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Self Care, Disability & Spoon Shortage

Self care – or taking care of yourself – when you have a limited amount of energy and/or when your disability itself requires so much out of you – can feel impossible.

I’m not some expert guru on this stuff. But I have some ass-kicking Complex PTSD (C-PTSD), Traumatic Brain Injury (TBI), I’m deaf, and I’m a single mom of 3 young children (one with Down syndrome). I am also very much in the throes of grief, having lost my brother (whom I was very close to) and my world shredded from my ex-husband’s crap.

The things that have worked for me won’t work for everyone; despite what popular culture says, we all know that people with disabilities are not actually the same (ha!), and that what will work with self care with our disability won’t necessarily work for someone else’s. So, I’m not saying that this is going to do it for you, but I am saying that the pieces in this article helped me a lot and I’m offering them here in the hope that they might be helpful to someone else.

The “Spoon Theory” is a “disability metaphor …used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. “Spoons” are a visual representation used as a unit of measure in order to quantify how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.” (wikipedia)

Let’s get started with the tips!

1. Laugh.

self care and disability
geckos always make me laugh!

Laughing releases soul tension and just gets you in a better space so you can move forward from that different space. Personally speaking, movies work for me – I love them! – but can rarely watch anything without my kids around.

Here is my post with a long list of all-time hilarious movies that you can watch with the kids around and lighten up.

But whatever works – whatever makes you laugh – make it a priority.

2. Get Outside

There is something about just getting outside that can break a funk.

Nature can snap us out of our head-spaces and return us to a place of being that feels a lot better. You don’t even have to do anything necessarily; just being outside is enough. For sure, walking, running or exercising outside will keep you up after, but just being outside can create a shift and help us with our self care, especially if we are depressed.

When I was living off the grid, I had an outhouse that forced me to get outside and I found that pretty useful, to be honest! Now that I am back on the grid and don’t have to go outside to go to the bathroom, I need to makes conscious effort to self care by getting myself outside.

I keep my home windows unblocked with light curtains, I keep the windows open most of the time and that allows for air circulation and to keep the outside on my mind and help make it easier to leave when I”m depressed.

3. Book of Positive Aspects

Get a notebook. Write down ONLY the positive things about anything you feel like – your work, a friend, a family friend, your home, whatever you want, but ONLY the positive. The idea behind this is that after writing a few pages of this every day, you are put into a different frame of mind and are lifted out of your funk.

It works. You need to sit down and resist the urge to write a bunch of pissed off crap; you have to ONLY write what you genuinely like about something, and move on to the next thing.

Self Care When You Have a DisabilityFor me, this can be something as small as the way the light shines through my youngest child’s ears, or thinking of my daughter’s “boss-walk.” Word choices of my eldest child always make me smile.

Focusing on these simple things and writing them down creates a genuine shift in how I feel about things.

My advice is to stick to the truth – the things that honestly make you happier when you think about them, and focus ONLY on them. By focusing on them and expanding your feeling on them, you can create a genuine shift in how you feel, and that translates all over the place in your life.

4. Appreciation

Some people call this “gratitude” but I don’t because I just don’t really like the word, “gratitude.” I prefer “appreciation.” Look outside and feel appreciation for your A-Team (- your angels and ancestors) watching over you and guiding you with love. Breathe deep and feel it, feel them. Feel the appreciation for every good thing that is in your experience.

Think about it, write it if you want, draw it, create it, whatever feels good for you.

The point is to consciously appreciate what is working so that more of the same will head your way. Like seeks like, so appreciating what you already have is a great way to get more in the same vein.

5. Keep track of what you are doing

I bought a Passion Planner this year (click here for my post on planners). Keeping a planner – like, really writing in it and doing it,  is one of the best things I’ve gotten back to doing, you know why? It forces me to keep track of all that I do. It collects my ideas, visions, dreams. I have little checkboxes for exercise, love & gratitude and meditation, goals to plot out and keep track of.

It’s totally overwhelming in the beginning  but then I get to rolling. I feel so alive, in charge! And when I feel like I’m going nowhere real fast, I can open that planner up and see that while I didn’t do everything, I did A LOT.

In self-care, I think it’s very important to remember our accomplishments. Give ourselves a back-pat now and again, you know?

6. Meditate.

This is gold. Forget anything else I’ve said; if you really want the essence of self-care, this is it. The essence of meditation is to slow our breathing, empty our minds.

The point of that is to ground us. It’s also to quiet our monkey mind and allow us to actually hear the Universe/Holy Spirit. Meditation empties the garbage and allows calm to flow and lift.

The draw for me in meditating is my brother. I remember my dreams when I meditate, and I miss my brother so much. Meditating is where I realize that he’s always close to me, and that most of my dreams involve him and that’s such an awesome thing to remember.

I wrote a post to help get you started and explain what it’s all about – the post is linked here.

7. Take Care of Your Shell

Your body is your shell, it’s your physical tool. We keep the tools in our kitchen sharp and functional, the yard tools working and we need to do the same for our bodies.

Plus: you only have this one, so be friends, make nice.

Decorate it, celebrate it, love it.

Feed it as best as you can, and exercise it, because those help it serve you better and it just feels good. Keep it sane (that might include meds). It also includes sleep, because without rest, we can’t do squat, we’re just lumps of fog-flooded brain.

8. Be Careful with Your Friends

If you surround yourself with negativity, it’s going to spill over onto you. You don’t need that crap. Keep your space drama-free, with good vibes by being selective with friendships, your time, energy, commitments.

This includes your online spaces.

