Do you ever wake up in the morning and just know you’ll be crawling back into bed to sleep for the rest of the day in an hour?
I know, this probably sounds like a fantasy.
It would have been my fantasy when I was walking up at 5:30 to get X to day care and me to work by 6:45 for a 12 hour day.
Now it’s not a fantasy. It’s my life.
I haven’t been writing much recently because I’ve been experiencing terrible fatigue.
I need to triage my energy.
Some days I wake up, get X off to school, and sleep until the alarm goes off to pick him up.
On better days, I require a three hour nap and a bedtime of about 7:30pm.
After playing with X, hanging out with Jon, trying to pick up the house and keeping in touch with loved ones there is not much left.
Of course, besides the fatigue that I didn’t have last year, I also have the ability to leave my house, which I’ve been relishing.
I’m not just hanging out with the computer as my friend anymore.
No, I don’t need to isolate myself. I can have friends over, or go to their homes, or do lunch and have play dates.
I can now do all those crazy things.
I don’t have to sit around and perseverate on how I could definitely, maybe, die from this disease.
Since I can do these things, I have been. I’ve gone to movies and parties and cities.
The opposite side of this double edged sword is, during the week, I feel exhausted.
I need all five days to recover from my weekends.
And I’m still not feeling strong enough or energetic enough to invite Lexi back on the Weekends since the bulk of responsibilities fall on Jon.
We definitely miss having her company.
I’ve definitely been hit with a lot of personal losses this fall, and I’m only now regaining my footing.
I’ve lost my ability to breathe normally.
I won’t play sports again.
I wonder if I’ll even be able to coach X’s teams, which was always the plan.
Some of my favorite memories are being coached by my father, and I always thought I would be able to do the same for my child.
I probably won’t.
I’ve been sidelined in a big way.
Due to side effects from the chemotherapy, the menopause and the GVHD I haven’t been able to have sex.
This has always been my favorite way to make myself feel better. It’s the best coping mechanism that exists, and I can’t have it (at least not for another 14 days or so).
So no sports + no sex= no life.
Needless to say it has been more difficult to drag myself back into the world after I isolated myself this fall.
Everytime I become sick with a life threatening ailment the world slowly shrinks until all I can concentrate on is myself and forcing my body to breathe and move.
Interestingly enough, my maternal instinct is just as strong as any survival instinct I have.
Even gasping for breath in some of the worst pain I have ever felt I still had the ability to hide my dyspnea from Xander and Lexi.
It’s amazing to me, and That does make me feel alive. I am getting my groove back. I'm feeling the Christmas spirit.
But now, I’m just tired. I’m curling up on the couch and sleeping.