Strange Star

[Deleted member 12723]

I need a vacumn to clean out my soul as well! Way to go on the videos what a nice break that was to me. I so hear your need for someone to hear, see, and believe you and listen to you and help you. I so understand your struggles. You are so gifted in the art of expression and I appreciate this about you.

Hang in there and good luck with the sculptures and am so glad you have that. Many hugs.

 

[shimmerz]

There was a point in time (several actually), where I noticed my symptoms were 'too much' and determined that I needed to 'take a break' from all of the therapy. Or just some of the therapy. So I would change things around. And I would sleep, or I would go out for coffee (even that was huge at the time). And I would try and let myself 'just be'. This constantly checking the landscape of 'normal' was to much for me sometimes.

A couple of things to consider:
1. Are you on new meds or off of old ones?
2. You journal a ton. Can you see when this started?
3. Have you anything to ground to? A routine? A friendship? Even just for a few moments a day?
4. You said that you were okay for two hours after sleeping. Was there something that antagonized you around the two hour mark that you can think of?
5. Are you expecting too much from yourself right now?

Love and hugs to you my friend. Always
Shimmerz

 

[Hope4Now]

After a 50 minute gripe/fear/overwhelm session with Yoda about my physical health (yesterday, my brain felt okay just not my body) and coming home feeling like the session was a total waste and totally disconnected...I got online to see what I could figure out for myself. My physical stuff is getting way worse, even though I think my mental stuff is getting a bit better. There may be some relationship here (e.g., a lot of stuff has begun to open up in me in terms of accepting this reality of my own fragmentation...and around this same time I have started having way more nightmares and flashbacks). Anyway...something is very wrong in my system; I know this...am trusting my instincts on this one. The question is what to do about it.

Because there isn't any person who is going to be able to help me know what to do. Yoda is about the best resource I have on this, but he doesn't have medical training. Part of his role is to support me in whatever seat-of-my-pants healing attempts I tell him about...and to challenge things that are maybe not so healthy but coming from parts. This is helpful so long as I communicate with him, which I don't always do.

I do know I have to somehow find a way to be consistent in figuring out what is working to make me feel better and what is screwing me up. I have never been good with consistency when it comes to my own self care. I have good intentions, but they usually get derailed almost instantaneously. So todays job is to come up with just 3 things I will do every single day as part of my healing. Things I am not doing already with any consistency. Like following good diet; gentle stretching and movement etc. Theres lots of things...I have to decide which ones I want to focus on working into my day.

I am convinced that something is up with me physically. My doctor did end up referring me to an endocrinologist, but the person is booked for 6 months. So I need to find someone else. In the meantime, I binge read more about thyroid function and adrenal fatigue. And I found Dr. Axe, so am excited about those suggestions...especially ashwaganda supplement. Will journey to Whole Foods (what we call Whole Paycheck) today to purchase some of these supplements. Perhaps I don't need a physician to do a million blood tests. I mean, I have all the symptoms so why not just try the "cure." And see how I feel. That's the plan. That and finding a new doctor for my primary care...a doctor who is well-schooled in mind body medicine.

Yesterday morning, I couldn't walk, the pain was so bad. But I did because what else do you do? It took me 15 minutes to get down the stairs to the kitchen. The canes got me to the car so I could drive my daughter. I came home, crawled back up the stairs and slept the rest of the day. Felt betterish. Pain is still really bad today, but just a notch down. I am beginning to suspect that all this fibromyalgia stuff is related to adrenals and hormone function. I mean I think I have known that for a while...I asked my doc about my adrenal function around a year ago I think (he dismissed it)...but now I am pretty much convinced this has something to do with it.

So...perhaps I just need some sort of concrete hope to hang onto, or perhaps I am correct about my own body. We'll see. I don't think this diet and herbal supplements and vitamins will hurt me. Most of it I do anyway, just not consistently enough. So it gives me a project. I am unwilling to accept that I may have to live the rest of my life in this level of pain and fatigue. I simply will not accept it. So there.

