Sage's Journal

[Armadillo]

 

That's a lot and I'm glad you have a friend to help you navigate the system. Stupid mammogram follow ups. Why don't they just start with the good ones in the first place? Grrr. Pet peeve sorry.

[CactusFlower]

Thank you, Armadillo. I just have to remind myself that stuff happens and it's all to help me stay healthy as I can be. It's also not uncommon to be a little harder to read when one is... Endowed, shall we say. HA HA

[CactusFlower]

not terribly sure how I feel today. Physically, a little more blah, but I made unhealthy eating choices the last couple days and am reminded by this heavy feeling why I'm changing that. Even if the apple pie ice cream tasted good in the moment, ha ha. Emotionally... A little all over the place.

The good parts are getting some empty containers out of the living room and into the garage with my bro's help, that cleaned up a whole corner of the living room. I constantly fight clutter and it's a slow process. But this made the room feel a lot bigger and brighter, which made me feel lighter.

A difficult, but good part, is accepting that I need help. I thought I'd dealt with this not long after developing Fibromyalgia. Learning to cope. Mitigation strategies, etc. Not well enough. It's turning out to be really hard to admit to myself that I am disabled. That's even hard to write. I will be purchasing various assistive devices for around the house and all, as I mentioned, but buying doohickeys doesn't feel the same as saying, I am disabled. I found myself justifying the things. Like, "The reacher grabber thingy is  normal, I'm only 5 feet tall and that's annoying." or "A bathtub bench is fine, I have bad knees." Like I have to have a legit reason other than just being disabled. It's a very strange and unpleasant feeling to work through.

A negative emotion, well, several, cropped up recently. It hit HARD. A memory came up of the male parental unit jokingly saying at one point to my saying I was his, "That doesn't mean I have to keep you." I'm not even totally sure how old I was when he said that, and other adults were laughing, but I completely re-experienced a blinding moment of devastation and the terror of being abandoned. It never happened, but that fear was utterly paralyzing and explains a lot about my being fawn/freeze in reaction style. It constantly amazes me to realize how many throw-away comments affected me beyond belief.

I've also noticed that the minor irritations in life are the same frequency, but seem to be increased in intensity. For example, the last 3 nights, someone in the neighborhood has been setting off fireworks. Where I live, they're illegal except on the 4th itself, and can only be up to a certain size in a residential area. Well, these are clearly too big, they have the "whumpf" when they go off. Our city has a method for reporting them, but cops never respond and nothing ever gets done. (another reason I want my earplugs to arrive soon in the mail) I have reported them in the same block all 3 nights and no one ever shows up. Why have the law if you clearly don't care about enforcing it? As you can see, the irritation spikes into aggravation much quicker than it used to. I don't know if it's because I feel safer expressing the anger I always repress or if it's dysregulation. I might have to talk to my therapist about this next session. The anger is scary to me.

[Jazzy]

Yeah, it's extremely difficult to admit to having a disability. You did a great job writing that out here though. I'm impressed that you wrote it out and didn't even delete it afterwards. Good job!

"That doesn't mean I have to keep you."

What the *?! What a horrible thing to say! It's also disgusting that the others were laughing! 

I can't even continue to write properly without taking a break, that is too upsetting. I hope you're feeling better soon.

<3 Jazzy

Update after a short break: Thank you for sharing that Sage. It is good you wrote that out.

I understand the anger being scary, it is for me too. It is important though. I hope you work through it in a healthy way, and that your therapist can help.

[Armadillo]

 

Sage.

I can't imagine how hard it is to come to grips with having disability and having to come to terms with the assistive equipment. I think it is a good sign though you are accepting it instead of fighting reality right now.

That was a cruel comment from MPU and cruel of others to laugh.

[CactusFlower]

TW: discussing abuse and self-harm















Seeing something in Laurel's journal made me think. I think we do have that since of minimizing/diminishing our pain in able to cope sometimes. (the "it wasn't that/so bad" concept) But honestly, I think we get messages from outside that reinforce the problem because of how things are portrayed. If the media talks about child abuse, we immediately think of physical abuse. That's what is sensationalized, paid attention to, whatever. If we hear about self-harm, we're trained to think about cutting and not other methods. I don't mean to trigger anyone, but it's built into our entertainment for a sitcom mom to say things like "kids elsewhere have it worse, so do X" We're taught early that it has to be serious and obvious before we deserve relief or help. Just like other invisible disabilities. These constant messages pile on top of whatever poop we were told and so we constantly downplay our own problems. I do it too. I have to constantly fight myself on coming to realize that not only am I disabled, I deserve whatever help there is to function and live decently, versus "Oh, I'm not that disabled" or the impostor syndrome muttering in my head that I'm taking up resources that a "truly" disabled person needs. My own sense of shame and guilt makes it hard. I've even caught myself doing it about my fibromyalgia. "Oh, I don't have it as bad as some people, I don't end up in the hospital for it." it's hard to tell myself that doesn't matter, it's still valid and disabling if I have to balance getting anything done versus the pain and exhaustion it might cause. Our society has made illness and disability into a flipping contest, and that's so frustrating. I hurt. I cannot function some days. I now have flashbacks and dysregulation and all kinds of stuff. I deserve some quality of life in whatever time I have left, dag nabbit. (I feel like Ned Flanders on here sometimes, LOL) I haven't had that experience yet, but I'm afraid I will someday, where I hear the stories about other people being told "you're not sick enough" for something. I'm just hoping if it happens, it's not on a bad pain day, because I have a tendency to lose my politeness filter when I feel that bad.

