chronicmigrainetime - Tumblr blog

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gps but for a way out of this

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a moment of silence for all us disabled ones who had to watch each of their friends move on with their lives without you and get jobs, go to school, have partners come and go, get engaged and move house etc.

shout out to my fellow struggling people who are still sitting in the same bedroom they grew up in. the ones who can't get a job, can't make new friends, can't find a partner or partners, can't move house and can't go to school.

I hope one day we can all find someone to at least sit with us in our rooms. I see you and I understand... and I'm sorry we can't be that person for each other

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It’s okay if you can’t do something.

There is so much “positivity” surrounding the idea that you can do anything. No matter what. Regardless of chronic illness, mental illness or whatever else. You just have to put your mind to it.

And you know what? That’s bullshit. There are things we can’t do and we will often feel ashamed or harm ourselves trying.

Even if someone else with a similar experience can do something, it doesn’t mean you should automatically be able to. Even if you could do the same thing yesterday, it doesn’t mean you always have to be able to.

Sometimes you can’t do something.

And that’s okay.

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a disproportionate amount of my time is spent questioning why the HELL i have a headache this time

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One of those things about chronic illness nobody ever talks about is just how much it makes you feel like you have to apologize.

Sorry I'm late; I couldn't get out of bed. Sorry my weird breathing kept you up all night. Sorry I couldn't make it to your party; I was half conscious on the floor all evening. Sorry I keep forgetting everything you tell me; I promise it's not because I don't care. Sorry I seem so out of it all the time. Sorry I'm not "present" enough when we hang out. Sorry I need to be taken care of sometimes. Sorry my body is breaking and it seems like it's inconveniencing you more than me.

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It's been forever since I've posted so here's a fun (very simple and surface level) infographic about POTS I made last year for an assignment that also helped explain my extremely poor attendance.

Please note that I am not a doctor or an expert, I only have google and my personal experience as someone diagnosed with the condition.

[Image Description:

An infographic poster. There are text boxes surrounding a cartoony illustration of a person looking sick. From top to bottom: Spotting POTS Symptoms of postural orthostatic tachycardia syndrome, Brain fog (forgetfulness and difficulty with concentration), Headache, Dizziness, Fainting, Fatigue (exhaustion), Insomnia, Chest pain, Shortness of breath, Shakiness, Excess sweating, Heart palpitations, Blood pooling, Low blood pressure, Nausea, Bloating. On the left side is a simple illustration of the brain and spine. The text reads: Impact on the autonomic nervous system: POTS disrupts the bodies ability to balance heart rate and contraction of blood vessels to maintain normal blood flow despite changes in position. Along the bottom of the poster is a depiction of an increasing heart rate. The text reads: Standing for an extended period of time causes a rapid increase in heart rate and a worsening in symptoms for POTS patients. A tilt table test monitoring this increase is the primary diagnostic tool for the condition. A second text box reads: 10 minutes: sustained increase in heart rate of 30bpm or more. ]

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i realized i never posted this on tumblr??? anyways here ya go tumblr

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why is the human body composed of such capricious tubes

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Are you heading for a burnout without even realizing it? For neurodivergent folks, the warning signs of burnout may look different and be harder to recongize. 

Neurodivergent or not, we all need to understand our limits and boundaries. When you’re neurodivergent, you may not know you pushed yourself too far - until it’s too late!

Need help with some of the terms in this post?

😎 “Masking” or “Camouflaging": a coping strategy that many neurodivergent people use to suppress aspects of themselves to appear neurotypical. It’s important to note that social masking is a tool many neurospicy folks use to keep themselves safe, and usually starts in childhood. 🥄 “Spoons” refers to Spoon Theory, which is a metaphor describing the amount of physical or mental energy that a person has for daily activities and tasks. It is a helpful tool for disabled and neurodivergent folks to describe their energy. 👋 “Stim” short for "self-stimulation" is a term used to describe repetitive behaviors or movements that people may engage in to help cope with emotions. It may include rocking, flapping hands or twirling. 

If any of this resonates with you, try letting the “mask” slip a little! 

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Living life as a disabled person. What I’ve learned, three things really help.

1. Have projects. You need something to work on. Something self indulgent. Play an instrument, write a fic, archive something, make art. Whatever it is, it needs to be something your disability is least likely to regularly interfere with. If you are not working on something, all you have is rumination.

2. See people regularly. If you can’t do that? Call them. Talk. Send letters to each other. Sit on FaceTime and start a movie at the same time and listen to each other laugh. However you can be close to people. This shit gets lonely. Once your disability gets to a certain point, It’s very hard to make new friends. If you have them, treasure them. In my experience, Irl interaction with people who care for you is the absolute most helpful thing

3. Find joy in the simple things. For me lately? It’s been fruit. How it looks in the light, how different it tastes fresh, dried, juiced, in pie. How to dry satsuma peels for tea. How to cut an apple perfectly. Whatever it is for you, focus on something beautiful.

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I don't wanna dance around the fact I'm disabled and don't do anything. I feel like it invites questions and unsolicited advice though. How am I supposed to have a normal fucking conversation w someone ever.

