“In sickness and in health, ‘till death due us part.”
The all-so-famous line in many people’s wedding vows … including ours.
When you’re in your 20’s or 30’s would you ever imagine having these ten words transpire into reality? Like most people, we surely didn’t imagine what was to come four years after making this promise to each other.
Going through an illness can make or break a relationship, vows either crumble with disease, or grow stronger and cement themselves into the bond you share with each other.
We knew something was wrong, something had rooted itself so deep into my body and no one had the answer. All we knew is that my days were consumed with pain so surreal there are no words to describe it, fevers, body spasms, and the inability to lift my legs, arms, head – not being able to sit up on my own, walk through the house or brush my teeth. It was pretty clear that I was sick, yet no one knew how to help us.
You sometimes hear of illness slowly dissolving relationships; I don’t speak from experience but having to be a care-taker, earn the only income, cook and clean while watching the one you love in excruciating pain can take a very real physical, mental and emotional toll on both people and their relationship. Care-giver “burn out” is very real – when I started losing my independence I often worried it would become too much for my husband, that I would start to become a burden. When I’d ask he always assured me with a laugh that he “won’t go anywhere” – and he hasn’t. That also didn’t stop me from trying to do everything myself for the first couple of months; I had always been so independent – and if that meant crawling up the stairs? You bet I did it. Many times (and sometimes I still have to).
I’ve often wondered how different this would look if we’d only known each other a couple of years? I’m 30 years old and just a few months ago we celebrated being together for 14 years, it is safe to say we’re in that “seen it all” stage of our relationship. I’ve often thought how embarrassed I might have felt if this happened 10 years ago? The things he has had to see and do because of this illness is far beyond what I would have ever imagined.
With my current treatment protocol I’ve been very sick. The last few months has been the worst I’ve felt throughout the whole treatment process, partly due to “herxing” (you can read more about my med weeks in another blog post by clicking here.) While I’m on meds I get very sick, literally sick – I’ve lost count of how many times I’ve vomited. Beyond this, somehow we still laugh, even while it is happening. You wouldn’t imagine the conversations you’ll have when puking becomes normal.
“Relax, take a break!”
“You’re scaring me!”
“How is there that much?!”
“You’re the worst puker I’ve ever seen.”
“Don’t throw Kleenex into the toilet!”
“What is that? No.. that dark chunk?”
“Stop looking! I don’t want to look at it!”
(To be honest, I don’t say much. I make whimpering noises mixed with a few tears)
So … you see, it can be funny if you’re willing to let it go (no pun intended) and just try to accept the situation. Of course I would rather vomit in private, but that just isn’t possible when you wake up at 3am and barely manage to grab the trash can.
Just because we’re finding the humor in it doesn’t mean others do. Part of the reason I’m writing this is for the people out there googling “Lyme Disease”, trying to learn more and navigate their way through this unimaginable world that definitely does not come with a handbook. This isn’t just related to Lyme either, illness comes in many forms and affects many people. For those who are struggling, I hope these blog posts help you, even in the smallest way.
I belong to a few Lyme Disease groups online. I read stories of people feeling that their spouse isn’t supporting them, and the reasons and explanations are vastly different. In truth, I had to back away from these groups… they can be a huge help at times, but can also be very emotionally and mentally draining. Here are a few things I’ve learnt about relationships along the way…
Some Lyme suffers carry a negative energy; and while there are days where no one would judge you for this (we’re going through A LOT) – it is important to find the light through the darkness. Many people with Lyme hold onto anger; they are angry with doctors, policy, government and lack of empathy. They’re angry that this happened to them, wondering “why me?”. They’re pulled too thin, as if the symptoms they’re experiencing aren’t enough, they’re likely spending all of their savings trying to find and pay for treatment – and they are too sick to work, many unable to successfully claim any disability insurance. They stop earning a living and feel like they’re barely alive. They’ve lost their sense of safety and stability in life, and they often feel like they’re lost their purpose.
Does this sound negative? Yep, because it is.
