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Zaethe: Winter in the Summerlands


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Here's hoping bad days come in threes because today sucked.  Sleep came in little jolts of an hour or so, followed by an hour or so of just pain.  Friday can't come fast enough at this point.  Now it's 1am and I'm not tired in the slightest because my sleep got so royally screwed last night.  I got 3l of water squared away again, and honestly all moving today was moving with purpose, because I had to be so careful about everything I was doing.  Still do.  Even scratching an itch comes with too much pressure on my finger joints to the point that my fingertips feel like they're ready to snap off.  Had to put compression leggings on to keep my knees in place.  Those guys are starting to...not compress so good.  Which is a problem, because they're over 100 bucks a pair and I cannot afford to replace them.  No cleaning has been done today.  That's okay I'm not gonna beat myself up over it, though I am starting to think I maybe need to change my mindset a bit.  I have a habit of waking up in pain and just writing the whole day off.  I need to work more on figuring out what I can do, at later points in the day, and maybe doing that.  If I feel up to doing dishes at midnight then I should probably do those dishes.  As long as I differentiate between feeling motivated to do dishes and feeling capable of doing dishes.  Because right now as great as motivation is, it's so easy for me to overdo it, I just have to be careful until I know what's up.

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In our crappy new update:  my shoulder subluxed (partial dislocation, the joint and socket are still touching and can usually be relocated back in place without assistance ((this happens fairly regularly with my hip and jaw)) ) and getting it back in placed sounded an felt like crunching gravel.  It's also 3am and the tired is slowly starting to set in.  It's now Wednesday here.  On Friday I have an appointment at 9:10am at the hospital.  How on earth I'm going to manage that is still currently beyond me.

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2 hours ago, Zaethe said:

I have a habit of waking up in pain and just writing the whole day off.  I need to work more on figuring out what I can do, at later points in the day, and maybe doing that.  If I feel up to doing dishes at midnight then I should probably do those dishes.  As long as I differentiate between feeling motivated to do dishes and feeling capable of doing dishes.  Because right now as great as motivation is, it's so easy for me to overdo it, I just have to be careful until I know what's up.

That sounds like an important distinction. I hope with practice you are better able to make it and take care of yourself. 

 

I'm sorry that you are in so much pain and wish there was something I could do to help alleviate it.

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Sending healing vibes. ❤️

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I'm sorry things are rough at the moment, and I hope it's something that will calm down ASAP. What I will say is that this:

 

16 hours ago, Zaethe said:

I need to work more on figuring out what I can do, at later points in the day, and maybe doing that.  If I feel up to doing dishes at midnight then I should probably do those dishes.  As long as I differentiate between feeling motivated to do dishes and feeling capable of doing dishes.  Because right now as great as motivation is, it's so easy for me to overdo it, I just have to be careful until I know what's up.

 

is very good to hear. Doing what you can rather than what you feel you should be able to do is a difficult form of self-care, as you're right, motivation makes it easy to overdo when you really shouldn't.

 

Rest up as best you can, and I hope you're able to get to the hospital on Friday and that they can do something to help stop this from happening to you.

 

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Specialist appointment in just over 4 hours.  Managed to sort of get my sleep in check, and by that I mean I got 5 hours of sleep in two days and then went to bed at 7pm last night and woke up at 2am, just for this.  Been waiting for this appointment for three months.  Hoping to actually have some news today, or at the very least get whatever tests the specialist wants done so that I'll know something soon.

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Fingers crossed for you!

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Generalised Joint Hypermobility Spectrum Disorder.  I'm a couple of points short of the qualifiers for Ehlers Danlos, so my joints are pretty bleh.  But now, I have a diagnosis!  I know what's wrong with me!  I can make a plan and move forward know what the issues are and how to tackle them!  Ok, I confess, I'm not entirely sure how to tackle them all yet, but progress!

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Boo for what it turned out to be, but yay for answers and finally being able to deal with it!

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Just now, fleaball said:

Boo for what it turned out to be, but yay for answers and finally being able to deal with it!

 

Yeah it's sucky, even the doc had that look of "I can't really do much for you" on her face.  In between when she was bending my fingers back going "woah you're so bendy!"

 

But the answers part is awesome, I've been feeling like I'm in stasis for so long.  Now I feel like I can move forwards.  Carefully, but still.

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Yeah, not booing the answers at all. Does this condition affect your sleep too, or is that another issue? Or is the sleep just a side effect of the joint pain?

