Being out in the World

Some of us with M.E. from time to time are well enough to attempt to get out in the world.  I do this in a couple of ways.  Sometimes I attend an agility class with my dog.  I adapt it to where I can participate. I spend a lot of it sitting on the floor because of POTS, I do only a few of the activities/training exercises and take lots of breaks, I also have them turn out some of the lights in the classroom as they trigger dizziness.  Otherwise, I do very little out in the world.  I occasionally run a quick errand, or go over to my dad's to check in on him...but overall, I just can't manage.  I have someone else grocery shop for me, or run the majority of my "out in the world" errands.

If I do get out:

I feel horrible - like with influenza or a terrible cold
I'm dizzy - POTS dizzy which is light-headed, or M.E. dizzy which is a spaced out/off-kilter feeling
I get weak and shaky especially if the outing entails standing
I crash so bad a day or two later I never want to try again

The best outings for me are short, don't involve me driving, and take place outdoors.  I suffer fewer symptoms outdoors than in closed spaces where the stimuli and artificial lighting do me in.

So this week I decided I needed an item of clothing and went to two stores.  While in the stores, I was weak and shaky and dizzy, it reminded me why the event is so rare, which made me realize how seldom I'm out in the world.  I saw people everywhere - out shopping, out driving, walking around and it brought home how isolated I am, and really just how different my life is from that of a normal 40 something. It reminded me that most people are out in the world every day!

I just don't go out much.  Once a year I try to rally and make it to a movie...it is a rare thing.  But I don't go to a workplace, I mostly don't shop for myself, I rarely attend social events, restaurants leave me shaky and dizzy so I rarely go out to eat.  Because it's hard to even sit up for hours at a time, I just don't get out much.  This shopping event gave me a moment of clarity where I realized what a crazy life I've lead the last 15 years.

That brief outing into the world reminded me how disabled and different my life is, how I create a bubble around myself that makes me feel a little bit more normal, but in reality I can't manage some of the very simple everyday things people do.

I was discussing with a friend (who also has M.E.) recently about severity. I had said something about my case of M.E. being moderate/mild and she was shocked I'd think of myself as mild.  Maybe because I'm aware of how severe and life limiting M.E. can be and I know I am blessed and lucky to be managing things...things like working part time (from home in bed), things like going for very short gentle walks, or even cooking for myself.

Going to the store this week and seeing all the people out and about reminded me how limited I really am.  I'd say I probably function at 20-30 percent of what a healthy person my age would, so when viewed that way I guess I'm pretty severely effected by this disease.  But when the gage is compared to others who suffer M.E. I'm probably moderate.  Just goes to show what a shi*&y illness this is.

And honestly, does it really matter where I am on the scale of severity, or what my life would be like in an alternate universe were I healthy? I don't really think it does.  I just have to plow on the best I can, doing what I can manage.  And I guess I need the occasional reminder that there's a reason I'm not out in the world much.  It's because it triggers such terrible symptoms and makes me so much sicker. There is some "sense" in living in a bit of a bubble, I don't want to loose the function I do have.