Update from the hospital to heal the soul

Today is my 13th day here in the psych hospital.

I am envious of all the people who can just lie down at a normal time of the evening, and maybe read a page or two of something, and drift off to sleep. Sleep is an integral part of life... without it, we get unraveled.

I got unraveled.

During the waking hours, I felt I could deal with the PTSD relapse. But the less sleep I got, the less hold I had on day-to-day life. From up-close, though, I didn't really notice. I only noticed that here's yet another night I can't sleep. Or if I did sleep, I would wake up in a screaming nightmare. Then after that, I'd be up for the rest of the night.

I got here after taking too many medicines, in desperation to sleep. "Accidental overdose". If I look back on texts I had with our counselor, I can see the pattern happening. But in the day-to-day, I didn't take too much notice of how things were getting out of control.

This PTSD is very complicated... it's been diagnosed as complex PTSD (CPTSD). It comes from more than one factor in my life's history. I won't get into details. but this "trigger" that happened about two months ago reaches far back into my childhood, it's not about the adult stuff, not the hospital/NF stuff.

My sleeping now, 13 days after intake, is still not balanced. I'm in a withdrawal process, and because of that I'm dealing more with my restless leg syndrome, also. It always appears strongly during a drug withdrawal. It's very hard to withdraw from the family of Benzodiazepines- the sleeping medicine I was taking for 11 years, as well as the Clonex which I'd been very liberally taking in the recent months. It's in the Valium family, and has hooks in a part of the brain that does not let go very easily. I've been under the impression that it's nearly impossible to withdraw from those medicines. But, here I am, doing it. No choice. There are still bumps along the road. On Shabbat I had a **super delicious** afternoon nap, not induced by any medication. That was phenomenal, in my opinion. But it came unfortunately at the expense of night time sleeping Saturday night. I took what the nurses let me have, but I felt I really needed a Clonex to get to sleep. No Clonex, I'm weaning from that. So, I was up all night. I listened to some Torah lessons, and then most of the night was my audio book. Thank G-d for audio books when it comes to insomnia.

My father (Z"L) used to say the best part about insomnia is the next night... you are so exhausted from being awake two days straight that you sleep well the next night. Well, until now that has been true for me. But not now. Last night, Sunday night, was supposed to be the one where I sleep well. Nope. Again, up most of the night. It's the PTSD, it's the weaning, it's the whole picture. At about 2am, the nurse felt so bad for me (I was crying) that she gave me something (that was OK'd by the doctor on call) that wasn't part of my usual regimen. That got me to sleep. But it can't be regular. So, we are still figuring this out. I am again tired tonight, but that has no bearing on whether or not I'll sleep.

What I hope for when I get out of here is a predictable, reliable sleeping schedule, and therapists to help me slog through the CPTSD. And the courage to do it. I closed that carton a long time ago, never really dealt with it. This relapse blew the top off the carton, and now I have to deal with it. I am praying this place will set me up with the right practitioners for me to work through it, so I will no longer be carrying that carton around with me anymore.

Today I also started dealing with some other medical issues I have to deal with. I can make one or two phone calls a day for other things.

My two youngest kids came to visit me today, it was so, so welcome and good for my heart. Also three friends came to visit today, indeed a blessed day.

Signing off from the hospital which heals the soul.

Sarah Rachel Bat Tova

Intense sleep-deprivation (and a surgical consult coming up, to boot.) Long post, make a cuppa tea.

There have been some very good days, and some awful ones. Mostly, I am very, very tired. I haven't gone down another dose in over two weeks because the last time I did it was so difficult, I am honestly scared to do it again. I will, but I don't want to. I really wish I could hide away from life the first week of a dose lowering. But, life needs me in it, no matter what other personal work I am doing in the background. The plan is to do the next dose-lowering on Sunday. I just want to be off this Fentanyl already. On the one hand, going slow is necessary, and I am doing that, and on the other hand, I want to be free from this stuff.

