... trail of the dead

I don’t want to have to follow the trail of email or archives of my online planning calendar to get a picture of ‘what I have been up to’.

It’s true that I feel as if I haven’t had a single day to ‘do nothing’, even though I am sure that I have had several of them in the past month. Being a purposefully un-busy person doesn’t seem to be going as planned.

The combination of Multiple Sclerosis, Avonex, Alertec (for those of you playing along at home – these are meds for narcoleptics that are also given to MS patients to deal with fatigue), Mersyndol, muscle relaxants, and high levels of codeine seem, surprisingly, to be affecting my energy levels. In the past 2 years, less than 20 days have gone by that I have *not* taken some form of downer or pain killer. It may be time for me to realize that the ‘vacation’ that I hope to get by taking these meds ISN’T GOING TO HAPPEN. I have almost forgotten what my body felt like before I reached out for all these pills. It is often hard to tell the difference between physical pain and emotional frustration.

A friend of mine, who has been my other half for 15 years, and I finally got a chance to go out for a long dinner and catch each other up on our seemingly adult lives. After a lengthy discussion about recreation and health – she asked me if I had been able to take my own advice – if I had mourned for a body/ nervous system that I used to have, and moved on to actually enjoying the things that my body now does/ is capable of doing.

I don’t lie about this shit, man. As I have said a million times, I chose early on to NOT be a happy face painted on Multiple Sclerosis. I will not pretend that things are okay when they are not. I will not pretend that things have healed when they have not. I will not pretend that things have been mourned, when clearly, they have not.

While I think it is safe to say that I am through the worst of it, the years where I wanted to erase my body/ smash my body/ ignore my body/ suffocate my body – I certainly haven’t re-engaged with it.

I don’t dance like I used to.

I don’t really know what this post is about. I guess that I am feeling so busy – and maybe part of that busyness (as it is for most people) is to avoid dealing with the dark, looming things that we keep in our lives.