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Please don’t set your goals based on what other people expect you to achieve. Find out what would feel like an achievement to you and work towards that at your own pace.

If your achievement doesn’t sound like a big deal to somebody else that is absolutely okay!

It’s witchcraft????????? Like I would be burned at the stake if I lived in ye olde days knowing that information?????

It’s best to have someone do this for you while you stand up and relax your muscles as best you can, but if you’re alone, a tennis ball and a flat surface will probably work. Alternatively you can lie on the edge of a bed at the pressure point. (But no really do try to find someone to do it for you)

Find the area in your spine between either the first, second, third, or fourth vertebrae. It should be sore and uncomfortable to press down on, so look for the one that’s most painful, and press down with as much pressure as you can on that area for 30 seconds.

Realize that 80% of your pain has magically disappeared and keep the info secret if you live in a small puritan town, lest you be tried for witchcraft.

This is good for tension migranes and normal migraines, but actually pretty useless for sinus migraines. It’ll help for a hot second, but quickly come back. (These are usually the migraines behind your eyes, in your ears, and behind your forehead. Sometimes it can feel like jaw pain or TMJ) for sinus migraines, behind the ear in a divot. Press down firmly and pull towards your collarbone. That’ll drain your sinuses. Also, pressing around the eye socket on the cheekbones help. There is also a little triangle up away from the eye in the eyebrow bone. Press and hold pretty hard and that’ll relieve that behind the forehead pain. Also, ear pulling is great to help move sinuses around.

Don’t forget the temples too! Press firmly and hold. Open and close your jaw while holding your temples. It’ll feel weird, but it’ll help with jaw pain. It’ll work a similar way if you hold the jaw joint under your cheekbone.

If people know there is something wrong with their bodies, and doctors continuously blow them off, if those people don’t look into it, or have someone help them look into it, they can very easily end up dead.

So a family at a small church had a kid on the autism spectrum (like me!). This kid, like many on the spectrum, was very routined and would get very upset by a loss of said routine. The church this family went to was very accommodating of this family; they set aside a whole seating area so that the kid could sit in the service and have space to not feel overwhelmed by the crowd of people in the building (meanwhile I’m listening to this while sitting in the empty of pews in the back for that exact same reason lol) and were very respectful of this kid’s spacial and sensory sensitivities. Which is super nice, but get this:

One day, the family was running late to church. They knew that missing the first fifteen minutes of the service would freak out their routine-oriented son, but they decided to chance it because the routine would potentially be thrown off even more if they didn’t go to church at all. So they go in through the back, trying to be really quiet, and the parents could see the panic blooming in their child’s expression almost the second they walked in. At that moment, the pastor saw the family walk in… stopped the service… and started over.

I kid you not, I started crying. I’m standing in the atrium after the service over an hour after he told the story and I’m crying again just thinking about it. That someone would go so far out of their way to ensure that a place designed to be a safe and comfortable place for everyone actually was a safe and comfortable place for EVERYONE… as someone on the spectrum I’ve never experienced this level of unbegrudging understanding and accommodation. Even the most respectful and aware people in my life still make me feel like I’m being an inconvenience.

I don’t care if you’ve “been worse”

Your body is tired of this.

Another would be listening to audiobooks, or podcasts, or tedtalks, perhaps. 

That word DOES NOT MEAN you’re making it up. It doesn’t mean you’re imagining the symptom. What it means is that the symptom ISN’T DIRECTLY CAUSED BY ANY OF THE THINGS THAT WOULD NORMALLY CAUSE IT.

I fought to get a PCOS diagnosis for 2 and a half years. For the ENTIRE time I was fighting, I was dealing with 3 cysts that were not going away by themselves and eventually required surgery to remove. At one point close to the end of the battle, I suddenly went blind. I was visiting my parents and was standing on the veranda looking out over the tree we had planted in memory of my dog and suddenly I got one of the shooting pains that I was quite frankly used to at that point and my vision started to go dark. It was like the sun was setting while being completely hidden behind storm clouds but it was 2pm in the middle of Summer on a clear day. Within about 30 seconds I couldn’t see ANYTHING. I was 27 years old and I was screaming for my mother.

