They gave each other a smile with a future in it. –Dream a Little Dream (1989)
Many say the words, then real life begins. Money-Children-Family-Work-Sex-Hormones-Communication-Health. So much joy, so much stress. How to keep the train on the tracks?
Relationships are difficult at the best of times. When chronic illness invades that relationship, whether through one of the partners, a child or another family member, the pressure of the everyday realities of chronic illness creates a potential power imbalance that not all partnerships are able to withstand.
One of my very first posts, Shoutout to Partners, was not planned until I read the plethora of Facebook posts about chronically ill people being abused or abandoned by their partners. Helplessness, resentment, financial burdens and sadly disbelief, seem to be the primary reasons partners flee.
So what about the ones who stay? The ones who are there to pick up the slack when you hit the wall and have to get horizontal? They are special humans, those ones. They may not always know exactly the right thing to say or the right thing to do, but they’re there. They stay.
In sickness and in health. Whether you did the official thing or not, when you decide to share your journey with someone, commit to riding life’s rollercoaster together, that’s sort of a given. The problem is, most people don’t think about chronic illness until they’re drowning in it. And there are some who will push you out of the lifeboat to save themselves.
If you’re chronically ill and are lucky enough to have your person, even if that’s a friend not a life partner, remember that they’re on this journey with you. As much as we need support to stay sane when feeling like crap day in and day out, we need to be cognizant and appreciative of the experience of our partners. Hug your partner/friend/support person today!
Chronic illness can be terribly isolating. For those that live alone or have been abandoned by or left toxic relationships, even more so. For those people, I encourage you not to give up hope. Not everyone is strong enough to handle chronic illness if they have a choice, but they are out there. Don’t give up hope.
In the meantime, I’m always here. If you need someone, please reach out.
Have a wonderful week!
❤️ Amanda
If you want to see a great but obscure 80s movie, I highly recommend Dream A Little Dream, starring the infamous Coreys and the wonderful Jason Robards. My brother and I were obsessed with this movie when we lived together one summer during university. Here’s the trailer:
First, let me tell you that I shared more pictures of stunning Cortes Island, BC, and beautiful Hollyhock Resort where I spent four days at a writing retreat, at the bottom of this post. So, if you’re not in the mood for reading about the oh-so-fun topic of anxiety, with a side dish of introversion and MS sensory overload, scroll on down.
View with a room
Retreats are meant to be times of reflection and self-learning, right? Yeah. Nailed it. I realized that I have been in denial about having anxiety my whole life. This is not something I can blame on the monster of MS. Maybe it’s more acute now since the brain-frying relapse, but it’s how I have always been.
I have always felt inherently unlikable. Fuck. There I said it. Not to be confused with the more pathetic, whiny ‘nobody likes me’. I have a very small but very powerful group of people who like me just fine.
It’s in the unfamiliar, unscripted moments where I do every thing I know how to be friendly, open, interested and engaged (it uses a spoon just thinking about it) and most often the vibe I get is… meh. Or, I’ll talk to you until someone more interesting comes along. Or, I’ll talk to you now like we’re connecting but later I won’t even remember that I talked to you.
The questions then become: Do other people feel this way? Is this just my anxiety? Paranoia? Or am I, in fact, unlikable?
Don’t answer that.
I got called a snob as a teenager because I was so ‘shy’. Truth was, I was this weird thing called an introvert but that wasn’t a recognized thing at the time, it was called being a snob, or anti-social. That’s partly why I started self-medicating early on with drugs and alcohol. Well, and it was the 80s – age of excess.
I have learned as an adult to manage that instinctive desire to hide and forced myself to put myself out there. Knowing everyone is just as self-absorbed as I am helps – I’ll call this Exhibit A, for reasons you’ll see later. But I still find it exhausting, as all hard-core introverts do.
Then, there’s the dwindling number of spoons from being out of my routine, and the sensory issues that make my body react to the chatter of mealtime in the cafeteria like that guy in the old Operation game, except for instead of my nose – that would be unfortunate – my whole body lights up inside. It all adds up to being a tad overwhelming.
