Month: May 2015

Today has reminded me of some things:
1. I am incredibly stubborn.
2. I am a perfectionist.
3. I expect the people around me to live up to my crazy high standards.
4. Items 1-3 can be assets or negatives depending on how they are handled

Since I have been a sick-o I have had to learn to be more forgiving of myself and others. It has never been an easy thing.
In fact, I have to learn it over and over again.

The last week, as we have come off of vacation and back to real life and all its myriad of weird shit stuff to solve: dead car, car that was hit in front of house by drunk driver, and… oh! my son has West Nile virus but will be fine, NO WORRIES!!! I have hit the ground running.

I have doggedly refused to admit defeat in the face of my own weakness. Somehow, I always think that if I sleep enough every night, I will somehow prevail and it won’t catch up to me.
Well, that’s dumb.
My previous entry details that I am all infected at the moment.
But hey, the dr. gave me prednisone. Prednisone gives me crazy energy. I run and run and then collapse in a heap.
So today we went out to solve the car issue. We sold one and bought one.
It took ALL DAY.
Tonight, I wanted to go to a family party.
However, it was/is patently obvious to the people I live with that I am out of vroom, vroom.
My daughter and husband looked at me and said, “no.”
I was irritated.
I was aghast.
How presumptive of them.
Well, fuck that noise!
Oh yeah, they’re right.
I am a mess.

I think;albeit very, very slowly, that I am learning that having limits does not mean that I am less than or that I am completely broken.
It means that I am partially broken (which I hate) and that if I want to do stuff, I have to pay attention to the screaming voices inside of me that say, “slow down!”

When I don’t, I get irritated, not just with myself, but with everyone, for not doing my bidding.

I become tired, in pain, short tempered and really, really hard to live with.

I am not saying I am the only one at my home that gets that way: I’m not.
But, being that I seem to have the job of maintaining that calm center at the heart of my home, I cannot do it when I am too sick to operate.

It isn’t fair to me or to anyone else.

All of this brings me to the reason and I cannot go to the party tonight even though I am aching to go.
Pushing has horrible consequences; for me, and for everyone in my family.

I get that.

I finally get that.

That doesn’t mean it won’t happen but it is a very deep thing to finally understand and move towards acceptance.

I have to understand that there is a point beyond all reason where I cannot go. If I go there, the consequences are usually dire. I don’t get to make that call anymore. Chronic illness took that from me.
And, it isn’t giving it back… no matter how much I want it to.
That’s a bitch. It really is.

Ah, Summer! It is here. With all of its glory and heat and extra special humidity this year.

I cannot say that I feel any less stressed or “off of work” like I used to. I am still home schooling my teenager. He didn’t finish everything but we are going at a more leisurely pace.
My college aged daughter is back home, which is lovely and at the same time stressful. She is at that pivotal point in her life when she is almost ready to fly completely solo, but not quite.

Vacation, lovely beachy vacation, is already come and gone.

And what did it leave in its innocent wake?

Snot.

That’s right.

It left: Snot.

Let me paint the scene for you.

Picture a perfect day on a perfect boat in a perfect ride chasing after perfectly charming wild dolphins:
The idea is that you (and other boats doing the same thing) run around after the dolphin pods that seem oblivious or think it amusing, and when the captain tells you, “jump, jump!” you drop out of the boat into the crystal clear and cool water and the dolphins simply swim around and through you.

It’s sort of crazy but very charming. They give you snorkel equipment if you like and you just go for it.

Then there’s me. I tried to go for it. I am a good swimmer and basically fearless when it comes to anything water related. At the first stop, I jumped. I also tanked a bunch of sea water up my nose and into my ears. Normally this would not have bothered me. But, in the era of chronic disease Katie, I knew it was bad. I also knew my energy was already pretty tapped out.

I had infused the day before and yet still hiked up and down the beach. I was pushing and afraid to push too far lest my body pushed back with a giant “SCREW YOU!”

So, I had a couple of choices. I could: A. Feel sorry for myself and whine. B. Put on my big girl pants and gracefully hand other folks their equipment each time we stopped. C. Figure out how to land somewhere in between the two.

I tried to go for “C” with a healthy dose of “B”.

I got back out of the boat when the captain parked us near a beach and we could get out and explore the area. I still made a sloppy mess of getting in and out but I didn’t submerge.

After we were back from the two hour trip we went to eat sea food at a beach front restaurant. It was a great topper for a great day.

Somewhere along the way my son got off on the topic that I sure am a lucky woman to have a husband that doesn’t dump me since I am such a sicko and so, well, useless.

He is fifteen and talks a lot. I don’t think he meant it to come out quite like it did.

But, in any case, it struck a chord in me and stoked up all of my darkest insecurities.

Now, after a week back at home, I am back to my usual whirlwind of teaching, cooking, cleaning, organizing, fixing,
and whatever else it is that I do. And, I am full of snot. Full to the brim with a sinusy, infectiony,
ouchy thing.

I knew it would hit me after the wild dolphin incident. It isn’t too bad and I can keep going.

I will live to see another day!

But, I do feel useless when I can only go until 6 p.m. without collapsing.

I do feel like a burden when I get tired of listening to everyone’s troubles.

I don’t want to wear out and snort about like a little piggy with a stuffed up nose and achy ears and the rest of it.

But, I enjoyed the trip that I planned and made happen. It was good.

Getting out of town is always worth it.

Jumping in and out of boats is also always worth it.

The smoked tuna dip with a touch of jalapeno was also worth it.

It just all comes out in some sort of strange cosmic equation that I cannot explain to someone that doesn’t have a chronic illness.

Smoky tuna dip + Boat + Wild dolphins + Seeing my family really happy + Sinus infection = Net gain.

I was never good at math but I can tell that solving for X is not happening here.

If snot were “X” and wild dolphins were “Y”….

Oh, never mind!

Sickland is a featureless place.
It smells of alcohol and bed sheets and is lonely.

Sickland is a place I have to go all alone. When I try to come out for a visit, things don’t generally go too well. Despite my best attempts, I am often misunderstood, irritating or simply irrelevant.
I don’t know why this is.

I think it is just a fact of life for those of us who go to Sickland often.
Our families and friends have to protect themselves from the ups and downs of living without us. Or maybe it is just too much trouble, I don’t know.

All I know is that it is best I remain quiet and cocooned. If I want to be held or hugged, I have to ask for it, repeatedly. Comforting does not come easily in my family. Nor is it easy for me to ask.

I feel like an irritating, small pet that sits on your couch and poops on your carpet but never really does much of anything.

I struggle to ask for what I need and then feel shunned when I am cut out of the daily life of the family.

Life happens around me. I am not a part of it.

It is difficult.

I hate it.

I hate Sickland.

I would rather fake being well than live imprisoned here in Sickland. I suppose that is why I often push way too hard and end up here. The thought of being confined and alone is so utterly repellent to me that I do almost anything to avoid it.

But sometimes there is no choice.

I don’t get a say in the matter.

That’s why they call it chronic illness. It never leaves.

The unwelcome guest(s) in my body sleep at times but never vacate the premises.

These unwanted tenants are always there, waiting to whisk me away to places I know but loathe: hospitals, doctor’s offices, beds and twilight sleep; days and nights confined to my house.

Sickland.

I hate you.