspective.  At least one time a week, I read or hear of another individual my age, who has passed away from complications related to Multiple Sclerosis, and it is a reality check. MS is not my only weakness.  I do have two other debilitating illnesses and of course neither of them have a cure either.  I try to live every day as if it were a day to experience something I have not before.  There are so many things in life I want to do, experience, or enjoy and since I know not the span of that time, I try to make it a goal to do what I can before nature takes its toll and doesn’t allow for it.

I think to myself. Dear wooden floors oh how I love thee more than carpet!  For with you, I can sport my favorite socks and just slide and shuffle my feet from one room to another instead of having to make the effort in lifting my aching legs to move me to the recliner calling my name.

And yes dear recliner, sporting my favorite afghan upon your back, how I love you too for knowing just the right position to bring me comfort as I sit upon you like a throne. The remote to the television be my scepter.

I am the MASTER of my little domain and I rule this roost.  Life is grand!

Now I just need a few minions who would be willing to follow orders.  Reality bites.

Then I contemplate the stupidity of that previous concept on floor coverings.Was a wooden floor such a good thing?  What if one day I would need it padded for when the sock-floor-shuffle fails me and I land firm and hard on my keester?

Ahh, then I shall laugh and say, thank you dear brown sugar and cinnamon Pop-tarts ® I consumed so many mornings.  You have added that extra cushion to cover my backside so well, that landing on the floor has not bruised my buns as much as it did my ego.   Where the hell is my bubble-wrap?

Hearing this news today.. I am still numb and indecisive.  But I am definitely now creating my future life plans and ratifying my goals, expectations and future adventures.

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