Dismayed

Like most females in America, I became aware of the intense pressure to stay thin when I hit puberty. I wanted to be lithe & graceful & tall like the dancers involved in Drama with me were.

Instead, my breasts grew large, and I stayed short, at 5′ 5″. Still, I wanted to be rail thin, and I remember when stretch jeans first came out, and laying on my bed sucking my stomach in so I could zip them up. Skin tight was “in”.

I gained weight with my first child, whom I had at age 20. But I bounced back, for the most part. I was active, riding horses, tending sheep & goats, and gardening. I didn’t care quite so much and for a while was okay with being between 125 & 150#.

Then came ME/CFS, and with it hypothyroidism. I ballooned up to 200#, and then spent many years struggling to keep it between 150 & 170 pounds.

I remember being so excited to fit into size 14 jeans again, then size 12′s.

Two years ago, give or take, I started losing weight. For the most part, this seems to be from a serious lack of appetite, nausea from non-stop migraines, and eliminating soy, dairy & gluten from my diet.  I’m simply not taking in enough calories.

Last Fall I was both excited and a little dismayed to fit into a Junior’s size 7 skinny jeans.

But yesterday, I left the dressing room at Target shocked & shaken to the core. I had tried on some Junior’s jeans, and now, size 5′s fit. I didn’t care for them, though, so decided to try on some Misses jeans. At 48 years old, there are many who would say I had no business shopping in the Junior’s department, anyway.

The Misses’ size 6′s were too big.

Then I went back & got size 4′s, and just for kicks, size 2′s.
The size 4′s were also too big.

And the size 2′s?
A size I never, ever, would have thought I could fit into again?
They were so loose I could take them off without unbuttoning them. I tried another “fit” in size 2, but they were the same. Too big.

I walked out of the dressing room and met Rhiannon, who looked at me with alarm, and asked what was wrong. I had a hard time even telling her.

24 hours later, I am still reeling from the shock. I spent roughly 35 years of my life wanting to be just one size smaller than whatever I was, and struggling to stay out of the plus size department whenever possible.

Now, I weigh a shocking 111#. And it has not been healthy weight loss. Muscles have faded away along with the fat. A few pockets of fat remain, here and there, and stretched out skin is struggling to tighten up.

Taking a shower, and seeing my naked body in the mirror, has become a traumatic experience.

I was never one to go to a gym, or work out. I didn’t need to, when I was healthy – I was too busy struggling to take care of animals that outweighed me, hefting 50# bags of horse feed, cutting & chopping firewood, riding horses & hiking.

But now, just looking in the mirror is overwhelmingly painful. The outline of bones show starkly in my shoulders and upper arms. Collarbones protrude & ribs are clearly visible on my chest.

And I keep losing, despite doing everything I can to stop it. I eat avocados and nuts and eggs, and drink coconut milk (high in medium chain fatty acids) and use coconut oil in lots of things.

I never, ever, would have thought I would look this way, or have a problem like this. Never.

I am weak & frail in a way I could never have imagined.

For the first time, I’m afraid. Not for me, but for Rhiannon. She’s nowhere near ready to lose me. But a quiet voice in the back of my mind keeps saying I need to get ready, and get her ready. Re-write my will, and clean the disastrous mess that is my house, so it doesn’t fall to someone else to do it. Given I barely leave my bed, that’s not likely to happen.

There should be tears. There ought to be. But I just don’t cry anymore. I think I’d feel better if I did.

There is a part of me that’s in deep mourning, for the lost strength of body I took for granted so long.

Another part of me, deep inside, has gone very still & silent. I don’t want to talk. I just want to stare out over the mountains, and let this sink in.

I feel like Alice did when she fell down the rabbit hole. All because I looked in the mirror, and tried on size 2 jeans.

This is so surreal.

When Its Not All Puppies and Kittens

Earlier this week, a Facebook page I “Like” put up a pic that seemed to have been written by a fellow ME/CFS/FMS patient. I’d show it to you, but it appears to have been removed, likely because it was a little too honest. EDIT: thanks to Barbara, I have it!

The response to this was interesting. I don’t often read the comments on pics, because there are roughly 400 pics in my FB feed a day. But I read these, in part because this image & these words were so different from what this page, which belongs to a CFS/FMS support group, posts.

A few people commented that yes, that was it, exactly! And then came the criticism, along the lines of “I come here for inspiring & uplifting information, not something like this!”

And it was that criticism that made me kind of angry at the time, because we all feel this way, at least some of the time. You would have to be made of stone to not feel sad, depressed, angry, frustrated, and lonely at least some of the time.

But that’s just not how you’re supposed to react to an illness that a) robs you of your ability to work, b) to attend family gatherings, c) to have a social life, and d) to enjoy even simple things you used to take for granted, like going to the movies, or watching tv. And also, of course, an illness that leaves you with an overwhelming exhaustion, chronic pain, an underperforming GI system, a brain that has a hard time thinking, and do I really have to go on? ‘Cause it’s a long list & I’m sick & tired & in pain.