The nights are the worst. I battle insomnia and restless leg syndrome, and they both are enough to make someone honestly go crazy. Both effects of the weaning. I don't get much sleep at night, and am sill trying to get up in the mornings before the entire morning goes by. I dread nights. They go like this: I am extremely exhausted, have taken sleep medicine, and I lay awake for hours. Take more sleep medicine, and if I'm lucky, I doze off. I don't automatically go for the two doses of sleep medicine because I don't want to change one medicinal dependence for another.

If I have restless leg. I don't know how to explain it, it makes me so crazy I honestly want to just scream... jumping out the window has come to mind. Not to kill myself, just to have a distraction from the restless leg- that is how annoying it is. I can be almost drifting off to sleep, then bleep-bleep-bleep-bounce-bubble-ants crawling up my nerves.... my leg starts jumping around on it's own. Then I'm up and searching frantically for a solution, where there isn't one (I try Xanax, sometimes it helps, sometimes a leg massage helps, but nothing *really* takes it away consistently). Robert has also been looking for sulotions, but I don't want to introduce any new meds now. I've even tried sleeping in my very tight pressure stockings I wear for flights, and it didn't help.

Waiting for the approval for the Cannabis. That will change the whole structure of my night. I will soon check with my neurologist to find out if he can give me an updated time table on that. I wish I didn't need it- I want a drug-free life. I want it more than anything. But, I need decent night's sleep, and having been through all I've been through, it seems, for now, my body does not know how to calm down enough to do that. Oh, I should listen to the meditations I've done in my course- I forgot about those!

It's a far cry from a year ago when I said I couldn't not sleep. I would need 12-14 hours a day. We all remember that. yes? From one extreme to another. All because of the Fentanyl.

The woman who does my lymphatic draining every week (Dianna with a beautiful Argentinian-accented Hebrew) told me to drink two cups of soda water a day and it'll go away. Sounds like a "bubameisa" (Yiddish for "grandma's tale") to me, but I'm willing to give it a go.

I'm So Tired. 

I'm not in much pain, though, interestingly! The one thing I was most worried about hasn't happened.
I'm having lots of good time with the kids, making healthy foods, being with them all afternoons. This is the first year I have no helper at all- no nanny, babysitter, no help with the driving, nothing. The kids are old enough not to have a babysitter anymore, thankfully. I've just been very "present" with them these days. There is still way too much driving on my plate, but I am handling it.

I can't even write more I am so tired. Gonna close my eyes....

(Next day now.... Thursday.)

Another horrible night. Slept from about 4 [I think] until 11. It feels awful, and depressing.
The problem is that I am so profoundly exhausted that I can't even read when I have insomnia, I just lay in bed, with my [pink, silky-soft] eye shades on, half conscious. I wish I could be productive during that time, but no chance. My mind is mush.

Life is very, very hard when sleeping is thrown off. I have learned not to underestimate that. The effects seep into every aspect of life. Every Aspect. Been getting many more headaches, too. :(

Next week I am going for a consult with a surgeon.
I don't know if you remember, but last summer when we were on our vacation up north, something in my right groin area started hurting with stabbing pains. I thought I had another hernia- couldn't imagine what else it could have been. My doctor ordered an ultrasound, and all that was seen was enlarged lymph nodes (it was a few weeks after the cellulitis hospitalization from last summer), which is when I started to go for lymphatic draining. Well, that pain still comes and goes. A few weeks ago, though, I woke up with it stabbing again, acute, like the first time I felt it. Doubled over in pain. I happened to have an appointment for lymph draining the same day, so Dianna (lymph lady) tried to work on it. She could barely touch it because it made me jump with pain. Turns out that she is sure it is not lymph-related. It is some part of anatomy which seems inflamed (sometimes I feel it radiating out, as well). I went back to my doctor (GP) and she checked it again, and agreed that it's not lymph nodes. It's some sort of inflamed ligament or something. She said she wants a CT scan of it, but she'd like a surgeon to look at it first, and have the surgeon order the CT. She said that if she knew what to suspect, she'd order the CT. But, since she (my GP) has no idea, she wanted a surgeon to have a look. We're talking about the right side here, the "unaffected" side (which actually carries many effects, but was never operated on).

