Adjusting to Life with ME/CFS

(Originally published October, 2014)

The news from the doctor was not so good today, or maybe it is that this news was no different from past visits, but my mind can only absorb the hard stuff in stages.

“I seem to be getting worse, not better.” I told her.

“That’s how it is often how it is with this disease,” she consoled. “Sometimes you have to hit bottom before you start climbing back up.”

th.jpgI read my growing list of concerns: sleep remains a problem; eating is often accompanied by pain and abdominal swelling; I have painful swelling in my groin; breathing continues to be difficult; and my legs are unreliable.  Headaches, heart palpitations, sweating when upright, dizziness and flu-like symptoms.  I shake if I try to do anything standing, such as chopping vegetables.  I feel like I’m not getting anywhere.

She nods with each item, recording it in her files, and occasionally asking for clarification. “All typical symptoms,” she attempts to reassure me.  “Set a timer for standing:  try seven minutes.”

“Barely time to prep food,” I mutter.

“Buy food already prepared,”  she suggests.  “And make sure you are sitting with your feet up for meals.”

“Not the table?”  Eating at the table with my husband was the one bit of normalcy I was trying to hold onto.

“Do you have a lazy boy?  Try using it for meals.”  I do not have a lazy boy upstairs.  I will have to eat in bed.

“Set a timer for phone conversations and visits; they are also exhausting.”  I have noticed.

I have been tracking my daily activities, symptoms, and energy levels.  She scans my past four weeks:  nothing but chaos when I examine it.

“I see T.V. quite a bit.”  she shakes her head.  “T.V. is too draining.  Limit it to one hour per day.  Preferably commercial-free.  I’d rather see you writing than spending time on T.V.”

“It is a lot of noise,”  I agree.

In answer to my unasked question, she continues:

“Lying flat with your eyes closed is the best.  Listening to soft music is okay, and maybe books on tape if reading is difficult.  I also think it is time you consider using a walker.  Definitely a wheelchair when you go out anywhere.”

“Will I get better?”

th-1.jpg“In a year you might see a return of energy, but not likely more than twenty-five per cent – hardly enough to consider working.  It takes time.”

The crushing in my chest when I leave is emotional.  You will have to grieve the life you have lost, I remember my therapist saying.  Today, I understand her warning.

Home again, I crawl into bed and try to breath through the heaviness that bears down on me.  Sobs release some of the oppressiveness, but I know it will linger for a while.

Healing is a shift in perspective, I always used to say.  Where is the new perspective here?

Well, I tell myself, Look at the bright side:  I won’t have to worry about wearing make up for a while, so my skin will get a break.  And I’ll have time to let my grey grow in without anyone noticing.  Think of the money I’ll save on clothes.

My twisted sense of humour always comes out at the worst of times.

If talking tires me, then maybe I’m going to learn to be a good listener.  That can’t hurt, right?

And wait!  Didn’t she say she would actually prefer it if I wrote instead of watching television!  You mean, maybe for the first time in my life, writing can become a routine and not an ocassional self-indulgence?  th-2

Could it be that in the very moment I lose my legs, I gain wings?!

Ah, life!

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Permission to write, paint, and imagine are the gifts I gave myself when chronic illness hit - a fair exchange: being for doing. Relevance is an attitude. Humour essential.