View of the beach emerging from the private trail from our campsite. Photo: M. Cockayne
I am so incredibly fortunate to live on Vancouver Island. As I said in my last post, I was off camping last week at Pachena Bay Campground which is on the west coast near Bamfield, BC. The drive is an adventure in itself, two and half hours on dusty, bumpy logging roads from Port Alberni. Every teeth-chattering, slow-going minute is worth it once you arrive, though.
As it turned out, the first day was the nicest weather we had so it wasn’t exactly the tropical vacation we hoped for. When you’re camping in a coastal temperate rainforest, you take your chances. Instead of sweltering in the heat wave the rest of the island and most of North America it seems, was suffering, we were in our layers of fleece, toques and rain jackets. Like most MSers, I’d rather a bit of fog, wind and misty rain than having the carnival of symptoms start when my body temperature rises.
Change in the weather, the fog rolls in.Fog is a regular occurrence but often blows off later in the afternoon or early evening.
When the tide is out, the enormous beach triples in size, impossible to capture in a photo. One day, we walked far out along the beach exploring tide pools towards the beginning of The West Coast Trail. We were going to walk a bit of the trail until we got to some of the ladders, which we have done in the past. Almost there, I looked down and saw this:
Would you turn around or take your chances? Photo: M.Cockayne
The beautiful patterns in the sand with the fresh bear tracks leading away made the moment magical. And sped up our pace on the way back! Photo: M. Cockayne
We knew we were in bear and cougar country but seeing fresh evidence that we were right on the heels of Baloo? Yes, we turned around and headed back towards the main beach. ☺️ (Photo credits to Miranda Cockayne as my dinosaur of an iPhone died.)
Four days and nights of living in the forest, sharing secrets and too many laughs with one of my longest (not oldest, see what I did there? 😉) and dearest friends, building fires on the beach, watching the ospreys and eagles diving into the ocean, unplugging from the world (for the most part, they have wifi at the main office now), and plugging into the inspiration I always feel when I remove myself from the manmade and reconnect with the natural world.
It’s even worth the week of recovery from not sleeping and just being out of my usual routine. No matter how careful I am about eating well and hydrating, I never sleep well when camping or away from my own bed, actually. Are other MSers and chronically ill people the same? Does a change in your routine inevitably exacerbate your symptoms?
One thing I will make sure we do next year, is go on a Kiixin Tour.
“Kiix̣in is the site of a 19th-century village and fortress that exhibits evidence of occupation dating to 1000 B.C.E. Today, it remains a sacred site to the present-day Huu-ay-aht First Nations.”
This is my camping partner-in-crime from our trip in 2015.
On the west coast of Vancouver Island, this is my favourite place in the world. Like many people, any beach immediately relieves my stress and clears my head. It can be difficult for people with mobility issues to enjoy the beach or get out in nature, but a daily dose of connection with our natural world is what’s missing from many people’s lives as we become more isolated in our screen-centred world. The increase in depression and anxiety, especially in teens, is not a coincidence.
Meditation is a buzzword these days, for good reason. The world is busy and hyper-connected in a mostly superficial way through social media. Studies have shown that daily meditation can help with depression, and depression is a common symptom of MS. There are some great meditation apps out there but for me, the easiest form of meditation is staring at nature.
Often I’ll drive to the beach and just sit in my car, windows down, to hear the soothing rhythm of the waves. In my backyard, just watching the bees bumble from flower to flower stills my mind and lifts my spirits. On bed-bound days, I look out the window and watch the leaves rustling in the wind, imagining the energy of nature infusing my body. Still waiting for that one to work. 😏 SimplyWendi shared a fantastic list of live webcams over at Simply Chronically Ill; https://simplychronicallyill.com/2018/06/15/some-of-my-favorite-live-webcams/ Thanks, Wendi! When all else fails, there is Google Earth!
Meditation doesn’t have to be a structured event, unless that’s how you groove. The important thing is to give your mind a break from worrying about the infinite details of daily life. Obviously chronic pain and illness adds a whole other element to the equation. It’s difficult to focus on something else when your nervous system is lit up like the tree at Rockefeller Center, but that’s why it’s even more important to train your mind to focus on the beauty of nature.
Happily, I’m on an upward swing on the roller coaster at the moment so I’m really looking forward to camping for four days. I was nervous to camp for a couple of years after diagnosis, worried that something would happen when I was in the middle of nowhere. Three years on and I’m more familiar with the daily onslaught of varying symptoms. I can’t live my life in fear of a relapse, time marches on regardless and I have adventures calling me.
I want to talk about the journey to ms diagnosis. For some, the trip is brutally short. Bam! They wake up and their whole left side is paralyzed, or they’re blind in one eye. Terrifying. No question that any person would head to the hospital, or at least the doctor and they would be taken seriously.
Usually, a trip to the ER would mean an MRI, possible lumbar puncture (sooo glad I avoided that!) and subsequent diagnosis of multiple sclerosis. Some get picky and call it CIS (clinically isolated syndrome) until the monster rears its ugly head again, hence the multiple in multiple sclerosis.
