It can seem absolutely impossible to consider how to do self care, when taking a trip to the bathroom can cause complete and utter exhaustion. I know I felt and believed this for a while into my illness. I hoped that others would be able to care for me, to supplement what I couldn’t do for myself… but I was wrong. What I needed, was some help with daily tasks. NOBODY, can fulfill, self care, except for yourself. And only you know how and what you need.
Is this just another ableist mindset? No, it isn’t
Feeling empowered while simultaneously feeling helpless, isn’t the oxymoron it seems to be, it’s allowing both things to be true. Feeling empowered while powerless, is how we begin to heal, emotionally, from the trauma of chronic illnesses and rare disease.
Did you just spend hours in the emergency department, trying to explain to the nurses and doctors how to best manage your health status, to an exhaustive extent? Hearing the beeping sounds, feeling the blood pressure cuff squeeze your arm every 15 minutes, hoping your vein doesn’t collapse while getting a blood draw or placing an IV – and trying to educate your emergency department team, about your illness, which meds you’re intolerant of, trying to convince them you’re not a drug addict if you need pain relief and explaining why you need to see your inflammatory markers? … just a massive, run on sentence to highlight the struggle…
It is a, day in the life of, being a chronic illness warrior. Because at some point, things that would’ve sent you running to the, emergency department, in your life before getting sick, you now endure at home, because as illustrated above – going to the emergency room, is an exhausting and traumatic experience. Oftentimes when they don’t understand you or what’s happening, they’ll just want or try to sedate you with antipsychotic drugs. This isn’t just my story, this is a common thing most, chronically ill patients endure. This is why we avoid the hospital as much as possible.
So how do we care for ourselves, within this reality?
⚫︎ Stop listening to the healthy
An exception is if they are a recent cancer survivor or are in remission from a severe chronic illness has been met. But the ableist mentality is one in which exists in, PRIVILEGE. Being told to get out and go for walks or engage in a hobby, deserves a well placed middle finger on the inside, and an outward, thank you, that sounds great… (que inner eye roll), because we know if we could, we’d be running, literally running, (and you probably thought that runners were insane, prior to getting sick).
⚫︎ Find a good, qualified, medical psychologist or therapist
someone who specializes, primarily, on those of us who are chronically ill. Someone who is honest and understands that it’s absolutely exhausting to walk 15 feet to fill your water bottle, especially on a treatment day or enduring a severe flare. Someone who doesn’t question your ability, listens to you about your disability and can guide you to a healthy mindset in approaching your health. Someone who isn’t afraid of saying, yes, you know you’re a burden, so it’s an insult to be told you’re not, a burden, especially when they treat you like a burden. That my friends, is an oxymoron and hypocrisy, which makes us all feel a whole lot worse. Just say, yes, this is a lot to handle, but I’m doing this because… (and we hope the response is, “you’re worth it”) but you never know… remember, the caregiver team may mean well, but they’re not always very sympathetic.
⚫︎ Embrace the loungewear ~ get your comfort items
Slippers, blankets, socks, filtered water bottles, body pillows, leg bolsters, heating pad, a caddy or tote to carry any PRN medications, supplements, tablet, cell phone, etc. this way, you can move from bedroom to living room with the least amount of effort and hopefully not forgetting anything in the room you just journeyed from. I personally like to keep headsets with all my travel stuff. It’s very helpful to tune out the world, and calm yourself with some music, which leads to this…
⚫︎ Make your own playlist!
You may be in pain, so need something soothing in your ears and mind, and shut out the world around you. Put on your eye mask, and tune in and drop out! Sometimes you have to be in, “power mode”, so you listen to, “I will survive” or Sia’s, “Unstoppable”.
But what if your ears are so sensitive that music isn’t an option and maybe your eyes are to weary to look at a screen? Use those same, noise canceling headphones and eye mask to shut the world out, and focus on your breathing. Hand on belly, breathe in for 7 seconds, exhale for another 7 seconds. Even if you only do this for a few minutes, at least it’s a few minutes of relief.
⚫︎ Make a list, set reminders
List all your medications and supplements, set your reminders on your phone to remind you to take them. Put these lists in EVERY SINGLE BAG OR WALLET YOU USE. Then put a one day supply of every medication and supplements in all of your bags or other things you carry regularly. This is helpful for ER visits, because you keep your updated list of meds, giving you less to think of, as you debate with the emergency department staff about your treatment and tests.
⚫︎ Prepare your hospital bag
It’ll have your lists, headphones, eye mask, warm socks, description of your illness/illnesses, spare house keys, shoes you can easily disinfect, like, crocs, in a plastic bag, as well as a change of clothing, in case if an overnight stay. Just having this ready to go, alleviates stress. You don’t have to think about everything you need, when your health spins out of control.