No, you are supposed to only look at pictures of kittens & fluffy bunnies & flowers & read inspirational quotes & sayings in your spare time, when you’re not researching into something, anything, that might make you feel better.

You’re supposed to keep your chin up, never lose hope, never give in, because you’re in a terrible fight, and allowing yourself to grieve for everything you’ve lost, well, that just won’t do. Not in our society.

Which makes it even harder to endure this pseudo-life.

A month ago, I put up a post, We Know The Enemy or ME/CFS/FMS Explained Again, that through the miracle of the internet & our social networks, was read by over 800 people, instead of the usual 50. I’ve been working on a very long post in response to that, but seems this is going up first or instead of.

Because, when I finally got over the shock that a blog post I had written to my brother was going “viral,” I thought to put my contact info to the right, and some of the things people wrote to me privately were so very heartbreaking. Things like being pretty much disbelieved by everyone in their lives, feeling like they were dying ever so slowly, and yet no one even believed they were really sick, including their doctors. They were so relieved to connect with someone else who was where they are, and who “got it.”

Yes, I get it. And I also sometimes get very frustrated, sad, anxious, depressed, and angry.

And I’m not afraid to say it, or talk about it.

I’m even going to go out on a limb here, and say something else we almost all feel at some point, maybe not in the early years of illness, but once you reach a certain point: it’s hard sometimes to keep on living. To even want to keep on living. Sometimes, I feel like nothing but a burden, or I’m just so very tired, it seems like a lot of effort just to keep breathing. Sometimes, it just seems pointless, and sometimes I get tired of saying, “well, I’ll try again tomorrow.”

All of which is perfectly normal for a person as sick as I am, and as sick as you may be.

What’s not normal, in my mind, is that in our culture we aren’t supposed to ever admit our own true feelings about the wreckage of our lives; we’re supposed to keep fighting to the very last breath, and goddess-forbid you have a negative thought – better keep to those positive affirmations!

And yet. The suicide rate amongst our community is tremendously high. Many of us will admit privately to having “the agreement” with a close friend or family member – that when we get to a certain point, we’re going to go out on our own terms, and we’ll let them know so we can say goodbye.

Maybe, if we actually were allowed to talk about our feelings – the sadness, the anger, the desperation – and admit to having them, it would help.

Maybe, being guilt-tripped for even having negative feelings is only adding to the strain.

Maybe, we should all recognize that deep mourning for our previous lives & health being lost is normal.

With many of us alone because family & friends just can’t or don’t want to understand, being open & honest with each other becomes even more important. So is linking up those who aren’t connected into the patient community.

Linked together, we are stronger. When one of us is frayed to the bone, hopefully another member of our community will be there for them.

There are just some things that only another person with ME/CFS/FMS/Lyme can understand.

Like being sick & tired of being sick & tired.

Just for Tonight, And Maybe Tomorrow

Note: This is not the post I’ve been meaning to finish, the deep & touching one. That will come when it will…

“Brown hair zig-zag around her face and a look of half-surprise
Like a fox caught in the headlights, there was animal in her eyes…”

“Oh she was a rare thing, fine as a bee’s wing
So fine a breath of wind might blow her away
She was a lost child, oh she was running wild
She said, ‘As long as there’s no price on love, I’ll stay.
And you wouldn’t want me any other way”

          - Beeswing by Richard Thompson

Just for tonight, and maybe tomorrow,
I quit.

Just for tonight, and maybe tomorrow,
I’m going to be the person I was born to be.
The wild child who ran barefoot through the Forest,
The sapling Ash,
The dryad in training.

Just for tonight, and maybe tomorrow,
The trash can wait,
And the worries, too,
As I slip out from under responsibilities
And stress
And sickness
That threaten to drown me.

Just for tonight, and maybe tomorrow,
I’m gonna hold a bright leaf green stone,
And be young & free again,
Running wild through the forest in my mind.
Listening to the wind & scenting the rain,
But I refuse to be swamped by the migraine.

Just for tonight, and maybe tomorrow,
I’m gonna take enough meds to cancel out the pain.
Grey-streaked hair washed & finally clean again,
I cut it with abandon.
Silver-brown hair zig-zags around my face,
Curls over the tops of shoulders.

Just for tonight, and maybe tomorrow,
I refuse to be M.E.,
I’m gonna be me again,
The person I was born to be.
I’m gonna hold a bright leaf green stone,
Running wild through the forest in my mind.

“Oh she was a rare thing, fine as a bee’s wing
And I miss her more than ever words could say
If I could just taste all of her wildness now
If I could hold her in my arms today 
Well I wouldn’t want her any other way.”