So, my body goes into self-protection mode which means withdrawing and being seen as, guess what – anti-social. I don’t want to be the person that uses my disease as an excuse but at the same time it puts limits on me over which I have no control. How to explain that to a group of strangers? Answer: Exhibit A, no one cares because everyone has their own issues.
I have a history of feeling like everyone else understands something about the world and I never got the memo. I don’t mean the existential shit, I think I have as good of a grasp on that as anyone at my age. I mean the social, human stuff. It goes back to always feeling the outsider, feeling less than, needing to excuse myself for taking up space in the world.
I thought I had a better handle on it by now.
I found myself in that classroom, with all these amazing women discussing all sorts of interesting topics and the thought of speaking up had my body vibrating and tingling in all the wrong ways. Damn nervous system.
When I did manage to pluck up the courage to say something, most often I felt like a complete idiot. Red-faced, tear off my sweater before I spontaneously combust embarrassment. Even though – Exhibit A! Note to self: nobody gives a flying fart.
What the whole experience made me realize is that I have had undiagnosed anxiety my whole life that I have, and continue to manage with drugs* and alcohol. In a much healthier way now than in my teens obviously. Promise. Usually anyway. Major lifestyle changes and the coping strategies you can only learn through experience, not to mention an amazing family, all help too.
But it’s always there. Even in the most beautiful places.
That tingly, vibrating thing I mentioned above? That has completely invaded my body in a most annoying way as I’ve written this post, along with the tears coursing down my face. Anxiety fucking sucks. MS sucks. But, do I regret putting myself out there and trying something new? Never.
Do I regret putting this post out there, at the risk that someone answers ‘that’ question? That remains to be seen. 😉 If even one person can relate to just one part of what I’ve spilled here, it’s worth it.
Whenever I feel like things get too overwhelming, and I need to force myself into the present, I think ‘just put one foot in front of the other‘. Did you hear the song from the Santa Claus Is Coming To Town movie when you read that, or is it just me – the Christmas and musical geek? 🤓😊 Putting on my headphones and listening to music always helps too. Spotify is my new favourite app.
I would, of course, welcome any comments, answers, illuminations, wisdom, advice, input. More pictures below.
Have a wonderful week!
❤️ Amanda
Here are some articles you might find useful if, like me, you sometimes feel you were dropped here from another planet. My results from the anxiety assessment were surprising, and yet not.
*Cannabis aka marijuana aka weed aka pot aka ganja, etc is known as a tribal medicine for multiple sclerosis. Meaning MS was one of the first diseases to be recognized as gaining relief from its use. All I can say is I’m grateful that I’ve lived to see the day that it is legal and the medical community is finally starting to recognize the powerful benefits of this natural remedy. But that’s another post.
The garden at Hollyhock is stunning and provides many fresh ingredients for the delicious meals.
This quote, adapted from Alexander Pope, struck me as quite negative when I first saw it. Then I realized that it does not refer to those with no dreams or goals, but rather to those who are able to recognize that life doesn’t owe them anything, and that there is beauty and power in the moments when life switches direction or ends as you know it.
There is no roadmap to life. No guidebook, no manual, no training but the experience of living it. Holding tightly to expectations of how life will turn out is a recipe for bitter unhappiness. After almost five decades (say what?? 😱) of experience I have learned that flexibility, the ability to roll with the inevitable punches, is key to managing stress and finding happiness in our busy world.
When you have a chronic illness, there is a new layer to managing expectations. A large part of the learning curve is pacing yourself. You go from being able to handle a full-time job, all the responsibilities of being a parent and/or spouse, running a household, socializing, volunteering and anything else you feel like doing, to measuring out your spoons every day.
And that’s okay. There are many ways to live a life. The challenges and suffering in our lives are what build character, so even in the darkest moments we can try to be thankful for this crazy, magical life we’ve been given. Being present in your life, not dwelling on how you thought things would turn out, or worrying about what the future will bring, in short having no expectations but instead a huge amount of appreciation for the blessings of existence itself, leads to a beautiful life.