My mum raced me to her doctor (he was a 15 minute drive away as opposed to 45 minutes to the nearest hospital) and he quickly worked out that there was nothing wrong with my eyes and what had happened was totally unrelated to them. Then he said it was psychosomatic and I freaked out, yelling that I was NOT making this up and I definitely wasn’t imagining it. Very quickly he calmed me down and said he believed me and I had misunderstood. He explained that whatever was going on with my abdominal pains (he suggested PCOS which I hadn’t even heard of at that point) had been ignored for so long that my body was starting to do things other than the normal pain response to try to draw my attention to the problem. My sight going was my body basically jumping around in front of me going “HEY ARE YOU EVEN LISTENING TO ME HELLLOOOOOOO??????”

He gave me some prescription strength painkillers and my sight started to come back as soon as they started to kick in. About 45 minutes after it started I could see well enough to walk around without help and within a day and a half I was back to normal. On top of that I finally had a scan booked to figure out what the hell was causing all the pain.

It’s really fucking hard to admit that I need help. But I’m having mobility issues & severe pain. For my dignity, I need to be able to bath myself for as long as possible. Right now, I’m struggling to do that. I made a #disability wish list and the most important on there is a shower chair, wall grip, and hand held shower head. These are things that will help me be able to bath myself. I know these things are expensive. I don’t expect anyone to outright purchase anything. But even a $5 Amazon gift card or just $5 to my PayPal or $2 or $1 is helpful.

I did put other stuff on there, because it’s fun to dream. That maybe like a millionaire is like going through wish lists and will make it rain. 😂

But most important is the chair, the grip and the handheld shower head. Any and all donations/Amazon gift cards will go towards that. Thank you to anyone who read this, bless you and thank you to anyone who wishes they could or does help. My pride is a little beaten, but I’m thankful this is even a possible option.

🖤

Disability Wish List:

https://www.amazon.com/gp/registry/wishlist/3M408EBGBA9BY

PayPal:

[email protected]

“Oh yeah, every time that dad forgets mom is dead, we head to the cemetery so he can see her gravestone.”

WHAT. I can’t tell you how many times I’ve heard some version of this awful story. Stop taking people with dementia to the cemetery. Seriously. I cringe every single time someone tells me about their “plan” to remind a loved one that their loved one is dead.

I also hear this a lot: “I keep reminding mom that her sister is dead, and sometimes she recalls it once I’ve said it.” That’s still not a good thing. Why are we trying to force people to remember that their loved ones have passed away?

If your loved one with dementia has lost track of their timeline, and forgotten that a loved one is dead, don’t remind them. What’s the point of reintroducing that kind of pain? Here’s the thing: they will forget again, and they will ask again. You’re never, ever, ever, going to “convince” them of something permanently. 

Instead, do this:

“Dad, where do you think mom is?”

When he tells you the answer, repeat that answer to him and assert that it sounds correct. For example, if he says, “I think mom is at work,” say, “Yes, that sounds right, I think she must be at work.” If he says, “I think she passed away,” say, “Yes, she passed away.” 

So finally one day Alice did the whole “JANET IS HERE” and this nurse rather nastily went “Janet is dead” and before it could go any further I said “excuse me??? How dare you say something so horrible to my sister?”

The nurse was pissed, because I was “feeding Alice’s delusions.” Alice didn’t have delusions. Alice had Alzheimer’s.

But I made sure it went into Alice’s chart that she responded positively to being allowed to believe I was Janet. And from that point forward, only my specific patient referred to me as “Nina” in front of Alice—everyone else called me Janet, and when Alice said my name wasn’t Nina I just said “oh, it’s a nickname, that’s all.” It kept her calm and happy and not sobbing every time she saw me.

Always remembered that, always did it. Nothing worse than hearing someone with memory loss ask the same question over and over again only to be met with: “We already told you!”

Today I was talking to my professor about my ptsd and how it may affect class performance, because it’s a very participation-heavy class. The system that my professor came up with is kind of beautiful, so I want to share it with you guys.

She gave me some neon pink post-its, the kind that can be seen for miles because of how bright they are. If I’m having a flashback, dissociating, panic attack, etc., I can just put one of the post-its on my notebook, or somewhere in front of me on the desk. She’ll take that as a cue to not call on me and not expect me to participate. When I’m ready to engage in class again, I’ll just move the post-it out of sight.

Ok so I want to get back into this thing. Blogging, I suppose. I’m too exhausted to type so I might do a video type thing. Not sure. Anywho….