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Best things about being disabled:

Not necessarily being in a flare up, but it’s been two weeks of things not being right and each day you lose more hope that it’ll ever be okay again

All food and drinks are making you sick, even water churns your stomach

The weather can make your writhe in pain

Not being able to do anything, watching TV is exhausting, even scrolling on your phone requires a modicum of attention

Sitting upright is painful

Lying down is painful

Keeping your eyes open is effort

Wishing you could be the old you, the healthy you

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im terrified.

I ve had this for over three years, its constant. its pain, tinnitus, noise sensitivity, the insomnia, the muscle tension, the brain fog. its the occasional immobility. the rare paralysis. its spending three days not being able to practice basic hygiene or eat

I’ve just graduated from uni. Everyone I talk to tells me that Im amazing for even getting beyond my first year with my condition (I started uni within 8 months of me getting migraine). They say I should be proud of myself and I am but

This last year was so hard. My depression is at an all time high, I wake up and go to sleep anxious. My pain was so bad. I spent 4-6 weeks bedridden and alone

How am i supposed to enter the workforce?

I know I’m capable, logically speaking I graduated with a law degree in a debilitating condition. I managed to do quite well for myself despite spending essentially 5 weeks completely incapacitated so part of me knows I’ll be okay.

I also know how bad it gets, how bad it was in the beginning, how bad it was during those weeks, how bad it was just at the end of last year, how bad it probably will be despite my every precaution.

if you have any advice Id greatly appreciate it. I know i need it.

Hi iselenris, I’m so sorry you’re going through this. It is scary, and I can understand why you would want to scream into the void about it. I have given it some thought and hopefully I can say something helpful, or at least provide some comfort that you’re not alone.

I can really relate to a lot of what you’ve said here. I became incapacitated by chronic migraines at the start of my second year of uni, had to take a year out and then came back part time. I did eventually get my degree (in physics) but it was a real struggle and incredibly detrimental to me physically and mentally.

Now you and I are both out here with prestigious degrees that we worked really hard for and that we can’t put to use. I agree that it is a tremendous accomplishment and I think you should be proud of yourself, but I also understand the hesitation to celebrate fully. We put ourselves through hell to get here, and that’s not sustainable. So what do we do now? And if we can’t do the thing we wanted to do with our degree, why did we put ourselves through all that?

It’s now two years since I graduated, and I still haven’t ‘entered the workforce’, which is maybe not the most hopeful thing to hear, but I do think in that time I have found an answer to those questions.

My answer to ‘what do I do now?’ Is to make you and your health your top priority. I get the sense that you know that this is a crisis, I think it’s a good idea to treat it as one.

I don’t know your situation so I don’t know how possible this is for you, and maybe this is a frustrating thing to hear, but my main advice on how to do this would be to stop for a while. If you keep going when your body is telling you to stop, eventually it will force you to stop, y’know? Unfortunately, stopping obviously requires outside support, but if you have that now is the time to use it. If you are in a position where you don’t have to work, don’t, and if you’re not, find something that uses the minimal amount of your energy while keeping you afloat. If you have the option of someone else making your meals, take it, if not make your meals as easy as possible. In any case my advice would be to use the time that you have stopped doing other things to:

Rest without feeling guilty, you are doing the work of healing

Unlearn the idea that your worth is tied to your ability to work, you are enough just by being you

Take note of how your body is feeling and respond to what it needs

Prioritise yourself and your body’s needs above any “shoulds” and “oughts”

When you do have the energy to do things, focus on the things that bring you joy or make you more comfortable

Learn about your condition(s) and the things that might help you

Decide what kind of medical care you want to try and get (if any), and get the ball rolling on it

How long will it take to feel well enough to come out of this recovery state? We cannot know. But I know that (thanks to a combination of all of this, and finding some medications that work for me) I am feeling better than I did a year ago, and much better than I did two years ago. I may not have ‘entered the workforce’ but most days I know I can do the work of being a person (which is not an insignificant amount of work!). On the good days I can even imagine getting a job again, and then I’m glad I did finish my degree, because I know it will still be there when the good days become frequent enough for me to use it.

If you are looking for advice on the more medical side of things I will point you to this post, this resources list, and the #ajovy tag on my blog. I can also give more specific advice on navigating medical things if you’d like, but I don’t want to do that unprompted.

I hope that some of this is helpful to you, and I hope you are able to find some improvement. Be kind to yourself

- C

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I think that it's really important for people to realize that being disabled is traumatic. genuinely. your body and brain feel like they are breaking down and wrong. you are in constant heavy stress from stuff like chronic pain. most disabled people i know have a somewhat regular emotional break down from the trauma of it all. and we are expected to just smile through it by society, to not be in the way, to not be an issue.

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symptom journal quilt by Nicole Jones Studio

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I know as soon as I say this, I'm going to get jumped on and told to rest, but I'm literally so far behind with everything it's making me want to scream. I hate this. I hate not having the energy to talk to friends. I hate being unable to reliably work when I want to. I hate not even being able to enjoy leisure time because so much of my mental bandwidth is being used up by stress and pain.

And I'm trying to give myself grace because guilt and shame will not make me achieve any of these things. But good god it's so hard sometimes.