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Health, MS, Partners/Caregivers

5 Tips: How to converse with a ‘foggy’

Brain fog causes issues with processing and comprehension. Here are some things to remember to help conversations flow more easily when you’re speaking to someone with brain fog.

Memory issues

1. Don’t change the subject.

It’s a very wavery tightrope to collect your thoughts and articulate them clearly when your brain is drowning in cotton. When you change the subject mid-conversation, often we can’t retrieve the original thought that just might have been world-altering.

2. Don’t ask questions until we’re finished speaking.

Again, any interruption throws the train off the tracks so even if you think being an attentive listener means asking questions, hold back. It can be a ridiculous feeling of success to process and articulate a complete thought when your brain doesn’t want to cooperate so please allow the time and space for that to happen, without interrupting.

3. Don’t talk to us when we’re trying to complete another task.

Multi-tasking is the gold standard for success these days, everyone is SO BUSY! Brain fog allows a person to only complete the simplest of tasks, one at a time. Please don’t try to chat if they are trying to cook or even tie their shoes. Every task takes so much mental (and physical) energy, it is impossible to split the focus.

4. Speak clearly and slowly, don’t mumble.

It takes as much effort to listen and process the message receiving information when Charlotte has spun her web so thoroughly in your noggin. Again, allow time and space for processing and for Pete’s sake, speak loudly and clearly. But not like we’re morons. Thanks.

5. Accept a grunt as a polite response.

Sometimes carrying on a conversation is more than we can handle. Don’t take it personally. It’s sort of like when toddlers ‘hit the wall’ – “Complete meltdown approaching, back away, BACK AWAY!”


Brain fog affects many people living with chronic illness. For many, it never goes away, it just changes in its severity. I hope these tips help your next conversation with a foggy to proceed without too many hiccups.

Do you have any tips to add? What is the most difficult aspect of conversing when you’re suffering from brain fog?

Thanks for stopping by! Have a great week!

May the spoons be ever in your favour

❤️ Amanda

life, Poetry

Endings

Endings, beginnings, life

Endings

Why are endings so hard?

We should be masters

Everything ends.

Baby

First the womb

Then the breast

Or bottle, depending

Diapers

Soother

Stroller

Midnight snuggles

Elementary

Innocent imagination

Friendship without agenda

Playing with toys

Middle

Budding breasts

First period

First boyfriend

Hormone fights

This is the end of the beginning.

High school

Independence

Attitude

Virginity???

First view of future

Twenties

High school without boundaries

Knowing everything without knowing you know nothing

Veil lifting

First job

First love

First orgasm – don’t lie

Marriage

Wedding- so much planning, over so fast

Honeymoon

First house

Children

Births – miraculous torture

First steps

First words

Preschool

School years

Empty nest

Sad freedom

First view of legacy

Nostalgia

It all went so fast

Retirement

Adventure, at first

Money, an issue

Health, sneaks up

Full circle

Decisions

Confusion

Hand over

The end.

Beginnings are endings. Endings are beginnings.

Endings, beginnings, life

❤️ Amanda

life, writing

Camp NaNoWriMo – Yay Me!

Toot toot! I normally only post once a week, but I had to share. Despite that crazy old gal Life tossing all sorts of obstacles in my way this month, I managed to succeed at the word count goal I set for myself for Camp Nanowrimo.

I had no idea how many words I would need to finish my current work in progress. That’s some weird writer science that writers can decide how long their project will be and actually hit that target. I’m still in the amoeba stage as a writer so I had no idea.

I wanted to set a manageable goal to increase my chances of success (lower that bar, baby!), so instead of the suggested goal of 50,000 words, I set mine for 30,000. I didn’t manage to write every day, and I had to pull a late-night writing sprint last night to give myself a real shot, but I did it.

I’m almost finished the first draft, and I’ve gotten into a more regular writing routine. I’m excited about the shape my project is taking and I’m motivated to get this puppy done by the end of August. That’s all I hoped to achieve and I have to say it feels pretty damn amazing!

Other exciting news that happened almost at the same time – I got my 150th follower! I had set a flexible goal of seeing if I could reach 150 by the end of the summer, to be there already made my day. Thanks incurable dreamer for making that happen! You should check out her blog, she shares some amazing posts.

Thank you so much to all my followers, anyone who reads a post, and those who take the time to comment. I was so afraid to dip my toes in this pool, and it’s the best thing I’ve done for myself in years. I have already met amazing people online that I consider friends and it’s cathartic to share this journey that used to be so isolating and lonely.

Mille mercis! Danke Schon! Muchas gracias!!!

❤️ Amanda

EDIT: Don’t ever hit the disconnect on your Facebook profile in your wordpress account, even though wordpress can no longer publish posts to your profile. I lost almost half my followers by doing that, and am slowly creeping my way back up. 😩

 

Health, life, MS

Anxiety : Depression’s partner-in-crime

Walking the tightrope of ms relapse prevention and symptom management while juggling life stress, heat intolerance, sensory overload, the ogre of depression and its craptastic partner-in-crime, anxiety.

