DID I have did and i'm really struggling...

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Hope4Now

MyPTSD Pro
How are you going....
Thanks for asking. I went a little nuts yesterday and today--really crashed myself out with the driving need to get through all the stuff. But I'm okay-ish. Feeling pretty numb about it all. Actually the two things that really "got" me weren't about my uncle at all. One was a citation of congratulations for my dear grandfather for his work as a judge, and the other was a program I designed for my mother's funeral.

Mostly I keep thinking about how very unimportant "stuff" is in the grand scheme of life. What really mattered was all the lives my uncle touched in his sixty years of social justice work, and his own spiritual work. All the "stuff" means little (except, of course, his sermons--he was a priest, and I value "hearing" his words).

I guess I haven't yet fully grieved his death although--very out-of-character for me--I sobbed my way through the week just prior to and including the funeral and burial. Now, I don't even feel much writing to the hundred or so people who sent their condolences.

I am very confused.
 

Hope4Now

MyPTSD Pro
The mania finally has fizzled. Not sure if it is the meds, or just that I crashed. I have managed to stay in bed at night until 5 AM (except for one night) for around five nights now, so that is good. But I realized the other day that all of me is just so sad. The frenetic activity made me happy, but now that it is fizzling and I'm left with all the usual pain and fatigue and malaise and inner chaos, I'm just so sad through and through. Trying to just "be with that" as therapist Yoda would say.

Part of it was that on Saturday when I'd gone to the town where my daughter attends school to drop off some new work for an art show, we were planning to go to lunch, then I would go home to rest, driving before it was dark. When I pulled up to the dorm, I heard screaming. Now how sick is this? The first thing that went through my head was, "Oh God, I hope S hasn't fallen down the stairs!" When her friend opened the door for me, the first thing he said was, "S fell down the stairs. We're waiting for campus security to come." My "MOM" part kicked in big time, overriding everything else. I didn't get home until quite late that night and I immediately went to bed--couldn't even speak.

Thankfully, her only real injury was a badly sprained foot, so she's on crutches and in a big ole boot which will look lovely when she sings Mozart's Mass in C Minor with the symphony orchestra next week in her new long black dress! Hee hee, that is one of her main concerns (no high heels and the necessity of sitting in a chair when everyone else will be standing), other than the difficulty of living on the third floor of a dorm with no elevator and stairs outside too. Nice to be 16.

Today I see the psychiatrist, Wags. I am hoping she will take me off the Risperidone altogether. Not sure what we'll do about the klonopin which has been helping me get to sleep but you can't stay on it regularly for any length of time.

My therapist is going on vacation and I will not see him for two weeks after today. While most of my parts are delighted that he is taking this time to care for himself, the young ones are very distressed. I'm not sure how to deal with that as they've been very active of late. I can't think of a single thing to do that would make any of them happy or feel safe and secure.
 

Hope4Now

MyPTSD Pro
Not only is the mania gone, but I've plunged into depression.

The only reason I can think that these kinds of severe highs and lows didn't impact my life too badly for so many years is that I was both physically strong and active and very, very busy. The first helps with the depressions, at least when you're doing things that are so intense (like climbing big mountains) that you can't be depressed--you just have to keep going. The second, busyness, kind of hides the manic stuff some. Plus for so very many years, my life was completely dictated by a managerial team for whom anything other than "normal" was completely out of the picture. Driven by these energies. Now, my body is ill, and my parts are seeping or exploding out all over the place, and inner chaos mostly reigns. Externally, I am doing the best I can to move slowly and do one thing at a time, but do it. I cannot collapse now.

This depression is a bad one. It started on Saturday and within a day or two I was back to the more intense suicidal thinking. But each time this kind of thing happens, I feel a little more confident that I can manage not acting on these thoughts and plans. I really truly do not want to be hospitalized again--being locked in, having no access to my therapists, and doing stupid activities, and eating bad food, and not being allowed to go outside, and being surrounded by people who have zero understanding of DID just makes everything worse. So I will only go to the hospital if I really feel in danger that I will act on the suicidal stuff. That is the only thing the hospital is good for, as far as I can see.