Thanks for the Qs @shimmerz

1. Are you on new meds or off of old ones?
2. You journal a ton. Can you see when this started?
3. Have you anything to ground to? A routine? A friendship? Even just for a few moments a day?
4. You said that you were okay for two hours after sleeping. Was there something that antagonized you around the two hour mark that you can think of?
5. Are you expecting too much from yourself right now?

I'm off all meds now (except vitamins of various sorts), for better or worse. Prozac will be completely out of my system by beginning of December (takes 6-8 weeks). So that could be part of what's going on because I was on it for 7 months. The real intensity of all this stuff started around the time Yoda started doing direct access in my sessions. So, could be that too. I will have to dig back through the journals maybe. Yes I definitely need something to ground to. Currently, it seems to be my bed and my dog. What antagonizes me/sends me into physical or mental trouble? EVERYTHING. Just being up and interacting with people, or being up and moving. I have extremely limited ability to function comfortably for more than about an hour or so after resting for lots of hours...unless some part hijacks me. Then I can go way longer, until the body crashes out.

So...yes, some parts are expecting far too much from the body. Other parts are working on letting me rest and simplify and play a little. So, moment-to-moment it is one or the other in charge. I am working on grounding/focusing on getting my SELF to be heard by these particles (my new word for "parts"...I like it better). My SELF can hear most of them now; they just are glibly unaware of my SELF responses. How crazy is that?! Pretty crazy.

 

[Deleted member 12723]

No,not crazy at all. I sure hope that you are able to get your answers to guide you as you continue to make that important decisions. I wish your bedroom was downstairs because I am concerned that eventually you will have a fall.

I love your spirit which continues to push forwards and eventually you will suceed with all of this practice. You are in my heart and prayers and are very much a inspiration to me.

 

[Hope4Now]

So...a bit better today all around. Pain averaged around a 5 (which is fairly common) and only spiked high a few times. Very clear-headed. Even got through my gyn annual without too much hideousness (although my bp went very low and I soaked the paper sheet with my cold sweat...but I managed to carry on a conversation with the doc...AND get a recommendation for an endocrinologist.)

Anyway, I finally figured out tonight when I started to clean up the kitchen and then crashed, that I was in some kind of super-manager part today. The reason I felt so decent and energized except for the pain was that I felt like I used to feel when I was "functional." I think I may have been in this part much of last night too. Which might account for how disconnected I felt from my therapist, Yoda Man. And why my rest and meditation felt kind of stupid today. Etc. And why I came pretty close to calling my work people and saying I was ready to come back to work. HA! As if.

It is so weird to not realize I am in some part until afterward and then I can see it. When I'm in it...well, that's what I am. Who I am. I feel that I am very in the moment, and everything else is just false or a bit dreamish, if it is even in my consciousness at all. It is so strange and unsettling and a bit scary sometimes. But I am starting to get used to it. The real trick is to learn how to feel it coming on. I'm working on that one.

Some of these parts do get me through a lot of difficulty though. For that I am grateful.

 

[Hope4Now]

The real trick is to learn how to feel it coming on. I'm working on that one.

Oh, and to figure out when I'm in it and how to get out of it.

Clearly, there is something going on that parts of me do NOT want to deal with.

Today I spent most of the day on the forum and facebook. And then like two hours designing a self-assessment form for me to fill out three times a day to see if I can find any kind of pattern in what the hell is happening to me. Thinking maybe that might snap me back into some semblance of SELF if I'm not in it. We'll see.

I did no art. I did no creative work. I paid no bills. I did not go to see my mother (almost three weeks now, I think. Maybe two). I did not rest. I did not speak to anybody. I did not return the phone calls I was supposed to return. Basically, I did NOTHING I had planned to do except drop my daughter off at school. She is serving dinner at a shelter right now, and I will go to pick her up in about 15 minutes.

So what am I avoiding? Obviously something. Perhaps why there seem to be more nightmares. And other odd things going on like not being able to walk, or getting literally stuck in place...not like a full-body freeze...just an inability to make my body move the way I intend it to.

