quirkytizzy: (Default)
[personal profile] quirkytizzy
If it is too good to be true, it usually is.

I'd spent the day before in an ecstatic bliss of peace, of joy, of contentment...only to wake up this morning flattened like Wiley Coyote against a wall. I hadn't been experiencing true happiness. I had been rapid cycling.

Intrusive and disturbing thoughts, but without plans or will to act on them, propelled Jesse to suggest that I go speak to my therapist to see if further action (such as intake) was needed. I am relieved that her opinion was that inpatient was not needed, only a boost in my psychiatry appointment to get my meds straightened out.

Then okay, another round of the med-go-round it is to be. It's always a process of trial and error, my body and mind paying for the game of Wheel of Fortune every time. I will try at least three medications, every time, only to find something that mostly works, all while experiencing the bevy of side effects that all brain medications come triple-wrapped in.

1:30 AM. An hour that I am altogether far too familiar with. I skipped my dose of Seroquel tonight, as I'd slept 10 hours today and do not wish to add another 10 hours straight upon it.

The lack of my presence in our daily life greatly affects Jesse. He feels adrift, often as if he is living alone. Given that I spend so much time unconscious under the blankets, it is a fair feeling for him to experience.

I do not know what to do to solve it. When I become so tired that I stumble against walls just trying to get to the bathroom, rest is the only thing I can do. And I become this tired every goddamn day.

We are in a Catch-22. He needs me awake. My body needs me asleep. Neither of us gets what we really want, which is an active relationship. It's amazing how little two people can see each other even if they live together in the same room.

I don't know how to give Jesse what he needs. I don't even know how to give my body what it needs. If the body would simply even out, then being with Jesse in my entirety would be easy.

My body has other ideas, though, and they are never good ones.

I know these troubles are not uncommon when one partner falls terribly ill. But knowing it's not uncommon does not seem to ease it. Couples counseling would be an idea, except the problem is my physical illness - something no psychological professional has training enough to curb.

We cuddle more. When I can, perhaps once a week, I try to at least peripherally participate in a sex life between us. As much time as I am able to give, I spend my waking moments in conversation with him.

But that is not necessarily living a life together as two people in love with each other. And I know he is in love, and I know I am in love.

Sometimes they say that love is not enough. I refuse to let that be the case here. Surely, somewhere, someway, someday, progress will be made to make this a relationship again, instead of some waiting game while we pray my disease learns to take a backseat to me actually living my life. A life that includes Jesse where he should be, by my side and not whiling away days on end on the computer because I am asleep.

Date: 2017-05-17 10:43 am (UTC)
cmcmck: (Default)
From: [personal profile] cmcmck
It's like a mega difficult version of my being a morning lark and he a night owl. We sort of manage to meet up somewhere in the middle!

Date: 2017-05-17 02:05 pm (UTC)
cmcmck: (Default)
From: [personal profile] cmcmck
We started out by going to bed just a little earlier and getting up just a little later. I get up first and do stuff like set breakfast then take him a cup of coffee up which we drink while still in bed. I go off and shower and stuff first in the mornings giving him a few more minutes and he lets me into the bathroom first of an evening so I can get to bed first and wait on him finishing off.

Works for us! :o)

Date: 2017-05-17 11:46 am (UTC)
franklanguage: (Default)
From: [personal profile] franklanguage
It's occurred to me that a support group might be useful, if Jesse can make it. There are also online groups if he can't.

You probably already know about these links, but I've heard about a cancer caregivers' group since I've been going to Gilda's Club for bereavement, and I previously had no idea I would have been eligible to attend it while Richard was alive; I never considered myself a "caregiver" because he was managing it himself.

But yeah: the strain of any disease on a couple is like the "elephant in the room" and can't be ignored.

(The above links came from a page of links you or Jesse might be interested in.)
disgruntledgirl: Taken from one of my many yahoo accts, which all mirror part of me. (Default)
From: [personal profile] disgruntledgirl
Record him some videos. It would be sweet. Make some sweet ones. make some instructional ones. Make a few that you are thinking about things and basically leave him a private video blog.
I kicked this idea around last year.

I WISH TO THE HEAVENS I HAD DONE IT.

because now I have a very patchy voice.

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