I suspect many people in this position start connecting the dots of other strange symptoms they’ve had for years, once the inciting incident of the diagnosis journey appears, with the exception of those diagnosed very young, of course. I can’t really speak to that though, because that was not my journey.
What about those who present with weird virus-y symptoms?
The first episode of fatigue, brain fog and vertigo when I was 22, had me sleeping in the back of my orange Westfalia on the streets of Puebla, Mexico, alone, peeing in the sink for three days. I figured it was a strange Mexican virus – thankfully not from Montezuma!
The second incident two years later, in Lagos, Portugal, I was stuck in a tent in a cinderblock wall campground, with stereos blaring on every side, peeing (sometimes unsuccessfully) in bottles, in front of my boyfriend. I knew then he was a keeper! 😊💕 Okay, bladder issues are certainly an ms symptom but enough about urine!
A couple of months before my first relapse. I sold the van to my brother. He never knew this story. Sorry dude! 😬
I had one more relapse the following year, during my final teaching practicum. The monster’s timing is exquisite. The doctors that I saw during these times, in the early 1990s, checked for parasites and infections because of the travelling link but when they found nothing, they shrugged and pushed me out the door.
Then, the monster slept. With the exception of some ear-splitting tinnitus when we lived in New Zealand which was ascribed to stress (believable as we were living on a student’s income halfway around the world with a newborn), I had no relapses for about 13 years.
After the birth of our third child and subsequently returning to work part-time, I started having these weird ‘blips’, that I again thought was a virus. Pretty soon, I realized it was hitting me every six months or so, knocking me out for longer each time.
There was no paralysis. No blindness. No alarming symptoms that justified an emergency room visit. Just an exhaustion that felt like the power of gravity had increased ten thousandfold, a weird bubbly feeling in my head and an all over body ache that made me feel like I’d been poisoned.
I saw so many doctors during this time, and every single one of them listened to my symptoms, frowned, shrugged and told me to stop working so hard. Or maybe I was depressed. Or it was just a virus. Or it was idiopathic. That last word, meaning ‘they just can’t figure it the hell out’ was said by a very tall, male doctor looming over me in his office, forcing me to crane my neck to look up at him. The subtext of his message was ‘get over it, lady’.
Two problems
I have two problems with this. First, the number one symptom of ms is fatigue, which was my number one symptom. Also, I live in Canada which has one of the highest rates of ms in the world (MS Society of Canada estimates 1 in 340 people), yet NOT ONE of the 15-20 doctors I saw ever mentioned it.
I don’t think this is solely an issue related to the difficulty of diagnosing multiple sclerosis because it is such a misunderstood, unpredictable, individual disease. It’s a women’s health issue generally. I have heard so many stories about women’s health concerns being dismissed or downplayed or worse, drugged by overworked, distracted doctors.
Why is this? Do doctors really think women have nothing better to do than come to their office to ‘whine’ about something that’s ‘all in their head’? I’ve gotten equally dismissive treatment from both men and women doctors, so it’s not a patriarchal problem. It’s as though those that enter the hallowed halls of physician-dom are doomed to condescend to women, believing they’re choosing to spend their lives pretending to feel like shit, just to get attention.
I never watched the Golden Girls, but this clip explains it brilliantly.
You go, Bea! I would like to go back and have it out with some of the doctors who made me feel ashamed and ridiculous for pursuing answers when I knew something was wrong.
Conclusion
I am sharing my personal diagnosis story today because awareness is still so lacking about this ugly disease, despite how common it is. When I was undiagnosed, I searched all over the internet for people sharing stories like mine and found very, very few. Also, I think women need to support each other in managing their health, and that starts with conversation.
If you or anyone you know is experiencing strange symptoms, don’t ignore them. Advocate for yourself, you know your body better than anyone else can. Don’t let doctors blow you off and don’t stop searching until you get the answers you need.
Doctors hate it when you use ‘Dr. Google’, and you do have to be really, really careful. But until we sort out a healthcare system where doctors aren’t working on an assembly line, it seems to be the most knowledgeable, and least condescending doctor around. No offence to any of the doctors out there with integrity, I just haven’t met any of you.
Do you have a crazy diagnosis story? Please share, I’d love to hear from you.
❤️ Amanda
By the way, it was a naturopath that finally listened to my story and first mentioned the words multiple sclerosis. I was finally diagnosed 23 years after my first relapse.
First of all, I have to acknowledge the overwhelming positive support I got for my last post from my various ms ‘families’. For an introvert that overanalyses every social interaction (yeah, I think they call that social anxiety 🤔 ), it took me a long time to put myself out in cyber world and open myself to potential criticism. Not that I expect rave reviews, constructive feedback is always welcome. But we all know that feeling of ‘what if everybody hates it?’ Right? Everybody feels that, right? 😉
Anyway, thank you to everybody who clicked and read and commented! I am astounded at the support and encouragement, and so grateful to be a member of such amazing, caring groups.