My husband wants me to create a one-page overview of what is going on with me. He said he would help. He says when I start to talk about it, I meander all over the place and in time and that nobody will understand what I am talking about...like a doctor, or even him. Here is what he wants:
1. official diagnoses
2. symptoms
3. strategies and frequency
4. medications/supplements and dosages
5. people who are involved in my support/know something of what is going on & their contact information

He says this will help him. It's actually a good challenge. Nothing about the history. Nothing about the future. Just now. What is happening and what I'm doing about it. Very objective and cold. I'm not good at that. So perhaps that is what I will do after I pick up my daughter.

 

[Deleted member 12723]

I wish you the very best on your new challenge on a fact finding mission. I am so happy that your husband is so supportive of you. Many hugs.

 

[Hope4Now]

Last night, I wrote the one-pager. My husband was thrilled. And it was actually a good challenge for me--especially to link strategies to symptoms. I will share it with Yoda as well. I got REALLY scrambled last night. I didn't even want to go back and read what I wrote in my journal, but I could not help but notice the mess in it. WOW. WTF. I remember writing and feeling scrambled. I have no recollection of what I wrote. I don't think I will go back and read it today though.

It has been a rough day. I went for what I thought was a regular eye exam to get new glasses. This time with an opthamologist instead of the optometrist I've been seeing for 25 years. I seem to be in this mode of finding new healthcare providers for myself. I'm in the market for a new dentist as well. Anyway, the eye doc I saw today is a social friend. Very nice man from India. And he opened up some really disturbing discussion of what he was seeing in my eyes. It's freaking me out. Nothing for sure yet. I go for another test next week, and he says that will give us much more information. This is NOT what I want. AND it comes on top of a mammography report that indicates that because of the density of my tissue, there is basically no way for them to assess whether I have breast cancer or not. So I asked my gyn if I could have breast reduction (which I'd like anyway) and he said it wouldn't make any difference. Maybe I should just get a double mastectomy. Shit. I do get scared about this stuff. And I have no medical history. I suppose I could go get the genetic test. Blah!

I am hurting and tired today. I went to my second DBT group. Nice people. Nice therapist. I'm not sure I'm going to get what I need from it though because it is way more basic on skills than where I am in my life, especially after having done a 2-week residential DBT program. But I am committing to give it a chance, because often when I stay open to possibility, I learn things and experience things that help me grow in ways I never could have imagined.

At least I have a new glasses prescription. I HATE my graduated lenses, and I HATE my current glasses. I can't wait to get new ones. So, there's that.

And my husband is cooking fresh fish, and kale, and wild rice, and I am very hungry because I never made time to eat today. Which, duh, may relate to my headache and exhaustion.

So...now I have to go tell him about the scary things the eye doctor said today. I hate this.

 

[Hope4Now]

I think maybe I am afraid to go to sleep. It is 12:36 AM. I am exhausted, but kind of hyper at the same time. On some websites of "symptoms" it's called "wired and tired" or something like that.

I am exhausted by nightmares. And my handy little FITBIT tells me that I average around 25 times awake/restless and around 3 hours of actual sleep on average. No wonder I'm always tired. Writing this has just reminded me that I ought to fill out the fancy self-assessment sheet I created the day before yesterday. Am supposed to fill it out 3 times a day. Whoops. I did it once the first day. Once yesterday. I cannot seem to act upon my own intentions in any consistent way. Perhaps part of my problem. Perhaps one of the hurdles to healing. I used to be much more focused. It is very, very difficult to do things for myself.

Today, I stopped at a big bookstore on my way home from group. The intent was to see if they had the first edition of my favorite poet's new book, and then grab some food because I had not eaten anything but a handful of almonds and raw pumpkin seeds. I didn't accomplish either. Ended up picking up some fun stuff for Christmas. There's a part of me that fears I will not be around for Christmas this year. Very disturbing. So getting presents in order now. Probably yet another avoidance tactic that my parts are so good at. Then, suddenly, I realized I was already late to pick up my daughter. So food and drink had to wait. Sigh. Not good.