Do I know how this feels? Absolutely. The last few months have been the most trying, testing, tearful months I’ve experienced in the last three years of being sick. I’ve had all of these thoughts and felt these emotions, but it is so important to let go of the anger in order to heal and move forward.
Have you ever noticed when your angry or upset, it’s easiest to take it out on those closest to us? We project that anger onto our family or spouse. You know it isn’t right, but it happens. If all of this sounds familiar, it is definitely time to try to find the light again. No one wants to be around someone who is sad and angry all of the time. There are many ways to move out of this phase, each is unique to the individual. I’ve always been a “glass half full” kind of person, but if you’re struggling – find a safe place to talk or write about it. When you can start letting things go, you’ll start to see the silver lining and allow positivity back into your life and in turn, relationship.
Don’t resent your spouse. I’ve read how people feel like they’ve been ‘forgotten’. Every situation is unique. Often besides being a caregiver, our spouses are the sole income earners in our households. This often means working harder and longer, they’re sacrificing a lot too and it is important to remember, respect and appreciate this. They haven’t forgotten about you.
Encourage them to have their own life. You might feel a little resentment over this while your stuck in bed – but … They need a break. It is important to note that while we don’t get a break, we live in this 24 hours a day, 7 days a week… in their heart and their mind they live this 24/7 too. It is important to encourage breaks, as hard as it may seem, we’ve made this work by planning around the times that I’d usually be sleeping. Around 7pm I would get ready for bed, go pee one last time, and Stephen would set the bedside table up with all the things I might need while he is away: lip chap, water, the iPad for watching Netflix, pain killers, and most importantly – my cell phone within reach. He assured me he’d be a phone call away, and to call if I needed anything. I’d be ok for a couple hours and he would get a break.
When I first lost my strength and ability to sit up, we invested in an adjustable, hospital-style bed. If this is something you can afford, it allows for a bit more independence. Instead of relying on Stephen to sit me up, I could lift the head of the bed until I was upright. A bed-side table is also a huge help. There are also many assisted living devices that are really useful… another one that was really great for me was a raised toilet seat (yep… just like the one my great gram used to have!). Our dog, Elliot, is a Great Dane – his size and weight has allowed him to be helpful in getting me off the couch; he would allow me to hold on around his neck and pull me up so I could stand easier. I even found my yoga strap came in handy for moving my legs when I was alone. There is nothing wrong with being creative.
Laugh. Laugh even when it’s not something to laugh at. The first time Stephen had to brush my teeth, midway through we started laughing – after I spit out the toothpaste, I looked at him and said “well, that’s a first…”
The first time I wasn’t able to stand up on my own was scary. My brain and my legs didn’t communicate anymore. It was January 20, 2016 at 9pm. Stephen was working late trying to get a job done for a customer/friend, I called him and he was home right away. I went to bed that night wondering if I’d wake up and be able to walk again. If you live with Lyme, you might know that this can come and go. Some people end up completely losing the ability, but for others like me it waxes and wanes, so we’ll only need a wheelchair from time-to-time. I’ve heard of some people calling this “tick-paralysis” – though I’m not too sure that is the medical term for it.
Soon we realized this was just part of my new “normal”. One night Stephen was making dinner, so he sat a chair in the kitchen so I could be in there with him and we could chat while he cooked. As I sat there I started laughing, in turn – so did he. We were reading each others thoughts… I laughed and said, “what he f**k happened to our life?”. I know this isn’t funny and I don’t mean offence to anyone, but what else could we do? Be afraid? Be angry? Cry? What good would come of it? So laugh, and if you can’t laugh at yourself – watch the funniest movies you can find (thank you Trevor for all of the great movies!). Laughter is great medicine.
Throw embarrassment out the door.
Sickness hasn’t broken us; it’s made us stronger. Death hasn’t parted us but it has threatened us – making our bond grow stronger and love grow deeper. There is always a silver-lining in every situation.
(As time goes on I find it harder to come up with ideas to write about, so please- if you have any suggestions or want to know more about something, leave me a comment below or click on “Contact” at the top of the page and shoot me an email)