We spent an incredible weekend in Vancouver, going to see the Psychedelic Furs, a band I started listening to in 1985, the year I met my husband. Nostalgia aside, they were maybe not the most exciting live band but we had a whole second show play out in front of us. It ended with a very eccentric, obnoxious man throwing his drink in his ex’s face, spraying all of us nearby. Oh, the drama.

Going to Vancouver usually stresses me out with all the traffic, the dreaded George Massey tunnel, the smells, the noise, the people everywhere. The chaotic energy of a big city is exhausting but it’s worth it to spend a night away watching live music with my husband.

This time traffic was mellow, even on a weekend at the height of summer. Everything fell into place beautifully everywhere we went so there was little stress and the monster was quiet so I felt pretty great, all things considered. Happy hour cocktails at the Cactus Club may have helped a bit, too. 🍹

Even the drive back out to the ferry, because we left the city early and went to check out the new mall, Tsawwassen Mills, was a fun, stress-free adventure. I’m not a mall rat and typically think a mall is a mall is a mall but they have done a very thoughtful job of incorporating First Nations artwork and unique elements that make walking around the ginormous space a mall experience unlike any I’ve had before.

First Nations metal wolf sculpture

Part of the joy of being an island-dweller is the hurry-up-and-wait experience of riding the ferry. I’m mostly patient and can amuse myself pretty easily but we all know how hot this summer has been in the northern hemisphere. Sitting in a truck on the end of a man-made jetty covered in concrete, full of metal cars and huge semi-trailers is a special kind of torture for every traveller.

Heat sensitivity is a common symptom of multiple sclerosis. Being the annoying mofo that it is, my body can tolerate heat or cold just fine most of the time. Until it suddenly can’t and all hell breaks loose. I think my thermostat’s broken.

So, my sweater is hanging off the sun visor shielding my body from the sun, doors and windows all open to catch the cool ocean breeze, all is well. Then the wind dies, the sun’s still beating down on me through the side window and a mushroom cloud of heat wafts up from the pavement.

Knock knock. Who’s there?

Hot, too hot.

Brain frying, can’t think

Panic starts, ears ringing.

Hello Anxiety.

Anxiety is another special gift the monster has given me in the last few years. It is closely related to depression in that they share the all-encompassing feeling of doom. The only thing that makes it controllable is knowing that it is a result of the damage in my brain, it is not real.

On the tarmac, I ended up going into the relative cool of the marketplace, to be faced with all the other overheated humans seeking relief.

Hello Sensory overload.

Tune it out. Blinders on. Focus on stationary objects.

Jewelry. Oh, pretty. Slowly inspect.

Cool down. Calm down.

Sea salt scrub. 50% off. Sure!

Hot, too many people.

Stuffy. Loud. Too much.

When I got back to the car, we had the bright idea of using the air-conditioning. Oh, sweet relief! I don’t love idling a car for any longer than necessary but when it comes to being either environmentally responsible or saving my brain and body from total meltdown, I will be unapologetically selfish. Please remember this if you’re tempted to judge someone for idling their car in the future. It can be a case of life or death for some people in this kind of heat.

People always worry about the dogs but, you know, humans.

Just after we boarded, a camper van got stuck partway on to the ferry, delaying the other cars and ultimately, our departure as they eventually had to back off the ramp. I could feel the spinny, bubbly feeling beginning again in my head that happens when my thermostat’s awry and I overheat. Then, anxiety prickled its knives that I was stuck in this hot car with no air moving for who knows how long and idling your car on the ferry isn’t an option, so no air conditioning.

Sensory overload or not, up I go just until the boat starts moving. Normally we stay in the car the whole time to avoid the crowds as I’ve always had enough after two days in Vancouver but again my thermostat was in control. I go up the stairs straight into the line-up already building for the buffet.

I quickly veer myself into the small hallway by the chief steward’s office and prop myself against a window, watching the hordes of people boarding and lining up. I try to enjoy the enthusiasm of the young Japanese tourists on a ferry for the first time. Their excitement is adorable and appreciated.

Then they swarm around me to look out the window and take pictures. Of the ugly piers.

Over my head.

Okay. Breathe.

They’re gone.

Another group.

Wait. Breathe. The ferry will be moving soon.

One window further over. Look out at the water.

See the diamonds dropped by the sun

Sparkling all over the water.

A bird, diving.

When will the boat move?

Look back at the growing noise.

Buffet line has sealed off my exit.

Swallow down the fear.

Irrational.

Line will move. Boat will move. Time will move.

Please move!!!

Breathe.

Just breathe.

I am only grappling with one tentacle of the octopus of anxiety. Many people are paralyzed in their lives, unable to function because they are crippled by the many facets of this mental monster. Yet again, there is still such a stigma about mental illness. I wanted to share a small glimpse into what the experience is like for me, just to open the discussion and share information to spread awareness.