I shared this with Wags the psychiatrist and she has put me on a short course of Wellbutrin because it works well with the other stuff I'm on and should show some results within a few days. Supposedly. This is a very bad time of year for me, generally. I am hoping I can get out into the sunshine today, for it looks to be a clear day.

I got all my bloodwork back. Am to start treatment on an unusual strain of Lyme Disease that is not generally tested for, and the tests are highly unreliable. This, along with the mold treatment, is my last-ditch effort to heal myself physically. And I am facing the fact that I'm having real issues with my hands from using my canes. I don't know what I am going to do about that as I need both my canes and my hands. I couldn't even manage my scooter the other day because I couldn't grip the accelerator. Sigh. I don't want to get to the point where I have to use an electric wheelchair, but it may be coming to that.
 

Hope4Now

MyPTSD Pro
I've been offline for a long time. Just overwhelmed and trying to get back to some place of normalcy. LOL. Got through my rough time without hospitals (Yay!) Have fended off the suicidal and self-harm stuff (BIG improvement), am inside my body more with heart-centered/love/compassion focus rather than just intellectual (thank you to the amazing Tara Brach guided meditations free online). All my issues are still raging, but I am managing decently. I'm off all meds except supplements, Strattera, occasional Klonopin, and Lamictal, all of which seem to be helping (or at least not hurting). And...made the leap to order CBD oil today to try out for the pain.

The pain is a huge issue right now. I was evaluated and rejected from the program at a pain management center to which my doctor referred me (but at least got the fibromyalgia dx reaffirmed by a neurologist). The functional specialist doc said I was too disabled for their program. They put me in with a CBT therapist. It SUCKS. CBT is good for some things including fibromyalgia--but the approach of incremental increases in activity massively triggers my chronic fatigue syndrome, and then the fatigue triggers the pain and the DID symptoms. A nasty cycle. But I have to keep seeing this guy if I am to keep my private disability insurance.

Started a 1:1 physical therapy program at a different place. I like the guy I'm working with but it's all the same stuff I did for off-and-on PT for over a year a while back. I get stronger and more flexible, but the pain stays the same or worsens. It is way worse right now.

So I am in a huge sort of triple bind. CBT and PT people say do more and more. Therapist and psychiatrist say don't push yourself. Private disability company insists on continuation with CBT and PT. I've gone way downhill since starting CBT and PT. AAAARGH.

Fingers crossed that the CBD oil will help when nothing else has (some sort of derivative from the hemp plant that has virtually no THC in it).
 

Hope4Now

MyPTSD Pro
So...
I've stopped the physical therapy (but am still doing the exercises). I made zero progress in six weeks. Not worth the energy of getting there and the expense of performing exercises I am perfectly capable of doing at home.

I wrote to the doctors who evaluated me at the Pain Center and whose evaluations were filled with errors. It has been two weeks and I have heard nothing. Argh. Cannot send their evaluations to my insurance company or I'll be screwed because they are not consistent with the other reports at all. I am going to divorce their CBT therapist on June 7th which will be my last appointment with him. His instructions for what I should do made me much sicker (except of course the meditation which I do anyway). Screw my disability company if they have complaints about this; I refuse to make myself sicker than I already am.

I tried the CBD oil. It seemed to help a little, but the dose was far too low. I have ordered a much higher dose which hopefully will last me longer and be more effective!

I have been working very hard at doing activities in microdoses (no more than 20-30 minutes), then lying down for an hour or so before embarking on something else. This seems to be helping, but it is driving me a little nutty.

On the good stuff...my garden seedlings are sprouting and I don't have much more to do as far as planting. Yay! "My" crows have been visiting, though sadly seem to have decided to nest elsewhere this year. Tons of birds in the yard. One bunny only so far (cute, but hopefully he won't eat all my lettuce this year). My daughter comes home from boarding school today, and I'm taking her to a weekend songwriting workshop with one of our favorite singer-songwriters. I'm not doing the workshop, so I will have lots of time during the day to rest and enjoy the woods at the center if the predicted rainstorms have some breaks in them. My son will be home soon from college, still beaming with pride that he won a big award for research in the humanities and social sciences that he'll be using for his senior honors thesis (Yay we don't have to pay!). And, I'm taking an online course through the Shift Network that is outstanding already after only two classes. I'm very excited about what I'm learning and experiencing!