⚫︎ Have a hefty supply of your favorite movies and shows on hand. Whether you’re in the hospital or at home, feeling useless, you have the entertainment that soothes your mind, on hand. I like watching the, Tim Burton, Disney version of, ‘Alice in Wonderland’, because her 6th impossible thing? “I can slay the jabberwoky”. Priceless.
⚫︎ Never underestimate the power of meditation
It can do wonders… it can also really upset you and piss you off, if it’s a guided meditation. I have some experience with this. I was really suffering with pain, tossing and turning, I turned on my meditation and it was all about gratitude for my body, how it supports me – yadda yadda… nope, not me! Because I was in pain and exhausted, this simply angered me! So, plan ahead, find the proper meditations for each circumstance and have them, “ear marked”, that way, they won’t offend you!
…only a healthy person will roll their eyes with that suggestion.
⚫︎ Set your boundaries.
This is for yourself and others. I’ve struggled with how to communicate this among the more, intolerant, healthy people, that I don’t want to give up on… if they are trying to engage with you, via text or phone call, simply respond with, “in a flare, thanks for checking in, I’ll be in touch later”. How does this help you? It prevents you from saying something uncharacteristic of yourself to someone who is eager to use those comments against you.
Sometimes their proof of how, “out of control you are”. It’s a great way for you to feel terrible. Especially when your inflammation is so intense that your brain doesn’t work. Some folks are really great about ignoring a text or phone call, but for the, extroverted communicator, it’s really difficult. Best to have the, pre-written statement, about being unavailable to respond. After you feel terrible about having to do that, reach out to a sympathetic friend. Either someone from a chronic illness group that you connect with, or maybe you have excellent family support, and can reach out to them. Hopefully you can return to your movie and not give it a second thought.
⚫︎ Learn to manage the hours…
It seems silly. It seems silly when you think of life before getting ill. It seems silly when everyone tells you, “how time flies”, because you know there’s truth to this. However, the reality of life – enduring chronic illness, a minute can feel like an hour. Waiting the 15 minutes for IV pain medication can feel like 6 hours.
Hours for the chronically ill are passed differently and will change from moment to moment. What makes it bearable for you? Is there a spot on the wall you find particularly interesting? If not? Make one. A space without food without great, personal meaning, yet holds immense inspiration. Something calm. Focus. Breathe.
Once the worst of it passes, turn on that playlist, start the aromatherapy… gently feel something soft in your fingertips or do some gentle tapping of your fingers to your chest, heart, shoulders.
Now once that has improved and you are able to move? Watch a show, a movie, listen to a podcast if you can focus. Play a game on your tablet. Sometimes putting on fresh clothing helps, getting your heating pad or an ice pack. Drink something, hydration is so much more critical for the chronically ill. Rub your feet with lotion, put on comfy socks and slippers… text a person who understands your plight, someone who listens and can sympathize. Just don’t ask for advice from someone who doesn’t know this experience. If you have a kind, compassionate friend whom you trust? Who will not offer any advice or suggestions on how to cope? Talk to them for distraction, for a good laugh and a kind word.
Each hour is different. Some are wonderful some are true suffering. Especially facing and dealing with chronic illness. We only need to be mindful that the hours will pass and becoming your best friend is the best way to pass the hours.
It’s not lonely or sad… not after a while. But it is POWERFUL it is EMPOWERING and it is what makes the hours hopeful.
It makes time with friends and loved ones so much more wonderful because the need is lessened and the experience is elevated.
You are who you need the most
There is a reason why we are called warriors! We are in nonstop battle with brief moments of sweet reprieve. And we soak up those moments of sweetness with hefty gratitude. It the gentle hug we need after a long, bitter battle. We are bandasses!
Our strength cannot be measured by how hard we punch or how much weight we can lift. It’s measured in what we endure ~ it’s the unseen for many, even hospitals and doctors, because eventually we just start to stay home even though we need care.
How will you implement self care and self love for all of your hours?
If you are new to this? I challenge you with a little homework… make a list of a few things in each category:
1: 5 things that make you laugh
2: 2-3 people you know you can trust (make most of them other chronically ill warriors)
3: favorite colors
4: most inspirational symbol (could be religious or symbolic of strength, healing or gentleness)
5: a list of favorite comfort items (start small! You can add to the list as you go)
If you need a refresher? Maybe revise your list or learn a new technique. Join a new online group or create your own and of course, please, if you are in a crisis of hope?
Call a mental health professional – PLEASE!
This hour, this moment will pass! It becomes easier to manage with time. Show compassion, patience and self love and NEVER apologize for taking care of yourself! Many will not understand you, but I will. Other chronically ill and rare disease warriors will. There are plenty of us out there and we get it!
This makes the moments the hours easier. It’s a mastery that goes unmet and often unseen by those without heath issues. However you will meet the moment and you will masterfully learn to manage each moment, each hour. Because you are, my friend, a WARRIOR!
Chronically Fabulous Warriors 