Realities of living, and working, with this disease

I had an all-day interview for a new job two days ago.  It involved 4 or 5 meetings with various people, lunch and teaching a class for college students studying to be teachers about using educational technology to “get outside the classroom”.

I really liked the people, the place, the energy and just about everything about it.  I felt more like myself that day than I have in a long time.  I had interesting discussions on educational technology and teacher preparation, I chatted with many very nice people, and in general felt like myself.

And then by the time I got home, I crashed.  And it’s taken me about two days to not feel absolutely and completely drained – just back to my “normal level” of tired and painful.  Clearly that “feeling like my old self” is not sustainable.  I can do it for short periods – but there’s no way I could do it day in and day out.

My current job has been the biggest blessing I could have asked for.  It has allowed me to work from home several days a week and given me flexibility that I would not have had in my previous life as a high school teachers for 10 years.  I could freely schedule doctor appointments, rest when I needed it, work when I felt best and not feel the added pressure of being “on” in a workplace environment when I felt so poorly.

But my current position is a grant-funded position that I knew would end when I took it.  There is a year and a half left of the grant, but it’s definitely time to start seriously looking for the next step.

But am I even going to be capable of doing another job?  I have said many times over the past few years that I could not have been a full-time high school teacher with all that I’ve had going on.  I physically could not have done it.  Not with the spells of extreme fatigue, the pain, the nasty reactions to medications, the doctor appointments, and so on.  When this all went into full swing (almost three years ago), I felt like by the time my current position ended this would all be under control.  I’d be back to somewhat closer to normal.  I knew I’d never be cured of this disease, but I thought that surely in the 4.5 years that I then had left of my job, I’d be able to get it under control enough to be able to function in a more traditional environment.

But here I am, three years later, with the end of my current, highly flexible, position looming.  And I’m no closer to having this disease managed – in fact, I’m even worse than I was before…in both number of symptoms and severity.

Will I even be able to do something else?  I have to.  I have no choice.  I have to help support my family.  But will I physically be able to handle it?  What if helping to support my family each day means that I come home and immediately climb into bed (which is what I did after that all-day interview)?  Will helping to support my family mean anything if then I don’t have the energy and ability to spend time with them and be the mom and wife I want to be?  I already have issues with feeling like I’m failing at both of those parts of my life and that’s without the daily drain of working in a more traditional environment.