THE unpredictability Challenge and ME/CFS

Today started off well enough.  It wasn’t a bad day, but it wasn’t a good day either.  It was what has now become a normal day for me.

At around 10 a.m. I took Dekker out for his daily morning walk.  We walked a block and he did his peeing business.  Then we walked another block and he did his pooping business.  We then finished our last two (2) blocks at a little bakery in front of my apartment where I usually pick up a homemade chocolate chip bran muffin.

I felt fine when I went in to the bakery shop, but within minutes, I realized something was very wrong.  I had this odd sensation of fire and buzzing going off in my brain and I started to feel off balance.

I had to ask the owner if we were both on the same page with my order for the next day because I was having so much difficulty following our conversation.  I think she thought, I thought, she was misunderstanding me.  But truth be told, I was struggling to make any sense of what was being said by either one of us.

After I got my sandwich and soup for lunch, (they were out of my favorite muffins) I grabbed Dekker (he waits outside now by the bench like a good boy) and we turned the corner to cross the street to go into our building.  Well, at least that was the plan.

Suddenly, it was as if someone had messed with my internal radar and set if off kilter just a tad.  I started having problems standing upright and was leaning to the right, feeling like I might topple over at any moment.

In addition, I was walking like I was drunk.  To be totally honest, I was very embarrassed.  I just couldn’t seem to grab hold of my body and make it do what I was telling it.

During my struggle, Dekker – who has now lost more of his sight and is struggling outside if I’m not in control – is trying to figure out what the heck I want him to do.  I finally just planted my feet and stood still for a moment or two until I felt centered again, and then headed up to the apartment.

Dekker got my pastrami and the rest ended up in the garbage.  The dizziness and balance problems were so bad; I had to go straight to bed.  In addition, my right ear was ringing so loud I could not hear anything in that ear.  And I was tired; drained.  I don’t mean the exhaustive fatigue I usually talk about with the ME/CFS I have.  This was an insipid tiredness that just hit me all over my body.

I collapsed in my bed and that is where I stayed until about 5:30 p.m. when I was finally able to get up and take Dekker out for his evening routine – only two (2) blocks at night.

Today’s event made me think about the post upnorth wrote on her blog, yesterday.  She was talking about how hard it is to deal with being able to make it to the store one day and then the next struggling to just get out of bed.

I totally related with her post.  It is this unpredictability of ME/CFS that is so daunting.  I had my day tentatively planned out, but in the blink of an eye, all of that went out the door.

It’s one thing to deal with life’s challenges from day to day, but it is another thing, entirely, to deal with ME/CFS unpredictability, on the spur of the moment.

I think this unpredictability is one of the characteristics that get those of us who live with ME/CFS in so much trouble.  People can’t help but wonder how we can do something one moment, appearing to be fine, and then in the next, unable to function, while still appearing to be fine.

I think this unpredictability is also what gets us into trouble with the medical professionals.  We explain how difficult our lives are on a daily basis, and yet, somehow we walked into their office, dressed, showered, and appearing to look as normal as anyone else.

For me – like upnorth- however, the unpredictability is super hard.  It often leads to frustration, disappointment, repeated confrontations with grief and loss, and constant questions about how to handle this particular characteristic of ME/CFS.

I think the reality for me is there really isn’t much I can do to handle the unpredictability.  All I have been able to figure out in these past 20+ years is to do my best and go with the flow.

That probably sounds simple and easy to those who don’t suffer with this illness, but imagine every plan, every special occasion, every date with that special person, every event in your life being impacted on a consistently irregular basis. At some point, I would assume you would become exasperated and throw your hands up in frustration.  Now imagine living that way for years…

Most of us have been taught to plan for those unexpected events that ultimately will happen in our lives. However, with the unpredictability of ME/CFS, which happens too frequently, planning is almost mute.  And the letdown of repeated cancellations, interruptions and assaults on my plans is so overwhelming at times that I can’t do anything but cry, scream or grieve.

I never thought about what a life would look like that was filled with repeated and constant moments of grief.  I don’t think we were ever intended to deal with repeated exposure to grief induced disappoints.  At some point, our psyche, our heart, and our soul need a break. If not, they will become sick as well.

So that begs the question…how do I – or you – deal with the unpredictability of ME/CFS?  I think that is the million dollar question to which there is no answer.

At least, no answer that I have been able to find thus far…

Determined to continue forward,