Monday, May 7, 2018

The state of The Union

If I had a nickel (or shekel) for every time someone said to me "I wish I could take your pain away"...
well, money wouldn't help these problems anyway.

Nobody can  take my pain away. Dr. F is doing his best, but it hasn't happened yet. I have had days here and there of amazing improvement, but somehow it always goes back to pain. That's where I'm at now. Pain. Abdomen.

But you know what is actually worse than constant pain?
The eroding of a really great relationship. I'm talking about what, in my blog titles I call "the state of the union". My marriage.

I have to write, but without going into too much intimate detail. I just have to write. I have to let others know that illness takes it's toll everywhere and anywhere it can.

It makes relationships unequal. It's been this way now for ELEVEN years. And we've only been married for 20. The first 9 were us working hard, buying our house, having four babies and living extremely sleep-deprived but good lives.

The second half of our marriage, where we are right now, has been insidiously undermined by illness and hardships that most people will never understand, for 11 years. Our kids are all 11 years older. They are all more independent. We've done our best within an almost impossible set of circumstances. We've had a lot of help from our friends (that's putting it mildly... without our friends I can't imagine where we'd be now. I just cannot imagine). Neither of us have much family here, and the family we do have were also very busy with building their lives and raising their kids.

Nobody talks about what happens in a marriage/family when one partner is always (or nearly always) not well. It's an imbalance in huge proportions. Both partners are overwhelmed with their burdens... one in pain or not well (with all the family's needs in mind while they are helpless to effect changes), and the other taking care of the kids, the house, the paperwork, money issues, shopping, driving, and everything in between. My kids started doing all their own laundry at a pretty young age (Azriel is the last holdout with that, he still doesn't do his own, it's time I pushed him to do that. I have wanted to spoil him, or keep him sheltered more from the hardship that is our family. He's my "baby", and I am guilty of spoiling him).

When the ill partner is the female, things are even harder. Men are not natural caretakers, women are. It is well documented that in marriages where the female is the ill partner, the rate of splitting up is much higher than in marriages where the man is the ill partner.

No, Robert & I are not planning on splitting up. Just to put your mind at ease.
But things are really really really really hard. (cue: tears. me. right now. lots and lots in recent days/weeks.)

I can't remember the last time we had a date night. I just haven't felt well in so long. And he stopped thinking of planning them. It's always pain... body pain or headache pain. Or pure exhaustion. Or all three.

We had a Shabbat all alone three weeks ago for the first time probably since we had Dov (almost 20 years ago). Was it awesome? No. Life is not perfect. BY FAR. But we did manage to have it be good somewhere from the middle of Shabbat and on. Havdallah (the end ceremony at the departure of Shabbat) had us dancing romantically together.

Fridays have been awful, though. I often come into Shabbat with deep circles under my eyes from the crying and hardships from Fridays. It's been this way for a long time.
The dark circles under my eyes don't seem to ever vanish.

I need things a certain way. I can't produce it all myself, I don't have the strength to do it all. Over many years I have learned to give up on much of what I thought I needed. I couldn't do it, so it had to be OK not getting done.

But I'm getting better now, and the imbalance is blaring. I'm getting better, but not better enough. I'm getting healthier, but not healthy enough. I absolutely need things a certain way, and it must be unilateral if others in the family don't care about those things. There are lots of mean, nasty things that come out of my mouth, especially on Fridays. Why especially Fridays? Well, often everyone is home, and Shabbat is coming, and it is the culmination of all frustrations from the week. Last week, if we didn't have guests coming to sleep over, I might have left. I certainly wanted to leave. I don't know where I'd go, but I was in a BAD WAY. Even when the guests came, I couldn't greet them, I was in too terrible a state. I was crying for hours and hours. I finally met them, with red-rimmed swollen eyes, apologizing for not being available sooner. I managed to put everything aside to welcome the Shabbat Queen, sing at the table, bless my kids, and honor Shabbat. But immediately after, the sadness came storming in again.

Things are not good. Not good at all. As I said, I'm getting better, but not better enough. I'm thinking that the rest of my life (and I'm only 50) will be this... not quite sick and not quite healthy. I pray that my treatments with Dr. F will bring me beyond that reality, but as of yet I don't know that. I had a treatment yesterday, and, like usual, I am drained, exhausted, and in pain today. A few needles he put in different places yesterday are really hurting... one is very bruised, right under my umbilicus, so when I lean up against a counter top to wash dishes or whatever it hurts. It'll go away, I am used to these things. I hope that he won't unintentionally burst that encapsulated cyst of infection in my abdomen. The infection ghost always haunts me.

I haven't been a very good communicator to Robert. I am closed off, hurt and upset, and feel so distant. He's hurting, too. My life feels like a complete and total mess, failure, useless, and unproductive. And I'm so angry at NF for taking so much from me.

And I can't open up to my husband, there are too many layers of hurt there from years of being forced to be the ill one and not having things taken care of the way I needed them, but didn't have a right to say because I am the ill one and everything falls on his shoulders. It's an impossible catch-22. He couldn't admit (to me) that he feels put-upon because where would that get us? Now I have a little more life, a little more health, and the proverbial poo-poo is hitting the proverbial fan. I don't have a lot of health back, or a lot of life back.

Dr. Frischman & his wife just left to go to the US for an unknown amount of time. Two or three weeks, maybe more. So I'm on my own to keep trying to heal with the Chinese medicines.

And I need other help. Maybe with Robert, maybe without. It'd be better with him, but that is up to him. I haven't had any counseling emotionally for a very long time, and I need it. We need it. Our lives are not normal. But it needs to be someone very experienced, very wise, perceptive, and spiritual for us to be able to relate to them. Our problems are multi-layered, and haven't been taken care of.

It could be that going off my medicines is triggering the recognition of these issues, but they were always there. It's just that now I am feeling it all, the psych medicines aren't numbing my feelings. It could also be that I am in deep mourning for the loss of both my parents over a very short time period. I haven't really talked much about that, but not a day goes by (or actually an hour) that my heart doesn't hurt from those (these?) tremendous losses. Sometimes I feel so alone and cold from such tremendous loss. Sometimes I feel so desolate and broken, it feels hopeless.

Please don't feel sorry for me. I just need to write things how they are. I need to write it for you, and I need to write it for me. And things are really, really hard. That's reality. It would be better if I could open my heart up to Robert. Let's pray for that.

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