Strange Star

[Deleted member 12723]

I am so glad that in spite of everything, you managed to be brave and go out and have some fun. I can relate to being down due to my own unresolved issues but I do not have the health problems you have and I think in time you will figure out a budget of your limitations and find a new normal since life seems to be in constant changes.

I am so happy that you have the scooter now to help you to do more things than you could before.Hugs.

 

[Hope4Now]

I am determined to heal myself, dammit. My mom left me a little bit of money. Enough to pay off one of our major debts. And enough that I can spend some on healing myself. Because the damned insurance doesn't cover much (except my psychotherapy, thankfully).

• I have my totally cool mobility scooter (think razor scooter on steroids). Now I can do some fun things without so much pain!
• I set up my bounce back fitness chair today. Now I can exercise without pain.
• I have my 20 pound weighted blanket. Now I can get the ersatz "touch" I need to help me ground better. It doesn't totally solve the issue, but it helps quite a bit.
• I bought a stool for the shower. Now I can shower without pain!
• I have sheepskin boots for my feet and a sherpa lined robe for my body and fleece mittens for my hands. Now I can fend off the Reynaud's symptoms without practically climbing into the fireplace.
• I have a heated throw! Now I can meditate without getting so cold!
• I have a series of Tara Brach guided meditations that I really like!
• I have a fabulous psychotherapist.
• I like my group therapist.
• I like the new pain psychologist with whom I will met for 6-8 sessions.

The only thing really missing right now is finding a physician who understands mind-body medicine, noise-canceling headphones, a handicapped parking pass, and a handicap public transportation pass. But I'm sure I will think of some more things.

It has finally dawned on me that at this point, I actually know more than most of the people who are treating me. I suppose I have known for a while what i need to be doing...but I just couldn't "give in" and allow myself to do some of these things. Just kept thinking it would get better if I could just push through. Well, I can't. Things are getting worse, not better. And I have realized that if I don't start taking my issues seriously, my body will just come up with some new and hideous way to make me listen to it.

Although last week was pretty tough with realizations about the reality of my situation (VERY roller-coastery. VERY "dark night of the soul" stuff), the real kicker came on Sunday night when some part "hijacked" me on my way home from my writing group meeting. Instead of driving home at 10 PM, I ended up at the beach where I used to walk my dog. Not a particularly good place to be alone at night. I was pretty dissociated. Finally came out of it and got myself home by 11:30. I have not told my therapist about it, but I did tell my husband. Then yesterday I had a complete crash--physical, mental, emotional.

I just can't seem to manage to put together all the healing pieces I need to do into a workable program. Yoda could help me with this (Jedi training, LOL) but then we wouldn't have time for actual therapy. So that's kind of a problem. The new pain psychologist (pain lady) is supposed to help me learn how to pace myself better so I don't get caught in this push-crash cycle that has pretty much dominated my life.

There is so much going on in my head and my body. Some good, some miserable. I am practicing radical acceptance, radical compassion, radical resting, etc. Today, I took three long naps. It does help. I don't want to live like this, but it does help me feel better. Maybe it won't always be like this. I do know I have learned that my parts tend to hijack me more when I am tired or overwhelmed.

Oh well, so much for the babbling. Time (past time...way past time) to make dinner.

 

[Deleted member 12723]

Good for you for meeting so many of your needs on wants and being serious about your overall self.

 

[Hope4Now]

Feeling quite sad tonight. Lots of reasons, but mostly was going to the big formal Christmas dance in my town and just sitting on the bench and then on the balcony watching all my friends and others dance. I love to dance. Sigh.

 

[Deleted member 12723]

Baring the discomfort of losing something I love, due to my own limitations is an adjustment to make. You are such a great adventurer and I offer you hugs.

 

[Pietro]

It has finally dawned on me that at this point, I actually know more than most of the people who are treating me.

I've had this happen as well, before, primarily with the endocrinology stuff, but also with stuff related to Asperger's for my kids. It actually sucks when this happens -- you're expecting that there's someone out there who's an expert with solutions, only to find-out that there isn't, and that you have to school others. :/ Very disconcerting.

And enough that I can spend some on healing myself.

This is a great list!

Yoda could help me with this (Jedi training, LOL) but then we wouldn't have time for actual therapy.

There is a perspective that says that it's important to learn how to manage your issues at the same time, or even before, you heal from them. Yes, it slows things down, but you potentially become less subject to meltdowns. Maybe it's worth taking some time with Yoda to do this? Maybe you'll get a kick-ass light-saber out of it! (Requisite Star Wars joke ;) )

 

[Hope4Now]

Today was mostly awesome. Almost like old times. Got up early and worked on the making of gifts (all handmade this year). Went to our UU church for Christmas pageant day. Our pageant is like none other...written by a prof. comedian and performed by hammy and talented kids, it is an hysterically funny and quasi-political take on the old story. My daughter, who has played every role from sheep to Mary to narrator over the years is now going second rounds and was Melchior, one of the magi today. My son, at 19, who also played every role over the years, has truly aged out. Sad, but right. Saw lots of friends at church. Choir sang some rockin' good songs--everything from traditional French carol to African-American spirituals. Then at the fellowship hour, some really nice connections with people I have missed seeing.

