Category: Partners/Caregivers

chronic illness, life, Partners/Caregivers, Quotes

The Ones Who Stay

Amanda, walkamyelinmyshoes

Wedding, love, commitment, relationships

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:

Health, MS, Partners/Caregivers

5 Tips: How to converse with a ‘foggy’

Amanda, walkamyelinmyshoes

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

Partners/Caregivers

Shoutout to partners!

Amanda, walkamyelinmyshoes

Happy Monday!

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!