Why both pushing too hard and inactivity are harmful while living with a disability/chronic condition: The delicate balance for a bright life.

"Just Fake it till you make it"

"Pull yourself up by the bootstraps"

We live in a fast-paced society that looks down on those needing help; there is no denying this. When you tend to move about or process the world slower or in a different fashion than the average person there is a strong urge to "Keep up with the Jones' " Naturally we want to be able to keep up with our peers and often when we live with a disability it can make joining in on basic aspects of life that are often taken for granted difficult or even impossible. Whether it be reading, comprehension, walking, or bending or the larger aspects of life such as working, school, home/apartment ownership, socializing, and general independence.

It can be easy to get into a vicious cycle where we spend our days trying to run a marathon where it is simultaneously never-ending and never feels like it's ever enough despite the amount of energy you use to exert to get things done and the amount of pain or burnout you feel after.

Conversely, we may fear our symptoms so much that we fall into a vicious cycle of inactivity. We may stop doing the things we love and lose even more ability than our condition already takes away. Our conditions may become the center of our being.

Living with a disability is hard. It seems like no matter what we do, we can't win; either we masquerade and run ourselves into the ground, feigning that we are AB/NT (Able-bodied/Neurotypical), and recovery times get longer and longer, or we become even more deconditioned, dependent and depressed.

No one ever teaches you how to live with a disability or chronic condition to go from surviving to thriving. They expect you to either depend on those around you or again...." Fake it till you make it. "

As someone who is a seasoned chronic illness & neurodivergent veteran and has experienced both being bedridden and semi-independent, let me give you some tips to help manage the chaos into something a bit calmer, even if your chronic condition has to tag along for the ride.

Here is a quote of mine that I would like any readers to take away from this post

"Honour your limitations and maximize your abilities" - Mtisunge

Tip #1 - Cover your basics: Diet, Exercise, Sleep Hygiene, and Hobbies/Volunteering.

Hear me out; I know a lot of ableds and NTs tend to assault us with the "Have you tried yoga and changing your diet cure" spiel and how frustrating this micro-aggression can be. Even though it will not cure our conditions, it can definitely lay the basis for a life that is more well-managed. Food is our basic fuel and can affect not only our energy/pain levels but our thoughts as well. Finding out what triggers you to feel a certain way can be helpful. The same can be said about exercise. As someone who has exercise intolerance, I found myself feeling defiant every time someone recommended exercise, and I became sedentary. I wanted to scream," But you don't KNOW how painful and tiring exercise is for me". But when I started exercising in a way that worked WITH my disabled body instead of running her finite resources into the ground, I found myself having a little more energy afterward, having fun, and yes, even losing 20 lbs! Moderate not Intense Chair workouts and breaking down your exercises into smaller segments can work wonders! However no, It is not a magic cure.

This also goes with good sleep Hygiene and having at least one hobby. Good sleep hygiene is paramount to body and mind functioning and can change everything about your day; if you struggle with insomnia, then consult your doctor or a Somnologist.

Hobbies and/or volunteering are more important than most people think; this goes even heavier for those with chronic conditions that prevent them from gainful employment. When I was bedridden & housebound, one of the biggest things that helped me cope was having a hobby in place of an occupation. During those hours I was able to be alert I needed something to occupy my time, a hobby like blogging, reading, or making art gave me purpose, and when I would go out for doctor appointments and strangers asked the dreaded question

"What do you do"

I said "I have a disability and can't work however I spend my days doing (insert hobby/volunteer organization here)" Depending on your level of ability you may be able to volunteer or go to an interest group that is virtual or physical based off of the hobby or organization that you choose and build community with those in that group. It is important to have something that enriches our inner & outer world, mind and body are intrinsically connected.

A quote by Jim Carey about depression: "I believe depression is legitimate, but if you don't exercise, eat nutritious food, get sunlight, get enough sleep, consume positive material, and surround yourself with support, then you aren't giving yourself a fighting chance."

Depression is a chronic condition and is often comorbid with most chronic conditions. If we choose not to manage our conditions and not lay a basis for our lives to be as healthy as possible, then we aren't doing ourselves any favors.

Tip #2 -Honour your limitations: Listen to your body.

It is always easier said than done, but this is crucial in the quest to live a fulfilling life with chronic conditions; our bodies are loud; they are always talking to us, and if we constantly ignore the signals, we'll be lost in disconnection. It is important to stop and rest at the first sign of pain, fatigue, overstimulation, or heightened symptoms. Do not power through. The same can be said about taking medication: take medication when you have a little pain, anxiety, or symptoms. Don't wait. It is easier to treat a little pain/anxiety rather than a lot.