What is going on with me? I just don't know. I told my husband about the bad news from the eye doc. He was sympathetic and supportive, yet basically unable to even fathom what this might mean if the tests show it's true. I won't know for another week or two. Glaucoma? Multiple Sclerosis. Argh. The first utterly freaks me out as my sight is my most valued of senses. The second freaks me out because although it has been on the peripheral radar for 15 years or so, I'd basically figured it couldn't possibly be true because then the MRI showed nothing. Freaked because my sister-in-law has MS and is one of the unfortunate few whose cognitive abilities have been profoundly diminished as a result. Very scary. Far scarier than fibromyalgia, or PTSD, or even DID or OSDD.

I am aiming to keep up the energy to sort out what is physical versus psychogenic as far as my health goes. Have the name of an endocrinologist who I will call tomorrow. Visual tests next week, I hope. I would like clear answers as to what the f is going on with me, yet I fear those answers as well. Isn't developmental trauma enough?

So, I am going to make myself go to bed. Hoping against hope that my parts will give me a break from the nightly nightmares, and that my daughter will not come screaming into our bedroom with her own nightmares at 4 AM as she did last night and on other nights. I just don't have quite enough energy to deal with all of this.

I told my group today that any single one of these stressors in my life, from dying mother to traumatized daughter, from elderly relatives with massive physical and mental health issues, to our financial ruin, from my own flashbacks and pain to my worries about my husband whose anxiety is driving him into the ground...any of these alone would be enough to overflow the stress cup. But all of them together? Just too f*cking much. How much distress can one person tolerate? That is the question I keep asking in my journal. Clearly, quite a lot, because I am still here. And I am still finding things to be grateful for.

Today, in traffic on the way back from the city, I reveled in the colors on the trees. The ancient copper beech in the town square, the scores of sugar maples in their scarlet finery, the gray-hued clouds speeding across the sky. My daughter's smile and hug as she climbed into the car. The weight of my 50 pound lap dog draped over me in the chair as she snored in sleepy content. The thought of my son at his college's jazz festival, my husband's beautiful hands. The return of forum friends to the forum. The deep and resonant base of my new djembe. The deliciousness of our dinner of wild salmon and fresh kale and my favorite bread from our local bakery. And so much more. I danced in the kitchen to Madonna tonight. I didn't even realize we had Madonna on our i-thingy, but my husband was playing it. Most of what we listen to is not dance-able. Dancing made me happy, even if I couldn't do my usual moves.

There is so much in my life for which I am profoundly grateful. I am not prepared to be ill. I suppose this is why I am fighting it so hard. But perhaps I need continued practice in the concept I find so appealing: radical acceptance. That is, openly and compassionately accepting what IS. In the NOW. Feeling it. Knowing that being here NOW is really, truly, all that counts, even if the NOW is wildly painful or upsetting. It is a tough practice. Which, I suppose, is why it's called "radical." I've always been a radical in so many ways. Now I need to practice this bit of it. The bit that is not a radical for CHANGE, but is radical in that it does not work to CHANGE...just to experience. And the desired change will come from the willingness and openness to experience.

I get this. My SELF gets it totally. My parts just aren't yet on board. But I managed to distract one of the really destructive firefighters tonight. Thought I wouldn't be able to. But I did. The urges passed. This may not have happened a few months ago...or even a few weeks ago. But it did tonight. I recognized what feelings were happening. And I began my usual response to those feelings. And then...my SELF rallied and talked with the part...and so on. And here I sit, aiming for bed, and with fully intact arms and legs despite the overwhelm. So there's some progress.

Writing this has helped. I think I am ready to go to bed, finally. I am looking forward to getting my real journal back from Yoda tomorrow. And to seeing him. I hope I can get myself in a more open place in which I can feel connected to him. I need that. I really need that right now. I'd like to get out of this safety-maintenance mode, and into that more vulnerable place I have to be for the healing to take place.

 

[shimmerz]

I just love you. That is all.

 

[Hope4Now]

Thanks @shimmerz. I needed that. I'm sitting at my mothers because they called me saying she is transitioning. Have been here for two hours while she sleeps. My husband is here with me which is good. I've been freaking out (parts have) since the call came in. Am calmer now. Hospice nurse is here and giving her more morphine. We are going to go home. Very tired.

 

[sun seeker]

(((Hope))) Sorry I can't be articulate right now. Thinking of you and sending you lots of love.