Easy? No, of course not. Worth it? Definitely.
Please watch the video below to hear an amazing perspective from a woman who was sick and dying her whole short life. RIP Claire Wineland. 💕💕💕
I’m off to my writing retreat this week. I’m really excited but freaking out a little bit. Okay, a lot. Update when I get back.
Back to school. Three words that can cause dread or excitement, depending on the person.
For some students, school is a happy place filled with friends, new experiences and the wonder of learning. For others, it’s an institution with rules to make them toe the line, to think and behave in a way that is unnatural to either the way they were born, the way they were raised, or both. Not to mention the social aspect that can be a major stumbling block for so many.
For some parents, the return to school is a welcome relief from either bored, whiny (not in our house, thank you) kids or from toting them to (not to mention paying for) various summer camps while they still have to work their full-time job. For others, back to school means unwelcome early mornings, too many forms and payments, stressed-out kids and the end of freedom from an overbooked schedule.
It’s not surprising that as a child, I loved going back to school since I eventually became a teacher. Having spent the majority of my life adhering to the school calendar, I always find September to be a reflective time, a time of new beginnings and renewal, hope and expectations for new goals set.
For me, it is a much more effective time to consider where I want to be a year from now, than the over-marketed dead-of-winter celebration of New Years Eve that most people I know don’t celebrate anymore. There is something about the cooling of the air after the heat of summer, new stationery (yes I’m geek 🤓), and even a few new duds (so not a shopper) that make me ready to set some manageable goals for the year/season ahead.
Everyone knows that the trick to succeeding at your goals is to not pick too many. There are a million things I could do to improve myself and my life, even though it’s already pretty fantastic. Like I said in my last post, pacing yourself is super important when you have a chronic illness. I also believe strongly in the KISS (keep it simple stupid) principle in all aspects of my life, especially because of brain fog. It’s all about priorities.
So, my simple and hopefully reachable goals for the next four months. Oh yeah, I like to do it short term because so much can change over a year and also – Christmas! 🎄☃️🎅🏻 I always start thinking about Christmas in September, because I’m a bit of a Christmas freak and I love to make crafts as gifts, much to the chagrin of my extended family. 🤣🤣🤣
Health – Being as active as possible.
1) Work my way up to 6 sun salutations at least 5 days a week. Currently, I’m at four several times a week but consistency is my problem.
2) Get my ass back to ballet class. I have to stick with the beginner class this time though. Last time, I went with the level of my (ancient) training, thinking that I would pace myself. Ha! I went too hard and burned out in a few months.
Work – Embrace my new career as a writer. I had to resist putting those two words in quotations. Getting there.
1) Write 5000 words a week until I finish this first draft, which I hope to have done long before Christmas. When I put it away to percolate for a while, I may haul out my first ‘accidental manuscript‘ and see if I can sort out the structure, now that I understand it a bit better. I’m hoping to get a lot of work done at the writing retreat I’m going to in 10 days – very excited about that! Also, sign up for NaNoWriMo in November.
2) Continue posting here, connecting with people and learning more about writing and the chronic and invisible illness community. I’m coming up on my 3 month anniversary of my first post, which is hard to believe. Best thing I’ve done in the last three years!
Personal – Pacing myself and connecting with others.
1) Continue to stay connected closely with my husband and children, regardless of how focussed we all may become on our individual projects. This goes for my extended family and friends too. I’m not great at in staying in touch with my outer circle on a regular basis but I have a wonderful, understanding support network that understands that, for which I am forever grateful.
2) Continue to reflect daily on everyone and everything I have to be thankful for. This is an easy one! 😊
So there we go, I’ve put my goals out there for all to see. If someone had told me I would be sharing myself publicly like this a year ago, I would have scoffed. They say it’s the best way to make yourself accountable, though. I’ll keep you posted!
What about you? What are your hopes, dreams, goals for the back to school new year?
Walk a Myelin* My Shoes 