This is a crucial step in being able to accomplish more for longer. My mother always said little by little, step by step, a little patience won the race. Living in a way in which you listen to your limits and don't stubbornly insist that you are, in fact, AB/NT and allow yourself to pace for success will create longevity in whatever efforts you are pouring into your life. You know your body better than anyone else, the trick is to do as much as possible without triggering overstimulation or pain, even if this means you have to do it slower, in breaks, or differently. For some people, you may not be able to rest in the traditional sense. Sometimes, a change of position or activity is best to slow down and transition out of activity.

Tip #3 - Maximize your abilities: Modifications & Methodical Mindset

What are you still able to do? What are you partially able to do? Brainstorming about this and asking yourself questions like "How can this be done easily?" Could you change the method you're using? Could you sit down and take a break? Do something that is not the same but similar? Use assistive technology, mobility devices, fidget toys, or ask for accommodations?" How can you modify what you struggle with into something a bit more manageable? There are assistive technologies for most aspects of life, from stimming, ,self-care, mobility, eating, dressing - shameless plug on Twenty Too Clothing's Adaptive Selection; There is even specialized AT for certain hobbies like gardening, or some sports. You can ask for accommodation both at work and school; this, along with Mobility devices and Assistive tech, are not things to be ashamed of. Learning to accept your body and mind and the way they function is a sign of strength rather than "giving into" your condition. Also, can we talk about that? I don't think there is such a thing as giving into it; there is only falling into inactivity and depression, which are natural parts of life. We all have highs and lows, Disabled or not.

Tip #4 - Get Creative and Innovative

One of the things I love about the disabled community is the amount of creativity and innovation we have, it is forged from the strength it takes to fight against both ableism and the challenges that come with being disabled; with that said not everything that will help you manage a disability is marketed as a medical product. Get creative and innovative. Maybe you could use a portable hot pot and a mini fridge to take care of your meals if you are bedridden and no one is around.

A lower cost option is keeping dry foods/meals nearby and purchasing an electric tea kettle.

Collapsible camping stools are great if you need a seat at random.

Neck fans are great for fatigue to keep your airflow

DIY fidget toys such as balloon or rice stress balls, slime, or pipe cleaners are another way to get your needs met.

One of the greatest resources for tips is other spoonies; however, you can find them, like the advice on this blog and other spoonies blogs, socials, support groups, and online forums based on your specific condition.

Tip #5 - Management

There is a lot of talk about the many apps and even smart-watches you can use to track symptoms as well as food diaries readily available on app stores and tech store shelves.

However there is another way to manage your chronic condition, and it is to use a color-coded calendar.

I manage multiple virtual businesses, receive care from a caretaker weekly, go to regular doctor appointments, and manage my social life and my disability, all from Google Calendar.

Different colors mean different things to me.

Green is rest; Red is medical/PCA appointments; Blue is business/work reminders; yellow is social; orange is support group reminders; brown & gray are reminders and tasks; and purple is mental health reminders. All reminders are optional based on what they are and how I'm feeling.

The most important thing I want you to take away from using Google Calendars to manage your disability is that every time I go out, and have an "outing hangover" (the recovery period from doing something strenuous with a chronic condition.) Once I wake up the next day and feel how much fatigue I have I estimate the minimum amount of days it will take me to return back to my equilibrium, of course sometimes it might take longer or even shorter the point is to make sure I'm spending those days taking it easy and not scheduling myself out into burnout.

Scheduling in rest with disabilities.

Pace for success

I only schedule to do up to 3 tasks for 3 days out of the week such as medical calls or emails that need to be sent out regarding my healthcare or my businesses. This doesn't seem like much, but if I am consistent, I can accomplish 9 things per week. Of course, on Google calendars, some tasks spill over - this is fine. It is okay not to finish in one burst.

Clock

The clock app can be a very useful tool, set an alarm for how long you estimate you will do an activity before becoming overstimulated or pained.

Another way to do this is to set a stopwatch before engaging in an activity to see how long it will take before symptoms become heightened to give you a more accurate picture.

To summarize:

Living with a chronic condition can be challenging, although we can take steps to manage it and live the life that we want or something similar to a life that we want. There can definitely be grief in leading a different life, but that does not mean it can't be a fulfilled life. There will be more tips and videos on this topic stay tuned!