[rainydiary]

I appreciate you raising this as I think about it too.  I think it took me a long time to realize i had experienced abuse because it was primarily emotional, psychological, and neglect.  At times there were physical elements, but often it was the stuff that could  probably be explained away as "parenting." 

I have also asked myself the question if I have a disability.  Again, our society and world is pretty messed up with disability and how to support and acknowledge.  I would say I do have a disability because the way I function interferes with my daily life.  The way it interferes isn't obvious to others and I think that is what bugs me.  I can't really "prove" it other than to explain how I feel. 

I often wonder if my teachers ever suspected that something was going on with me.  I would guess not because I was a good student.  But I wonder.  I'm not sure what they could have done.  Maybe talked to me so I would have felt less alone. 

I am trying to focus on how my experience matters.  The way I think and feel matters.  What happened to me overwhelmed my ability to cope and feel safe and valued. 

[Armadillo]

Sage. You DO deserve peace and comfort and help. It is mind boggling the blind eye people turn and how little assistance is out there for mental health which hhheeeeyyyy we all know equals physical health too.

And yeah, Rainy. I wonder the same about teachers too. I have a lot to say about that topic. It hurts me so much to think what people saw and did nothing about. But it's for another post.

[CactusFlower]

Thank you all.
I honestly doubt teachers saw anything wrong back then. Not only did we present as a "normal" and successful enlisted Air Force family, I excelled in school. I actually liked studying and reading (well, everything but math) and turned to teachers as sources of sincere compliments. I quickly learned that even if Male Parental Unit was parading my intelligence as a reflection of his parenting rather than my own skill, other adults would be impressed. not having a lot of close friends due to moving every 1-2 years (and sometimes more often within the same assignment, like on base or off-base), I dissociated by being a voracious reader. It was encouraged not only for intelligence, but because I was quiet and out of the way while doing so. (in my interpretation now) I can lose hours in a good book. Being a fast reader too, meant more time spent at the library, always a calm quiet refuge.  When you grow up being a fast reader, you have to utilize the library if you can't afford to always be buying even used books. Back then, I could get a pretty good used book exchange rate, but those kinds of bookstores weren't often around. At least not overseas.

I did hate class time where we had to read out loud, though. Being a good reader, I also can read out loud very well. So other kids would accuse me of basically kissing up to the teacher by doing that so well. Or if we had to read something in silence, I'd always finish first. On the rare occasion a teacher would ask me questions to prove I'd read it and wasn't goofing off, I got them right, then the peer pressure for again being teacher's pet happened. UGH. I still love reading, though. Thank goodness it doesn't hurt to read. Looking back, I can totally see how I'd latch onto a favorite teacher because being "good" actually worked and got approval and praise. Probably explains why the majority of my friends in life were usually older than me and I didn't feel I had much in common with people my own age. Interesting. I'll have to tell my T about that.

Anyone else have the Reading comprehension things that were a large box of cards (maybe the size of a book cover) and you read something about the length of an article, maybe 2 pages, then answered the questions about what you read, then got the next card in the box? I tended to WHIP through those sets.

[CactusFlower]

I had sent a letter to my doctor to be put in my chart and read by anyone I interact with. It explains that I might dissociate and how that can look, that I'm not just "not paying attention" or "zoning out", etc. Got a reply this morning thanking me and assuring me it'll go in my chart. She seems decent so far.

I know healing/recovery- okay, you know, I'm not sure how much I like those terms. Sometimes I can be kind of literal in my meanings (ironic since I write poetry). I think those both imply there is an end to it, that there will come a point when one can say, "okay, I'm done, I'm fixed." But is that really the case? Our very brains were changed by what happened. Perhaps consistent improvement? But again, it's not linear progression. It is entirely possible that 15 years from now, I could have another memory surface or emotional flashback hit, no matter how good I am at that moment. I'm looking on thesaurus.com for synonyms and they don't totally work for me either.

Reformation - I can't reform it into what it once was. Reform into something new, maybe, but then it's not re-forming. Restoration. Again, not going back to what was before, obviously. Recuperating? Maybe, but has the implication of again getting to an end point and makes me think of Victorian women lounging about in pegnoirs, trying to get over the vapors, LOL.  Rehabilitation actually comes close, as the dictionary says it means a return to a state of good health. Not the same state. Of course, there's the social stigma of "rehab", but just don't use that short form maybe. Readjustment also isn't too bad. Hmmm. Went off on a tangent there, but something to think about.