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11 minutes ago, fleaball said:

Yeah, not booing the answers at all. Does this condition affect your sleep too, or is that another issue? Or is the sleep just a side effect of the joint pain?

 

Sleep disorders in general are a co-morbidity of hypermobility disorders, they usually go hand in hand.  So yes and no.  The pain keeps me up, but the inability to fall asleep on good days is just my body being a dumbass.  She's written me a script for something that should help, but I can't afford to fill it just yet so gonna have to wait til the new year

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12 hours ago, Zaethe said:

But the answers part is awesome, I've been feeling like I'm in stasis for so long.  Now I feel like I can move forwards.  Carefully, but still.

I'm happy that you now have a much clearer understanding of what is going on and can start learning what to do to move forward. I'm sorry that the doc didn't feel like she could do much and that you can't fill the script until next month. 

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1 hour ago, Whisper said:

I'm happy that you now have a much clearer understanding of what is going on and can start learning what to do to move forward. I'm sorry that the doc didn't feel like she could do much and that you can't fill the script until next month. 

 

Unfortunately it's just facts, there's no cure for hypermobility issues.  The best they can do is figure out some pain relief for bad days and refer me for a couple of sessions of physiotherapy (can't get more than three a year unless I want to pay private fees I can't afford) which has questionable benefit.  Other than that it's just learning to live with it and hoping it doesn't get too much worse too fast.

 

But thanks :)  very happy to have some answers

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What better time to make an update than 3am cause your reflux woke you up and now you can't get back to sleep!

 

My water intake has been so much better.  In fairness, I think most of this success can be attributed to the fact it's been low 40s (104+ fahrenheit) for like the last couple of weeks pretty much.  But I'll take the win.

 

Knowing what the issue is with my joints actually really helps.  Now that I know it's connective tissue and not the bones themselves I'm a little less wary of putting strain on them, which means pushing myself to do a bit more.  It also really lays out the things I can't be doing.  Weightlifting is out completely, and so is yoga.  I'm none too surprised at either.  If I can figure out aqua therapy then that's a good show, some low intensity walking (YES!  I've missed walks!) I need to look into pilates on a recommendation from a friend whose husband has a similar condition.  I still have to be very careful, it's far too easy for me to pop a joint out of place which is not fun and not healthy, but I can do things and really move with some purpose.

 

The chronic fatigue is just here to stay, apparently.  There's nothing they can do about it except hope it lessens in severity.  Right now I'm sleeping anywhere for 7-9 hours a night, and then needing a 4 hour nap as well, minimum.

 

Off to my dad's when a reasonable morning (and some more sleep) time arrives, gonna do some laundry, take a nap, stay for dinner, the usual.  

 

 

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I'm glad you've got some answers, and I'm glad it's helping you move forward. Even if those answers are, like you say, just facts and not a cure, it does make a real difference just knowing what's going on with your body. And here's hoping that chronic fatigue does lessen in severity for you.

 

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Spent the day at dad's place, miracles do happen, for once he's actually acknowledging a medical condition and not acting like I'm making excuses for shit.  Typical narcissist style, he naturally knew all along that there was some issue there, of course.      But I'm not looking a gift horse in the mouth on this one.

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I was just reading through. I'm so sorry you're in pain and exhausted. But it's great the specialists came up with a diagnosis. Swimming and walking sound really useful. Hopefully they'll boost your energy a little and maybe strengthen the muscles to support the joints? 

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7 hours ago, iatetheyeti said:

I'm glad you've got some answers, and I'm glad it's helping you move forward. Even if those answers are, like you say, just facts and not a cure, it does make a real difference just knowing what's going on with your body. And here's hoping that chronic fatigue does lessen in severity for you.

 

 

I'm definitely hoping so, it's a real screwy thing wherein I'm up until stupid o'clock because I can't find enough tiredness to push through the pain, and then suddenly I'm so exhausted I sleep 11 hours throughout the day in small bursts of 2-5 hours.

 

2 hours ago, Harriet said:

I was just reading through. I'm so sorry you're in pain and exhausted. But it's great the specialists came up with a diagnosis. Swimming and walking sound really useful. Hopefully they'll boost your energy a little and maybe strengthen the muscles to support the joints? 

 

That's the hope.  Swimming has it's own issues attached to it, but the walking I can definitely do.  Just gotta do what I can and work on the rest later.

