Category: ME/ CFS

Monday Mood: cautious

… or maybe the word is precarious.

The ‘for sale’ sign went up on the house Thursday. The ad online activated Friday afternoon. We’d already had a viewing scheduled before the listing went live.

In the meantime, we’ve been scrambling to pack up the excess and make this house presentable. It’s more work than remembered and we are both exhausted.

Another showing tomorrow, video-taping on Thursday, and an Open House on Saturday, and I’m afraid to admit that I feel a cold hovering.

So, yes, I’m feeling cautiously optimistic, and aware of the precariousness of my physical health.

Might need that ladder.

Circling the Crash

It seems like Winter and a slower pace was just weeks ago. Now, we’re immersed in graduations, birthdays, and holiday gatherings and I’m feeling the pull to do it all. Circling the crash.

Need to polish off my ‘no’ and put it in practice, I think.

A Master Class in Life

People ask: “How can you be so sick; you’re a strong person?” Or I am too positive of a person – how is it possible?

What if it is because of these very things that life has chosen me for a master class – a spiritual quest – not for the weak of heart? What if it’s because I’m a good student?

(Image and art mine)

Myalgic Encephalomyelitis

May is Myalgic Encephalomyelitis awareness month. Also known as Chronic Fatigue Syndrome, this disease is characterized by exhaustion after exertion. The exertion can be physical -taking a shower; emotional – worrying or obsessing; or mental- filling out forms.

The best source of information about ME/cfs, as we call it, is the Bateman Horne Center. They offer resources for patients, caregivers, and the medical field.

Unfortunately, not much has changed since my diagnosis in 2014. Medical professionals continue, for the most part, to know little about this disease. It’s frustrating from the part of a sufferer, and discourages me from seeking help.

I’m sure I’m not alone.

Back Seat Only

I can’t remember a time
when elegance chose me
to sit in the front seat
ride along in style

She’d be clad in white
and I’m ever too messy
can’t control myself
might tarnish the upholstery

She’d want to go shopping
rings and jewels flashing
like Pretty Woman
after the haul

I’m second-hand
typically slink in and out
grabbing what I need and going
lest anyone see me – a disgrace

No, elegance does not choose me
moose built, ratty hair
likely forgot to wash my face
Class passes me by

But I’ll tell you this –
what I lack for on the outside
this heart is solid and sturdy
and I will not pass you by.

(Image my own)

Re-de-fine-d

Ask me how I’m doing
and I’ll say “fine”, not
because I’m actually fine,
but because “fine” is the only
socially acceptable response.

If I said that I have been lying
here, for three hours now,
willing my body to move,
that would elicit unsolicited
advice and tarnish my “fine”.

I’d berate myself for breaking
my promise not to moan,
knowing that complaining
provokes a compulsive need
to fix, which just infuriates me

Because my concept of trying –
which is defined by getting dressed
each day – does not match trying
every new therapy, drug, exercise
offered by well-meaning but clueless

others, who may experience fatigue
at times, but have no understanding
of what is is to be exhausted after
something as simple as bathing,
let alone debating what I haven’t tried.

So, ask me how I’m feeling, and
I’ll say “fine” and we move on
to the weather, or the latest
movie must-see, and I can bask
in the warmth of the contact

carry the conversation into the
void of the rest of my day, smile
to think that I still have friends
who accept my “fine” even though
they know I am anything but…

(Art my own)