Anyhow, I know it's not linear progress to an end goal. It just feels like the past couple weeks have been worse. The intrusive thoughts at bedtime are worse. I personified my Inner Critic, gave it a personality and a name and all, and it helps in general. But at the same time, when I'm lying in bed with the lights off and my brain decides that it's a good time to go "wouldn't it be horrific if someone threw you off the side of a boat?", I feel... They just get so outlandish, so unrealistic yet terrifying and violent sometimes, that I have to tell my Inner Critic out loud to stop doing that. Then I feel weird for doing that. Just... UGH. I'll probably talk to my T today about it. I also plan on getting something OTC to help me sleep this coming weekend. 4th of July is my least favorite due to the neighborhood buttheads who set off ones far too big for a residential area, and keep going with others until 2 or 3 am. Thank goodness my cats aren't bothered by it. I suppose that's something.

[rainydiary]

I appreciate you communicating your needs with your providers and am glad they seemed responsive. 

I also appreciate your questions and seeking of the words to describe your experiences.  It is so tough and I think about that a lot too.  Our ability to communicate is so cool while also so limiting at times. 

I appreciate your reflection on how this isn't linear.  I often want it to be and get upset when it isn't.  We are such complex beings and thus complex approaches and understanding are needed. 

[Not Alone]

Anyone else have the Reading comprehension things that were a large box of cards (maybe the size of a book cover) and you read something about the length of an article, maybe 2 pages, then answered the questions about what you read, then got the next card in the box? I tended to WHIP through those sets.

I remember those, but don't remember what they were called. I don't think that I was crazy about the little stories because I preferred to be lost in a novel.

I know healing/recovery- okay, you know, I'm not sure how much I like those terms. Sometimes I can be kind of literal in my meanings (ironic since I write poetry). I think those both imply there is an end to it, that there will come a point when one can say, "okay, I'm done, I'm fixed." But is that really the case? Our very brains were changed by what happened. Perhaps consistent improvement? But again, it's not linear progression. It is entirely possible that 15 years from now, I could have another memory surface or emotional flashback hit, no matter how good I am at that moment. I'm looking on thesaurus.com for synonyms and they don't totally work for me either.

Anyhow, I know it's not linear progress to an end goal.

I'm on board with you on this. I refer to it as my journey.

[Armadillo]

Ugh that whole teachers pet dynamic....that was very damned if you don't damned if you do! Poor cactus flower.

I don't know those cards! But then again I don't remember *. 

You make a lot of good points about the terminology for "recovery" gosh especially when there's no pretrauma point to recover! My T refers to it as "the path" or finding the middle path. Buddhists, lol. 😁 But, it kind of works.

[CactusFlower]

I'm kinda Buddhist/Pagan, so path or journey works for me!

Today was okay. Bro helped me get the large "donate" pile of stuff to Savers, so I have quite the bit of recovered real estate in the living room now. It feels nice. He also got his quarterly box of Bi-Pap supplies. They always send way too much and the wrong hose, and he's still working on a box 3 back from this one, so I'm helping him give it away on a Buy Nothing group. Some have expressed interest already. At least someone will be able to use them. Then we picked up dinner and brought it home. My state opens fully today, but I'm still wearing a mask until they get a handle on that variant in the USA. Especially since a study in England just released is calling fibromyalgia an autoimmune disorder now. Well, it's what one study found, and it's nowhere near doing anything to help, but hey. Better safe than sorry. I don't honestly expect them to totally figure it out and find a cure in my lifetime. Heck, the drugs on the market aren't even that useful. Lyrica? Only forks for about 60% of fibro patients.  Not good enough, IMHO.

I also (a couple days ago) ordered replacement cuffs for the forearm crutches I got from that same group. The coating was cracked, but apparently these are a really good brand, so those parts are available. They should be here maybe sat or tuesday, hopefully. I also have patterned duct tape to decorate them like I've seen a lot on the net. This should be quite amusing. one tape is all dark starry galaxy, and the other is pink with kitty cats. Not Hello Kitty, alas, but close. No one said they have to match. I also found the DMV (dept of motor vehicles for non-Americans) form online to get the disabled parking thing that hangs from a car mirror, so I'll need my doc to fill that out. Then that can be used in any car I'm in. Think of a large Wal-mart parking lot that's pretty full, which is often. Parking halfway out or further and I'm exhausted by the time I even get inside. UGH.

Feeling a bit blah lately. not sure why.  Probably a comedown from therapy yesterday where we discussed anger and dissociation, like swings on a pendulum.   Just... Meh.

[Armadillo]

I saw that study and had to laugh that it took mice getting sick for people to believe women. Grrr. 

But I am sorry you are and have been suffering to such a great extent with an invisible disease that is disabling. You're strong to be managing through this.

Your brother sounds very kind.