If you see hateful stuff on Facebook, just unfollow that person – it’s really that simple. You can go a step further and report it to Facebook or unfriend them, but the simplest thing is just click “unfollow.” Keep the voices that resonate with you and lose the others. It’s more important for you to take care of yourself than it is to learn how a racist thinks.

9. Feng Shui Your Place (& Clean Up)

 Feng Shui is the ancient Chinese art of space arrangement (a great book about it that I used to get into it all is this one, Clear Your Clutter with Feng Shui Get rid of stuff you don’t use. Arrange your space consciously, harmoniously.

Clean up.

Get in tune with your directions, art placement and plants (another good book is this one, Practical Feng Shui, or just go to your local library and check out all their books on Feng Shui!).

This might seem trite, but after working as a career counselor for 5 years, I noticed through an accumulation of random conversations that there was a direct correlation between how a person’s life was going and what a mess or how off their personal space was. This is important, yo!

I know how overwhelming it can be, trust me, I do. Small stuff counts – check out the Fly Lady to get started with tips when it’s just seems TooMuch (she helps me so much, I can’t even say).

10. Get Creative

Color. Get one of those doodle books that they are selling everywhere. Whip out your paints and get busy with your kids. Play dough, legos, collages, chalk art, poetry, candle-making, sewing, knitting, beading, whatever floats your creative boat, DO IT.

The creative stuff seems to flood your brain with stabilizers that help you cope with hard things (okay, I totally just made that up, but it sounds good, doesn’t it? And most importantly, it really does help!).

11. Get Support

I know I need support, and I usually need more than I ever have.

Support can come in the form of help with my children – and in particular, my child with Down syndrome. It can be a friend who I can really talk to, who will listen to me without judgement or advice. Someone to make me laugh. A space where I can cry when my grief over my brother’s death and the changes in my life overwhelm me.

It is really hard finding support.

It can be so hard finding support that I know I speak for others who are single parents and/or need support so badly but find accessing it such a challenge that saying something like “get support” can feel like an affront. Like, “how on earth do I just “get support?” – I can barely do the things that are holding my life together.”

I mean, I get it. Here are some things that worked for me:

  • Online connections: my friends are all over the place, so I turn to Facebook a lot to connect with them and with groups that have members in similar situations as I (here’s my post on Facebook groups related to Down syndrome). I’m in disability-specific groups and mom-groups and I have found support through those.
  • Respite: I’ve sought out respite care for my daughter – always a great option for other parents of kids with disabilities (please comment if you need more information). This gives me time and wherewithal to breathe or do fun stuff with someone else helping with her.
  • In-person groups: I’ve joined a grief group in real life. I’ve also tried joining various local churches and temples in the hope of finding more community support.
  • Therapy: This is really important for most of us (people with disabilities and parents with/without disabilities). Price was a factor for me and it took 6 months for me to have everything set up with it. I receive therapy for both C-PTSD (through my insurance) and grief counseling (through victim’s compensation). These are very important components to keeping me mentally well.

12. Give Back

There is something incredibly powerful about giving to others and helping.

Even if it’s 10 cents, even if it’s a hand to help open a door for someone struggling with too many groceries, whatever is it, it empowers our spirit to know that we have enough to give someone else and help.

When I help someone else with something they are having a hard time with (- say, finding a job, navigating the disability system or writing a resume), I feel SO AWESOME. This is something that flies my kite and the more I can tap into the things that make my spirit soar, the more I am tuning into the Universe and really taking care of myself.

We don’t have a lot of money at home. But I make sure we give a portion of what we have to others because I want my kids to grow up knowing that we have enough, that we will always help others and that we can afford this. If we have only one banana, we will give part of that banana to someone who is hungry.

It empowers us to give. 

For those of with disabilities, it’s  so important to remember this and do this as a part of our self care. I’m saying this because a lot of us have need social services, social security and public benefits which can make us feel like a drain on society or a burden. Popular culture sure tells us we are! We need to give, not to validate our worth or existence, but give so that we remember how powerful we are.

13. Inspiration

It cracks me a up a little to write this because so many of us are held up by pop culture as their inspiration, “if s/he can do it – just smile and be alive, then I have no excuse! You are my inspiration, oh, non-walker, non-hearer-not-seer, you!

Screw that.

But I think it’s true that we all need something or someone that makes us want to do something. We need – in the literal sense of the word, “inspire” – to have life breathed into us.

For me, it’s my kids. I get up and keep trying, keep going, keep at the self care and don’t hurt myself because I have these infinitely precious people counting on me, looking up to me and using me as their litmus for the truth of this world and physical experience.

Obviously that’s not the ticket for everyone, and the only person who knows what is going to work for you is you. But as Yoda says, “find your inspiration, you must“. It’s the gas to the engine of your life and will allow you to rev up your engine to take care of everything else.

The Truth About Self Care

The truth about self care is that it’s an ongoing process. It’s not a one-time box to check off. The truth is that the small things that we do every day are the ones that are going to add up to make a real difference in our lives. The truth is that there is nothing easy about this for us, but that it’s all pretty simple. The truth is that the option of not engaging in self care is going to suck the joy out of us. The truth is that every single person with any kind of disability needs to focus like a jedi-master (lifting a spaceship out of  a swamp) on self-care because while we may need it the most, we tend to get it the least.

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When You Are Running Out of Spoons: Self Care When You Have a Disability: When the going gets tough, the tough get into self-care: ways to self care when you have a disability and it seems too overwhelming
Meriah
Meriah Nichols is a career counselor, teacher and blogger. Single mom to 3 (one with Down syndrome, one gifted 2E), she is also a Trekkie who likes her coffee hot and black.
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