The most common question I get is some version of “how do you do it?”

This usually comes after I explain my various health issues. I am very open about the fact that I am very disabled and have a laundry list of chronic conditions, and after people learn about them all they seem confused about how that can be true while I live a “normal” looking life.

So I decided to answer the question best I can. I don’t honestly know if this is what people are wanting/expecting when they ask but until told other wise I am going to take it in the most literal sense (I am never beating the autism allegations, because they are true) and so this post will be in two parts.

One where I explain what an average day looks like for me, the second part will be more of a summary of how each disability/illness effects me on a day by day basis.

As always let me know if you have any questions or if there is anything else you are curious about.


What I do in a day:

I wake up, usually between 730am-830am
I eat breakfast immediately because I need to eat so I can take my vitamins and meds but I have to do it while I am still half asleep because I don’t actually like eating breakfast so I have to trick my brain by eating while half asleep
After starting to eat I drink my coffee, because caffeine on an empty stomach spikes your cortisol levels so I avoid that (my cortisol levels are high enough on their own thank you)

After taking my vitamins and meds I chill for as long as possible trying to wake my brain up by reading and/or playing a puzzle game on my phone (despite 10 years of trying to force it I am still not a morning person so it takes work to get my brain engaged in the morning)

For the rest of the day I have a few general rules I have to follow to keep my body functional, I eat a meal every 4 hours because I do not have an appetite, but have to eat upwards of 3000 calories a day to keep up with my metabolism, and I have to eat often rather than just a couple large meals because 1: I cannot eat too much at once, it messes with my stomach 2: I cannot spend too long eating, I get bored and overstimulated, not to mention my jaw will get sore if I have to chew for too long

I keep track of my activity levels throughout the day because I need to be active enough to keep my circulation up, and I need to do resistance training (usually lifting weights at my local gym) 4 days a week to keep my muscles engaged/growing to keep my joints in place, but I also cannot over do it or else my POTS, migraines, and/or my epilepsy will act up.

My sweet spot tends to be at least 10k steps and 120 “active” minutes, but no more than 20k steps and 300 “active” minutes.

Throughout the day I also have to stay aware of balancing my chronic fatigue with my caffeine consumption, because some caffeine helps keep me awake and my heart rate up, but too much caffeine will spike my heart rate too much and set off my POTS.

At night I try to start getting ready for bed by 11pm at the latest because I know how long it takes me to actually fall asleep and I need to consistently get 7+ hours of sleep or my migraines and epilepsy will be set off.

Before going to bed I need to shower, using my african sponge net for exfoliation because my skin does not like to shed on its own, do my skin care, brush my teeth, take my meds, put my hair in a bonnet or head wrap, put on my compression socks which keeps my blood from pooling in my legs while I sleep and helps with my restless leg syndrome, and then I use my dry herb vape to take the cannabis I am prescribed for my epilepsy, chronic pain, migraines, insomnia, and PTSD.

I then read and hope I fall asleep.

I often can sleep through the night because of everything I now do to accomplish that goal, but inevitably there are nights that I will wake up through the night because of my epilepsy, restless leg syndrome, and/or PTSD.

The next morning the cycle starts again.

How Each Disability Affects Me On The Daily:

Epilepsy and Migraines:

I have included these in the same category because they are linked for me, luckily enough I have seizures with auras so I can tell when/if I will get one and can usually take my emergency meds to nip it in the bud, when I say my migraines and epilepsy are linked I don’t only mean that chronic migraines and epilepsy are very similar in a neurological sense but also for me one will always trigger the other, so if I have a seizure I know that if I don’t do something about it it will bring on a migraine, and if I wake up with a migraine I know that if I don’t do something about it I will have a seizure. I also have cluster seizures, so if I have one and don’t take my emergency meds I will end up having more seizures for at least the rest of the day. My migraines and epilepsy are both triggered by lack of sleep, not eating enough, not drinking enough water, certain smells/vapors (think bleach and other strong chemicals), and by flashing lights.

Because of all of this the biggest ways they affect me daily are as follows:
I have to sleep at least 7 hours a night, drink at least 3 liters a day, and eat well balanced meals regularly.

I have to be cautious with smells and lights, I try to always make sure I have sunglasses with me for emergencies.

I keep a strong blue light filter on my computer and phone at all times.

Chronic Pain:

I have a mix of disabilities that cause chronic pain, fibromyalgia, migraines, restless leg syndrome, neuropathy, and Ehlers-Danlos Syndrome, I take meds to keep the pain in control but there are some other ways that they effect me:

I have to be cautious about certain injuries/infections because living with chronic pain my entire life has made my pain tolerance very high, which may sound like a good thing but it also means I cannot tell how bad an injury or sickness is, if pain is a body’s warning system then mine is broken. I currently have a hole in one of my ear drums because I could not tell my ear was infected until after the infection burst through the drum.