This is a poem I wrote when I was amping myself up to share my writing. Fear is another of those emotions, like guilt, that many of us try to ignore or fight against. There is a tendency to distract ourselves from the ‘negative’ emotions in life but when we face them head on they provide the counterbalance to the positive emotions we all strive for. You can’t have one without the other.
While fear is a universal emotion, it develops a particularly strong flavour when one receives a diagnosis of multiple sclerosis. Being told you have an incurable neurodegenerative disease, that nobody knows what causes it and there is no way to predict what damage will be inflicted on your body, introduces a whole new level of trepidation. Add to that the daily adventure of never knowing what symptoms might crop up to stop you or slow you down, and the accumulation of disabilities that strip away the identity you have built up over years or decades, and the fear can be paralysing.
I’m coming up on the third anniversary (that so does not seem the right word) of my diagnosis. Three years since I left the classroom. Three years coming to terms with my new normal, trying to heal and to carve a new identity for myself. I realize now that fear was the main thing holding me back from moving on to a new chapter. It’s still there, making my palms sweat as I type this, imagining putting out another piece of myself. But I will face the fear, because if there is one thing I have learned over the past three years, stagnating is not an option and pushing through the fear is the only way to get to the light.
Since I just started this blog, I was planning to start with a more introductory post but I’ve noticed a disturbing trend in many of the facebook ms support groups I belong to and I think it’s a topic worth discussing. Every day, I see at least two or three stories about partners (and sorry guys, but it’s predominantly husbands) bailing out post-diagnosis. Apparently for some people, ms is a deal-breaker of the ‘in sickness and in health’ part of the marriage vows.
I kind of get it from this side of the fence. Standing by while you watch the person you love struggle daily, losing basic abilities, fighting through pain and fatigue, never sure what further deterioration the future may hold, must be terrifying. When the nerve pain is so bad that nothing can touch it, and the slightest touch is like knives or fire so you can’t even comfort with a hug, must be a special kind of helpless feeling. The mood swings that transform your partner from Jekyll to Hyde to a blubbering puddle on the floor, the sensory overload that makes it difficult to be in busy places without shaking like the Great San Francisco earthquake, the bladder and bowel issues that make any out trip a potential disaster, the list goes on and on.
Some people just don’t have what it takes to be an ms partner. Neurologists have told their patients that the partner fleeing is quite a common phenomenon. Believe me, if I could, I’d run from this bugger too. But I don’t want to focus on the cowards that can’t handle the reality of the monster. I want to celebrate those that have the backbone to stand by their partner as support in whatever way is manageable for whatever weird symptoms crop up on a daily basis. Are they perfect? No, of course not. They don’t always say or do or react in the ‘right’ way. Nobody does. But they stay. They fight the fight alongside and even in the silence of the dark bedroom when you’re drowning in the fatigue tsunami and can’t hold a conversation, you know they’ve got your back.
It’s a delicate balance for both sides. The ms warrior wants to maintain independence as much as possible, the partner wants to help but also respect their partner’s dignity. The warrior pretends to be fine, not wanting to complain or explain the latest in the list of symptoms, the partner sees when things are getting too much and takes over a larger chunk of life’s daily chores. The two things that make it work, when it does, and this applies to all marriages really, are RESPECT and GRATITUDE.
It is inconceivable to me when I hear people say that their partners call them lazy or think they’re faking their ms. I do understand that ‘you don’t get it until you get it’. People cannot possibly understand the power of the fatigue that comes with being chronically ill (especially those assholes who claim to be just as tired), and I wouldn’t wish it on my worst enemy. Not even the doctor who told me my symptoms were ‘just a virus’, but that’s another story. Respect means that even if you can’t imagine what your partner is going through, you believe them innately when they say they can’t do any more. It also means not expecting that caregiver to do things in exactly in the same way you might, which was/is a difficult one for me to manage. 😬
The old saying is ‘love makes the world go around’. While I believe that’s true, it’s gratitude that makes that love continue to grow within a marriage. When two people are genuinely grateful for the other person’s existence and how their partnership improves their life, the love can only grow deeper and richer. One of my life mottoes is ‘it’s all about perspective’. I can choose to focus on the negative things in my life or the annoying things my partner does. I can whine that he doesn’t say just the right thing when I’m in a mood, or stack the dishwasher properly. Or I can filter the focus through the lens of respect and gratitude, recognizing that it can’t be easy to be riding on the ms rollercoaster with me. He never bought a ticket but he’s holding on tight, ready to take the corners and dips and loops by my side. I couldn’t be more grateful or have more respect for anyone.
Respect and gratitude to all the amazing partners who are fighting not fleeing!
The beautiful patterns in the sand with the fresh bear tracks leading away made the moment magical. And sped up our pace on the way back! Photo: M. Cockayne
Walk a Myelin* My Shoes 