marleenfriends - Tumblr blog

[marleenfriends]

No one told me

Image description: “no one told me it wasn’t supposed to hurt” in black hand writing over water color background

I didn’t know. No one told me. I suspect I have post concussion syndrome. I have headaches everyday. Light hurts my eyes. I am always dizzzy. Vertigo is part of my normal life. I can’t fall asleep. I have spots in my vision, double vision. I struggle to read in a linear fashion. It’s always been like this. It is my normal.

I bumped my head as a baby crawling. I whacked it falling off a playground. I got hit in the face with a basketball and fell backwards. I fell of a horse head first into a steel support pillar. I fell off horses often. I can’t remember how many times I hit my head. I remember landing on my back, having the wind knocked out of me and having my head throb so bad I could see it as pulsing, blurry vision. I crashed my bike and hit the curb and broke a tooth, walking around dazed till I stumbled upon student health. I crashed my bike years later and told the ER that I thought I hit my head and broke my arm. They only looked at the arm. My dog slammed her head into mine and a week later I couldn’t handle the busy airport and needed a wheel chair. Im sure there are more. 

I always thought this was normal. People hit their heads. It hurts. They get over it. Right?

It’s not normal. Or so I’m being told. I’m told I hit my head a lot. And that my struggles are real. That is the hard part. The pain isn’t normal. It didn’t have to be like this.

I’m hurt that no one told me. I’m frustrated that others don’t deal with this, that it’s just me. I’m mad that I tried so hard for so long to be like them when I was disabled and just didn’t know it. I’m grieving my sense of self. My sense of the the world and my place in it. I’m grieving the loss of independence, even though it’s not being lost, just put into context.

I don’t know what happens now. Maybe find a dr to confirm. See if there is anything they can do? Change my habits to accommodate and reduce the pain I have endured for years. I guess? It feels like giving up. I know it’s not. But I’m scared to give up the picture in my head. I want this to be normal. I want the world to be simple again. It’s not. And I’m scared.

[marleenfriends]

This struck really close and I think captures many of my struggles with people lately. Unrelated to the current protests.

[marleenfriends]

Day 6: Management strategies. 

Im not that good at it right now. But its mostly about keeping a routine and paying attention.

My routines include 

POTS adapted cardio work outs everyday - improved balance -> fewer tweaked joints. 

Stregth Training to help stablize joints. 

Lots of water and salt. 

small meals, I also have alot of stuff I dont eat anymore, but idk if those issues are EDS related or what.

The rest is about paying attention and being honest with myself. I have a cane and KT tape and ring splints and braces and the like for when I need them, I am working to asses better when I need them. Its hard, because Im used to not thinking i had the option. I also try to keep track of symptoms so I can catch things before they get too bad. 

[marleenfriends]

Day 5: toolbox. Mine is still minimal. I have a hard time remembering that I can do anything about a flare. What I do have:

Ice packs

Flax heat pack

KT tape

Salt stick vitassium

Microwave meals

Cane

Massage stick

Audio books

Eye mask

Tylenol

PT equipment

Shower chair and wand

IV fluids at the dr

Video calls and Postmates

[marleenfriends]

Day 4: Flare ups. When it rains it pours. My spine is fairly unstable, so when I have a flair I get all kinds of pinched nerves. Leading to all kinda of pain. Bad headaches. I dont know what kind, I swear it feels like I get them all. This tend to get me to not be careful and i tweak a joint or two as well. My GI tract  acts up. Nausea, gass, pain, etc. But the worst for me is the pain all triggers flash backs. To being young and small and in this very pain, but being told I was lieing. If it getsd bad I struggle to do anything about it because I get stuck in that space of being told im making it up and to just... suck it up. 

That got sad fast. I guess that is why I wanted to do this though. This is my struggle. I am 30. I only go a dx this year. I only knew this wasnt normal, something everyone dealt with, just better than I was... a year ago? something like that. It has messed with my head and I am trying to undo that. To learn that this is real, im not making it up. But also, I can do something to help myself. I can make it less bad. And that other people will... or might at least, beleive me. Im an adult now and dont need to accept other people’s versions of my reality. 