I'm still not sure I believe I'm bipolar along with everything else, but if I am, I quite like the state of hypomania (except I can't sleep...up at 4 AM today). I am, supposedly, a rapid cycler (ultra rapid actually), so hopefully sleep will return to me soon. I do not want to restart any medications, as I was sleeping decently for 3 or 4 days last week. My real challenge is to stick with the resting between little bits of activity, even when I'm feeling wildly motivated and energized. Hopefully this will prevent or at least mitigate the major crashouts. The "parts work" I'm doing with Yoda, my IFS therapist, is going pretty decently. I'm still trying to get the hang of this co-conscious thing although it continues to be very difficult because so many other parts come zooming in and shut things down or hijack me in other ways. But am getting better at getting grounded if I can do what I need to do before the hijacks come. :O

Wish me happy hypomania :). It lets me write and paint and do the things I love to do.
 

Hope4Now

MyPTSD Pro
Are you on a mood stabilizer?
Yes and no. Psychiatrist has been pushing, and I've tried many--and I do mean many--over the past few years, but can't hit on the right combo either because of intolerable side effects (lithium gave me really bad tremors for example), but mostly because they make me extremely depressed and lethargic which then has to be offset by anti-depressants...and so on. I decided to remove myself from that spiral of pharmaceutical cocktails. Right now, I take lamictal and occasional klonopin (which helps a lot but I can't take regularly because you adjust to it...). I also take strattera for ADHD which although it can be somewhat stimulating, helps me mentally regulate and better track the rapid cycling (vs. regular normal mood changes) of my system. The meds are still a work in progress. The CBD oil I've been experimenting with seems promising as I'm trying to hit on the right dose.
 

Hope4Now

MyPTSD Pro
I have confirmed something I have suspected for a long time. This weekend, I am with my daughter in the middle of nowhere in New England. She's taking a songwriting workshop with Dar Williams, and I'm along for the ride because she's too young to be here on her own. This place is fabulous...zero sounds of the kind of world I live in at home. Surrounded by woods and creatures (a bear last light, the most gorgeous moths I've ever seen, a chipmunk who has followed me since I got here, distant howls of something or other, birds, and the hooting of owls. I love it and feel so centered. YET, there are many people here too--some in the song workshop, some in a sustainable agriculture training program, some living here long-term as volunteers. A wide variety of people, both friendly and kind. A long time ago, @shimmerz posted a thread about Shimmerzville which was/is so fun. Well, this place provides an aspect of Hopeville for me. I like simple living. I like being in the woods (or by the sea) away from the bustle and stress of what most people call "normal." I used to wish to live alone like this. But as I've come to know myself better, I realize how important it is for me to feel connected to other people as well. This place has offered me both this weekend, and for that I am grateful.

Yesterday morning around 5:30 AM, I also learned some good lessons. I had a bad crash on my mobility scooter as I drove too fast up the driveway of the farmhouse to get coffee. Nothing broken, but it shook my body badly and I had a hard time getting up. A few volunteers from the kitchen found me and came to help. The last thing I remember was being horrified that someone had seen me down. I insisted "I'm fine," and managed to stand up and laugh about my reckless driving. Then I collapsed. Apparently, I continued to get up and say, "I'm fine," then collapsed again until I heard someone say, "Maybe we should call 911." Ummm, NOT. That got through to something. I agreed to stay lying down on the ground for a while, then let them help me to a chair and get me some juice. I stayed there for quite a while and eventually was able to walk with their assistance into the farmhouse where someone, thankfully, got me a very strong cup of coffee.

What I learned is that I have a very strong but screwy part of me that insists to others and convinces me that I am "fine" when I am really not fine at all, and this can be dangerous for me. This part needs some updating and attention. And that there ARE kind people who will help me without hurting me. And that I need to learn to receive help and care as well as giving it, and there is no shame in that. And that I need to practice feeling vulnerable but safe at the same time. Although I am so often wishing to be alone in some remote place, I was so very grateful for the people-care I was able to receive. This is a good place.
 
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