So that is the 25th of Feb. I don't recognise the name of the surgeon, and it isn't at the hospital, rather at a clinic, which is good. I'll let ya know. Another weird, inflamed, unknown thing hurting me. Boohoo. I tried to ignore it for months, I always fear over-reacting about every little thing, but it is giving me stabbing pains again, so my body is telling me not to ignore it.

(This, because I don't have enough on my plate, Hashem? Really?)

OK, I gotta rest- I have a migraine coming on, which I pray will go away with the medicine I took, because we are going out tonight- all six of us!!! We are going to an English theater performance of the oldie-but-goodie "Fiddler on the Roof"! We splurged on six tickets so all the kids could see it. We had to explain the whole story line, the kids having never heard of it. Live English theater is a rarity here! Looking forward- but please, Lord, take away this migraine.

Up all night. Restless leg syndrome is going to make me jump off a bridge.

...and then there are times like these.

Coming to you from a dark room in the middle of the night, at 3:48am, big event going on early in the morning for Shifra's BatMitzvah (she's reading Torah). I spent half the day with a migraine, the other half doing things that needed to get done, waiting for my migraine meds to kick in, I tried to rest, my body was breaking, way beyond the tired point with all the running around for errands for the BatMitzvah and kiddush. I haven't pushed it this hard since... Ya'akov's BarMitzvah?

I have been in perpetual motion for weeks now getting ready for the BatMitzvah. That is something the I need to avoid doing, it always puts me into pain and other bad situations. Along with that, I am still lowering the dose of the Fentanyl, raising the dose of the Cymbalta, which is actually *supposed to help* with restless leg syndrome. It's making it worse. It is impossible to sleep, no matter how heavily I drug myself, if  my leg is involuntarily jumping and cannot settle.

This could honestly put me over the edge. I gotta keep it together somehow, but I tell ya, having as much pain as I do on a regular basis, and now having this? No sleep? Doesn't particularly strengthen the will to live.

After I ran all over Be'er Sheva and a neighboring town a half hour away, Netivot, it seems that we all have our clothes for the event happening. Even Miss Picky is happy with the dress that is being made by a seamstress just for her. Thank the Good Lord. I went through physical and emotional torture going from store to store with her, just about every day for two whole weeks, and she wouldn't choose anything,  understand her. And I like who she is. We made a good team most of the time.

Now it's upon us. My brothers and niece have arrived this evening, and it is wonderful to have them here. Tomorrow morning (this morning) Torah reading, Shabbat meals for 16 each meal. Big Kiddush, in which Shifra will share her d'var Torah (which is, of yet, not completed), then Sunday night par-tay... getting ready early, going for pictures, etc. A. Big. Deal. And I can't wait till it's over! Monday hang out with the family, probably invade some cafe and order everything on the menu.

But will I sleep tonight? Over the past few days I have been waking up feeling like a flu is coming on, but holding off. Not a good omen for afterward.

I am wearing now a new, improved pressure garment for the lymphoedema problem. I am still trying to get used to it, but it is quite uncomfortable. It was made to exactly my measurements, and has the prosthetic pillow for filling the gape of gapey. It is sooooo tight, though. That is how they keep down the swelling of lumphoedema, so not much choice in my case. Also trying to get used to that, getting used to the dose changes for the Fentanyl often, and also the fact that I raised the dose of the Cymblta- any of these things can make me miserable with restless nerves and a shaky leg out of my control.

I'm going to lie down again and try not to whine too much so Robert at least could sleep. He'll be picking up lots of slack tomorrow morning because of what kind of night I am having. Please Gd, let me fall into a deep, satisfying (albeit short) sleep.

Oh Please Gd.

[Today I started the first of eight classes about medical meditation for chronic pain sufferers, This is led by the awesome neurologist's medical psychologists.8 weeks. Seemed very interesting. I'm in for 
once a week, every week, for 2 hours. I am so interested to learn how to possibly be able to overpower your pain with the power of your brain.]