Then came home and met up with some friends who were in town for the artisans fair. Had a great time checking out the hundreds of talented artisans and bought a few really fun things. Then went to the Irish pub to hear our friends play. Then came home and made some more presents until another friend came for dinner bearing her gift to us of a take-out dinner from our local and fabulous Indian restaurant. Then other friends came back and joined us for a bit. In between all this, daughter was playing piano and singing, and son returned from his job asst. producing for a show in Boston. He recited the annual poem "The Shortest Day" for all of us, in honor of solstice tomorrow. Made me really tear up. Always does, but having my son recite it from memory was especially great. Plus, he got the author to sign my copy of it! Met her tonight. (He meets so many cool people through this show he's been involved with for years...even Yo Yo Ma!).

I am totally exhausted and I do know that I can't keep up this kind of pace. Way too much. But wow was it fun. Having the scooter allowed me to do much more than I usually could have would have.

And all of this helped drive away the horror that has been haunting me from the worst nightmare I've had for a very long time. Happened on Friday night. Still with me, but fading, finally. I hope I never ever have that one again.

So...in the extreme roller-coastery way that things have been going lately, today was one of the highs. Yippee. Most all of the day except a few moments. I can't quite believe it! I could use more of these. Yoda promises that if I keep doing the work, I'll get more times like this. I hope so. I really do. But one moment at a time. I know how much ugly is still stuck inside and I need to deal with it. I have not dealt with any of my mother stuff. I know it is lurking because one of the friends who came to visit is, among other talents, a stone cutter and he went with my husband to look at my parents' grave site and they returned and talked to me a little about a stone, and I could not talk about it.

Anyway, I am extremely grateful to have had a lovely day filled with caring and connected friends, creative inspiration, and the real joy of the holidays.

And now I am going to sleep with the intention of having all this life-sustaining and positive energy spill over into my REM sleep so that maybe, just maybe, I will be blessed with a good dream. I haven't had a good dream for several years! I think it's time.

 

[Hope4Now]

It occurred to me when I was at the artisans fair yesterday that I might be able to figure out a way to make some income by actually selling things I make. I could not believe how many things I make and give as gifts were being sold at that fair for a pretty significant amount of money. Seriously. I could not believe it! And people were buying the stuff! I am fairly certain that I could never make a living with my art (the photography and sculpture and the new sorts of painting I am toying with), or with my writing which is so dependent upon fining a publisher who will accept it AND market it. But this? Seriously? I mean, I knit, I make jewelry, I make body and facial scrubs, I make greeting cards and note cards, I make framed mirrors...I make all sorts of things. Right now I'm working on making throws from recycled fabrics (but am hoping to get a sewing machine for christmas which sure would speed the process!) Yesterday, someone was selling scarves made from recycled fabrics...for $32 each! Yikes.

I mean I know that people do this. And they eek out a living. But I had never ever made the connection that I (yes me) make many of the same things and could actually sell them. I have no idea why this never occurred to me. Maybe because I used to have a job and no time to do all this making of things.

Hmmm. Will have to ponder this as I finish up the Christmas presents.

I was just accepted into a therapeutic program--10 day "retreat" to which I will go in February. I am really, really excited about it. The team of therapists are all trained in programs that I know about but cannot find on this coast. So yay.

Things are looking up all around. I think my SELF is getting stronger. I think I am learning how to do this "radical acceptance" thing.

 

[Deleted member 12723]

I am so very happy for you. You are so full of fun and fun things, great friends, and beautiful family. I think you are such a awesome person. Hugs.

 

[Hope4Now]

And...surprise surprise, I crashed last night and it lasted most of today. Going to Christmas Revels and singing helped a lot though.

And, trying to maneuver around a busy city in my scooter provided a RUDE awakening: many people are completely oblivious of people in chairs. (Although many are helpful too.) But the big one is that even if stores have accessible entries, it does not mean that their setups on the inside are even close to accessible. I basically spent most of the shopping time this afternoon parked in the front of stores because I couldn't get through the aisles. I have always been sympathetic to people who travel on wheels, but I have a whole new understanding of the challenges. And I CAN walk if I have to. I can't imagine how difficult it must be, and how frustrating for people who cannot walk.

I am feeling a bit better tonight than I have been, but some darkness has overtaken me and I can't shake it. Maybe it has to do with solstice. Maybe I need more fires and singing to drive the dark away.

Welcome Yule and Happy Solstice to all who celebrate.

The show we went to tonight was partly written by Susan Cooper, the author of this wonderful poem that we read each year as a family and together with the many hundreds of people who attend Christmas Revels (A celebration of solstice) each year:
Link Removed

 

[Hope4Now]

@gizmo thank you for your abundant positiveness.

 

[Deleted member 12723]

Hope I am just calling them as I see them, but you are most welcome. Hugs.