I have been living with most of these my whole life and now have medication that keeps them in control so it rarely happens, but there are days that my pain makes it hard to do anything.

These are all also triggered by the cold so I can’t be out in the cold for long. I struggle in the winter, and can’t even go swimming in cold water unless it’s sweltering outside.

Chronic Fatigue:

Chronic fatigue is one of those things that never goes away but you learn to push through it as much as possible.

The worst way this affects me daily, beyond the obvious is, similar to my chronic pain, fatigue is a warning system from your body telling you to rest and recuperate, but mine is broken.

I struggle to tell when I have actually pushed myself too far or when I actually need to rest because I am always tired in a very bone deep way.

I have described this in the past as I often feel like a marionette doll held upright by strings made of pure willpower and spite, if I let go of those strings at any point I will collapse.

POTS (postural orthostatic tachycardia syndrome):

My POTS is all about balance, I need to stay active throughout the day to keep my circulation up but I cannot let my heart rate spike too much because that will trigger a POTS episode (ie: I faint) 

I have to make sure I consume a good amount of salt and drink electrolytes every day.

I try to take at least 10k steps a day (but no more than 20k or else I am pushing myself too much and risking triggering my disabilities to worsen) and stretch before standing if I have been sitting or laying down for an extended period of time.

I wear compression socks to sleep to keep my blood from pooling in my legs while I sleep.

I have to finish every shower with cold water, have to be really careful with hot tubs and the like, and summers can be difficult because excessive heat will trigger a POTS episode.

Ehlers-Danlos Syndrome:

I still have not found all the ways my EDS affects me on a daily basis, EDS is still being studied and its effects are far reaching.

EDS in general affects all of my connective tissue making it weak and stretchy.

The most obvious way this affects me is my loose joints. I have to continue to build and engage the muscles around all of my joints so that the muscles themselves will hold my joints together because the connective tissues won’t do it.

I have to get at least 3-4 days of resistance training in a week or my joints will start dislocating while I do the most basic activities like walking, opening a jar, sleeping, or driving.

I have to avoid high impact activities like running or any contact sport.

Your digestive track is made of connective tissue so as you can imagine my EDS effects my eating habits, I cannot eat foods that are too oily or heavy, I have to be picky about how much red meat I eat and even have to be careful to not over do it on the dairy, if I eat too quickly or if I eat really cold food than I will get stomach cramps.

Since your skin and blood vessels are also made of connective tissue they are both very delicate for me, I can and do get cuts and bruises constantly, the doctors also suspect my EDS is also the cause of my allergy to adhesives, so I cannot have stickers or bandaids on my skin for longer than a couple hours or else I will get a really bad rash.

I also scar extremely easily.

Restless Leg Syndrome:

Restless leg syndrome actually can affect all of your nerves, not just those in your legs. It basically just means my nerves will randomly activate even with no outside stimulation, it also makes my nerves very reactive in general.

It can be painful for me but my medication keeps that part mostly in check. The compression socks I wear at night helps keep it in check at night as well so it wakes me up less often. 

When it comes to my over reactive nerves that mostly affects me when I am getting a massage or a tattoo. I can get very jerky because of involuntary movements when/if they hit certain nerves.

Nerve Damage:

I have nerve damage in half of my face and in one of my salivary glands because of a tumor that I had to get removed from one of my parotid glands (along with half of that gland) and the damage is worse than it should be due to the surgeon choosing to use an incision type he had never done before.

This means for me that if that if I haven’t salivated much for more than a few hours when I do need to use that gland (I eat, drink, or do something that causes my salivary glands to activate) it feels like I am being stabbed right under the back of my jaw (where the remaining half of that gland sits).

If I get too tired then I will start to lose control of that half of my face that has nerve damage.

I have a bit of a leaky lip on the side with nerve damage so I drink with a straw as much as possible to avoid spilling things all over myself.

Hole in My Skull:

Almost 10 years ago now I had to get what is known as a Chiari Malformation Decompression Surgery.
Basically I had a malformation at the base of my skull which was causing my brain stem to block the flow of spinal fluid into my brain. The decompression surgery cut out that piece of my skull and expanded the dura layer around my brain to allow my space for blood and spinal fluid flow.

This surgery was life changing for me and was what allowed me to get well enough to build all these coping skills that allow me to live my life. However it does mean that I have a hole at the base of my skull, it feels similar to the soft spot on the top of new born babies heads.

Day to day it means I have to be very careful not only to make sure I don’t hit that spot, but also I can’t have any pressure or pull on that spot.I cannot wear hats or head wraps that are tight in that area, if my hair in that area on my head is long than I cannot put it up because that will pull on it, I have to warn hair dressers and massage therapist so they don’t touch that spot, I even have to be careful looking up because that can cause my head to put pressure on it.

That is all, at least all I can remember at this point, as I said at the beginning let me know if you have any questions, I really don’t mind answering them.

Thank you