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Thanks so much for stopping by. I always appreciate any comments or insights about my posts but if you’ve taken the time to read it at all, I am honoured, and I appreciate it so much.

Have a wonderful week!

❤️ Amanda

Health, life, MS

Not so sunshiny days- Depression and awareness

Depression

Last summer was the first time since adolescence that I experienced true depression. Luckily, this time I had the knowledge, wisdom and support to see it for what it was.

When I was a teenager at boarding school, I told nobody and suffered in silence until I acted out in despair and swallowed a handful of Tylenol. Nobody found out about that either. I wasn’t trying to kill myself, just trying to make the pain stop.

That phase was an exception, I consider myself blessed to be born with a generally happy disposition. As a child, the world was alive in my imagination; not only my dolls and teddy bears were alive but all living things fascinated me and talked to me. Seriously. Okay, I talked to them but I swear they talked back!

I still have the habit of talking to myself and objects around me. As a teacher, I would sometimes have parents waiting outside because they thought I was in a meeting when I was just having a grand old chat with myself. I usually have a smile on my face and I genuinely enjoy interacting with other people when I’m out in the world.

We all have days where we feel ‘blah’, the sky not so blue, the flowers not so bright. This is the necessary balance to life because if we don’t experience the lows, we can’t fully appreciate the highs. The idea of living in a utopia where nothing bad ever happens and everyone is happy all the time is appealing but unrealistic. It would be nice if we could tip the scales just a bit further in the positive direction somehow though, wouldn’t it?😉

Depression is an entirely different ogre. Depression sits in the pit of your stomach, chained to your heart, sucking all motivation and positivity from your thoughts.

Depression feels like you’re drowning in front of a crowd but no one can see you


Finding motivation and staying positive are constant challenges with any chronic illness already. The constant weight of fatigue multiplied by the pressure of depression starts to make me feel claustrophobic in my own body. Um…yeah.

I had not planned to post about depression this week, but IT’S BACK! The hard kernel of dread and doom has been festering there in my gut, as I’ve tried to control my stress, get lots of rest, eat well, exercise, meditate, communicate, blah, blah, BLAH. The cloud grows.

My question is this: why do my physical symptoms ease in the summer just for the mental monsters to come out to play? It would make more sense to get depressed in the winter when the skies are grey and the fatigue and nerve pain are at their worst. Easier to justify staying in bed with the covers pulled up to my chin then, too.

When the sun is shining, there are vegetables and plants to be tended, not to mention children(thank goodness they’re older), so guilt pokes out its claws too.

What’s there to be depressed about, for Pete’s sake? Stiff upper lip, role model, it’s okay to feel it but you still have to get on with life. All those negative inner voices that I usually scoff at, get amplified when this bugger shows up, too. Good times.

Does this happen to anyone else, this summertime depression?

Awareness

Depression is the most prevalent invisible illness in our modern world, affecting every echelon of society, yet the stigma remains. People suffer in silence and isolation and/or quietly accept the next prescription for anti-depressants, only admitting to their closest circle, if anyone, that they couldn’t handle the darkness anymore.

Depression is a common symptom of multiple sclerosis so it’s a double whammy of an invisible illness. I am fortunate to have a wonderful partner that wants to help and tries to understand what it’s like to live in my body. I feel the frustration of his helplessness that there really is nothing he can do beyond being the caring, attentive, goofy guy that he is. The best I can do is help him understand.

Analogies seem to be the most effective way to help people understand an experience they haven’t had. So, I started thinking about ways to describe depression. My depression, being usually (god, I hope so) short-lived, is the Lite version compared to what many experience day in, day out their whole lives. So I’m sure there are many better analogies out there, but these are the ones I came up with.

Depression is like:

– swallowing a cannonball that chains itself to your heart then leaks radioactive material that poisons your thoughts.

– alternately wanting to burst into tears, shriek at the sky or throw up every second even though your life is perfect.

– Voldemort sent all the Dementors inside your body where they are multiplying as they suck out your soul.

– you’ve woken in a nightmare and no matter how hard you slap yourself, you can’t wake up.

– being in a Dali painting, sliding off the surface of reality. For me, time is a huge factor because now that I’m not ‘working’, I see all the things that need doing, all the time, but my energy doesn’t measure up to my desire to get shit done. Then, depression sucks out the motivation too.

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– finding that patch of quicksand I searched for as a kid, wondering why I ever wanted to know what it felt like.

– stepping in shit, knowing that you’re standing in shit, seeing the clear path to get out of the shit, and not having enough fucks to give to bother.

– being Wile E. Coyote when the anvil ends up on his chest.

How do you describe depression?

Please share your thoughts and ideas in the comments, I’m sure there are many of you that have better analogies.

Helping other people understand using examples they can relate to is a simple way to build awareness and end the stigma.

And don’t forget the very important lesson of Eeyore:

Have a wonderful week, everyone! Thanks so much for stopping by!

❤️ Amanda