If you’ve followed my writing for a while, or have read my book, I’m sure by now that you have heard me mention my wonderful wife Megan.
She’s been with me throughout my entire journey with Meniere’s disease and plays a big role in my story. I really don’t know what I would have done without her!
So for today’s post, I have a special treat for you all! After much prodding and encouragement, Megan has finally written a post for Mind Over Meniere’s to share her thoughts from the perspective of a loving caregiver. I hope you all enjoy her post and I encourage you to share it with your friends and family! So without further ado, here’s Megan!
(P.S. if you like her post, let her know in the comments below! We just might be able to get her to come back and write some more.)
So, what’s it like being married to a minor Meniere’s celebrity?
Well, it’s not as glamorous as you might think. In all seriousness, witnessing and being a part of Glenn’s journey with Meniere’s disease has been a struggle, a victory, and a rollercoaster ride.
If you are reading this, you probably know about all of the different strategies and methods that Glenn uses to battle his condition every day. I take no credit for his successes, but I do recognize (and I hope he does, too!) that having a supportive partner can make a huge difference when overcoming the day to day struggles of Meniere’s disease and other chronic illnesses.
So I wanted to take a moment to talk to not just the Meniere’s sufferers, but to all the caregivers, partners, spouses, children, parents, siblings, friends, and neighbors that support a loved one with Chronic illness. Here are a few things that I do on a regular basis to support Glenn. I hope they prove useful to you and your loved one, too!
(As stated above, I know that supporters come from all different areas of our lives. For ease of writing, I will refer to Glenn as my “partner” below and myself as his “supporter”. Insert your term as needed.)
Don’t take it personally:
When Glenn was diagnosed, we were still early in our relationship. We had been dating for about a year, and we were in our early 20’s.
Our regular activities reflected this youth. We stayed up late, went out at night, ate whatever we wanted, went on rollercoasters and boat rides whenever we could, and generally didn’t think about consequences. We just lived for the here-and-now.
Meniere’s disease changed that quickly and without warning. I admit: it can be hard when I want to do something with Glenn that he cannot handle. It’s hard when he doesn’t remember something I told him earlier because of brain fog and I have to repeat myself… and it’s especially hard when he isn’t feeling well and there is nothing I can do to help.
But my mantra above all is: “This is not about me. This is not personal.”
We know that our partners have limitations, and we know that pushing them too hard can be detrimental to their health and well-being. We know that they will have good days and not-so-good days. So it’s important that we see this for what it is and take it at face value.
“Wherever you are, be there totally.” – Eckhart Tolle
It’s when I start thinking of something I wish we could do together, but can’t, that I find myself resenting the illness. So it’s important for me to remember to focus on today, not tomorrow. Tomorrow, he may be up for a nature walk, but today he is not. That doesn’t mean that he doesn’t want to spend time with me. Easier said than done, but something that supporters should keep in mind.
You know more than you think you do:
When Glenn created a tool to help himself find his triggers, I thought it was a great idea! Anything that might help him figure out what was causing him trouble, whether in the environment, his diet, sleep, stress, or other factors, was a good thing.
But his tool can be just as valuable to a supporter. We have all seen it play out in our personal lives – you cannot always see the truth about yourself the way someone else does. This is not to say that our partners don’t want to figure out what triggers them, but it can be easier for someone with an outside (or somewhat outside) perspective to see a pattern that has been lurking in the background. And two heads are better than one.
For Glenn, it’s important that he considers his behaviors and activities for multiple days at a time. Generally, after a busy weekend, he won’t feel well for several days. But he doesn’t always connect the two right away. So I try to point it out for him and once he sees the pattern, he can make sure to rest and recuperate, rather than fight his way through.
“The truth is we’re all a little bit broken. We must learn to love the broken pieces of ourselves – be gentle and empathetic with ourselves, and others.” – Karen Salmansohn
Supporters – if your partner has been recently diagnosed with Meniere’s disease, I urge you to download Glenn’s Trigger Tool and have your partner fill it out each day. Your partner should analyze this information, and so should you.
It’s important that you both continue this practice periodically, because triggers have a tendency to fluctuate over time. Your partner’s triggers may not change, but there are times when not getting enough sleep bothers Glenn more than others. And there are certain times when stress causes his symptoms to flare up more than others.
Be an active participant in this research – and don’t be afraid to voice your opinion. Your suggestion may lead to a lightbulb moment!
Cheerleader and Supporter above all:
Glenn has written extensively about his ups and downs with Meniere’s disease.
And I feel like it’s important to celebrate success and to recognize adversity when supporting a loved one with a chronic illness. Most of the time my primary purpose is to be a cheerleader. When Glenn takes a risk and reaches a new height, I try to celebrate with him.
You may be thinking, “Why are you telling me this? Don’t all husbands/wives/family members celebrate the victories of their loved ones?” Yes, they do, especially when it’s something like a promotion or a graduation, or a completing a marathon.
But what about celebrating a day out in the sun? Or having the courage to try a new restaurant or food that your partner hasn’t tried before? Or taking on a part-time or volunteer job? Or sometimes even just a walk around the block?
These are victories for our partners, and we may take these actions for granted. But it is important that we try to celebrate these moments, and encourage our loved ones to continue to strive for more.
“Those you love will go through hard times. Don’t give up on them. Patience + Caring + Empathy = Love.” – Unknown
The byline of Glenn’s book is “How I conquered Meniere’s disease and learned to thrive”. When I think of “conquering”, it conjures up an image of a hard-won battle. What a fitting description for chronic illness: it isn’t something that you figure out on day one. There are wins and losses. Our partners need our support for both!
It is in our nature to comfort and nurture our partners when they have a bad day so they have the strength to try again tomorrow. We should support them and celebrate with them on a good day, too, and encourage them to keep going.
I will be the first to tell you that it isn’t always easy to support a loved one with Chronic Illness. We want them to be happy and healthy, and sometimes there is nothing we can do but hold their hand and be there with them in the struggle.
But I know that my support matters, and I can make a difference and an impact for Glenn as he continues to fight his battles. I won’t take it personally, I’ll be the supporter, I’ll be the cheerleader. And together, we will continue to learn to thrive.