And right now my reality kinda hurts. 

[marleenfriends]

Day 2:  oh boy. So my story as I see it started about 4 years ago. I was struggling with college classes. No because of the material, but because i was sick constantly. To spare you the details I was dx with IBS and then that was corrected to celiac when I changed medical providers 6 months later. 

After that I started asking more questions. I had thought most of my GI issues had been normal, so i was concered what else in my life that I was struggling with wasnt normal. Im sure I drove everyone around me to tears with all the questiosn, bust I just wasnt sure anymore. 

I moved away for law school and decided I was gunna stay ontop of things and really take care of myself. So I took back up running. Well I hurt myself and could barely walk. A visit to urgent care later I was dx with sciatica and sent to PT. My PT assesed and noted that my SI joint was really out, so we worked on getting it back and stregth so I wouldnt throw it out again. One day she reference that I was hypermobile like it was something I should have known. I started asking more questions and looking got more solutions. 

2 months later spring hit. My first spring in a new state and my first spring living alone. I had never tollerated heat well, and this was the worst I had ever had it. I fainted in my kitchen several times and couldt tollerate standing or even sitting. Back to UC and my GP I went. A bunch of tests and some really bad days later I was dx with low B12 and on injections, as well as POTS and on some midodrine. 

Once I could think straight again, i asked my GP if she thought it could be EDS and she quickly refered me to a genetic counsler. Once I saw the genetic counsler I quickly go dx with hEDS. 

Im still processing what this means. What is part of it, What is normal. What makes things flare. I also discovered in this journy that despite what prior therapists had told me, i didnt just lack confidence. I had more serious issues. But those are a different story, and one I dont understand quite so well. 

I guess this also kinda covered Day 3 too. 

[marleenfriends]

Don’t feel like adding photos. That’s a little too hard right now. But I’m struggling with my hEDS and kinda wanna talk about it so I’m gunna use this. Cool? Great.

Day 1: I’m... um.... simple answer is I’m someone with hEDS among some other physical and mental health problems going to law school, living alone and trying my best to take care of my body, even if I’m not good at it. I guess you can call me Marlee?

[marleenfriends]

[marleenfriends]

[marleenfriends]

Vaguely drawing for inktober. Not that I make any claims at being an artist. But I wanted to push myself to do the creative thing.

[marleenfriends]

Day 4 of work for fall semester. I feel like shit but I’m here and I’m doing it. Even if I can only think one paragraph at a time.

[marleenfriends]

Productivity

Today is day 3 of really doing work for this semester. I woke up totally burnt out already. I was scared of this. My load is heavy and I had a physically hard summer.

A short pity party and a chat with some friends later and I ate some protein, got dressed and set the goal of 1 paragraph. I’m on page 12 now and feeling so much better. This grad school thing might actually not kill me.

[marleenfriends]

I have dealt with these all so much that I had stopped enforcing boundaries. As we are starting to enforce them again it is so scary that we do it purely. We can't say it cleanly or in polite sentences. We are still getting variations of these. It is hard to say anything and we struggle. 

if you ask someone to stop doing/saying something that makes you uncomfortable and they respond by making it all about their own hurt feelings until YOU end up apologising to THEM, that’s manipulation. shut it down.

[marleenfriends]

if you ask someone to stop doing/saying something that makes you uncomfortable and they respond by making it all about their own hurt feelings until YOU end up apologising to THEM, that’s manipulation. shut it down.

[marleenfriends]

Just a bit frustrated that every time I tell people I finally got an official Dx (hEDS currently celiac a year ago) their immediate question is “So does this mean they have a plan to fix it?” or something to that tune. As if I haven't been explaining for months that this is what I thought it was and that it is a chronic genetic thing. Ugh. 

[marleenfriends]

[marleenfriends]

Midodrine + heat wave

Having sweat pour over your goose bumps is the worst cognitive dissonance type feeling.