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I just spoke to a friend of mine, expressing frustration over finger splints.  So I discovered these things called ring finger splints.  They look like this:

 

2009_11_16_16_02_49__13_NC16141_LG.jpg

 

There are a few different types but essentially, they support the joint and keep it stable, stop it from hyperextending so much.  

 

This is HUGE, because my hands have gotten really bad.  Typing right now is a "pause to breathe" exercise, because pressing the keys hurts so much.  So I looked into them.  The metal ones?  $90+ a ring.  Polyplastic?  $25+ a ring.  And I need at least 8.  No way can I afford that.

 

So I get my vent out and my friend goes "...you know I have a 3d printer right?"

 

So we now have a project!  I get to try some new mobility aids, he gets to print something interesting and post about it online, it's a win win situation!  Plus I'll pay him for the work, but since it's like, 8cents a ring, it's hardly expensive.

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6 hours ago, Zaethe said:

So we now have a project!  I get to try some new mobility aids, he gets to print something interesting and post about it online, it's a win win situation!  Plus I'll pay him for the work, but since it's like, 8cents a ring, it's hardly expensive.

That is awesome! I really hope that you two can find a good design and that they help.

 

How is your dad handling the transition, or are you keeping it from him? Totally understand if you are; I've just been wondering since you said you were heading over and I know your mother wasn't supportive...

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3 hours ago, Whisper said:

That is awesome! I really hope that you two can find a good design and that they help.

 

How is your dad handling the transition, or are you keeping it from him? Totally understand if you are; I've just been wondering since you said you were heading over and I know your mother wasn't supportive...

 

I'm not planning to tell my dad until I start physical transition.  I'm not prepared to go through the "it's a phase" stuff again.

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17 minutes ago, Zaethe said:

 

T.I'm not planning to tell my dad until I start physical transition.  I'm not prepared to go through the "it's a phase" stuff again.

That is perfectly fair and reasonable. 

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On 12/14/2019 at 2:11 PM, Zaethe said:

This is HUGE, because my hands have gotten really bad.  Typing right now is a "pause to breathe" exercise, because pressing the keys hurts so much.  So I looked into them.  The metal ones?  $90+ a ring.  Polyplastic?  $25+ a ring.  And I need at least 8.  No way can I afford that.

 

So I get my vent out and my friend goes "...you know I have a 3d printer right?"

 

So we now have a project!  I get to try some new mobility aids, he gets to print something interesting and post about it online, it's a win win situation!  Plus I'll pay him for the work, but since it's like, 8cents a ring, it's hardly expensive.

 

Dude that's awesome that you get to test things and find something that works for you so inexpensively. Glad you finally got a diagnosis, and I'm also rooting that it can be managed and maybe lessened now. 

 

Also, sorry to hear you have to deal with narcissist parent(s?). It took me decades to realize that was my mom's issue and it wasn't me being f**ked up. Still hurts that I can't have a normal parent/child relationship and will never get the support needed, but at least I can stop internalizing it. Sounds like you've got a couple people you can turn to as a support network though. 100% agree with Whisper that it's reasonable not to open yourself to further pain with the family until you're ready.  /hugs

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4 hours ago, Manarelle said:

 

Dude that's awesome that you get to test things and find something that works for you so inexpensively. Glad you finally got a diagnosis, and I'm also rooting that it can be managed and maybe lessened now. 

 

Also, sorry to hear you have to deal with narcissist parent(s?). It took me decades to realize that was my mom's issue and it wasn't me being f**ked up. Still hurts that I can't have a normal parent/child relationship and will never get the support needed, but at least I can stop internalizing it. Sounds like you've got a couple people you can turn to as a support network though. 100% agree with Whisper that it's reasonable not to open yourself to further pain with the family until you're ready.  /hugs

 

There isn't a whole lot that can be done, but I'm gonna try everything I can and see what happens.

 

One narcissist, the other was just toxic, but she's passed now so it's not a present concern.  Though I do need to talk to my doc about a referral to a therapist for the metric fuckload of trauma that's left me with.  My dad and I didn't connect until I was 29, so we don't have that familial bond in a lot of ways, and he cares far too much about himself for me to ever take any kind of priority in his life unless it suits his purposes and directly benefits him.

 

*hug* thanks.  Honestly I'm probably gonna start pulling away from my dad a bit this coming year, because the narcissism is getting to be too much for me emotionally.  I already have enough baggage without adding to it.  So if he decides to cut me out of his life for it.  No major loss. 

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