Published on The Mighty 6/3/2021
Often we have discussions about our medications, infusions, therapies, and all that modern medicine has to offer. The other side of the coin is how to be a team player in your own care. It becomes a second job, your own career, and your own “little voice” urging you to make the right choices. I, being an admitted candy and chocolate addict, sometimes turn tone-deaf to that voice. Yet, I manage to still live a healthier life than I ever have before. So there is always going to be a need for improvement. I now offer some tips that have personally helped me live a more quality life. Some of these help me to spend less time on my ADLs (activities of daily living) and more time enjoying the moments in life.
Starting first thing in the morning, I take my medications at about the same time every day. This gives me the best benefit of them. I have one med that can make my stomach upset, so I hold that one until I am eating my breakfast. I swore off taking meds with coffee! (Well, most of the time.) I swapped in cucumber water or some other infused mix that I have concocted for myself. I have a nice tall glass, and it not only helps the medications go down but gives my tummy a little cushion for the coming breakdown of those medications. It really can’t be said enough that water is one thing that most people don’t drink enough of. I am not a “plain” water girl, but most of the flavored stuff has crap in it which my very sick body doesn’t need, with the extra work of digesting it. So I infuse my own water. It’s super easy; just cut a cucumber, for example, and put it in a jug of water with a top filter. Stick it in the fridge overnight, and you have better than overpriced bottled water.
Youtube videos have become “a thing” since last summer. I started looking into diets and ways I could help myself feel better. I have some very rare and very debilitating diseases that have no cure. My science mind knows that a body in motion stays in motion. A body at rest, stays at rest, after spending over two years bedbound, depending on walkers, wheelchairs, oxygen machines, an array of medical equipment that had to accompany me everywhere in the world.
I wasn’t living, wasn’t happy, and to be honest, I was a real a-hole. I wasn’t a nice person. My way of dealing with all the hell that I was in was to lash out at everyone. Keeping others as far from me as possible. It’s a time in my life that I am not proud of, but am a better person for having lived through it. Now a two-time cancer survivor, I am thriving with my tamoxifen toxicity and rare neurological disorders. I am the healthiest sick person I know, and I take pride in saying that. I am a badass survivor. Here are a few more tips and tricks:
I try, but sometimes fail, to eat a good breakfast. I make up for it by eating a lot of raw fruits and vegetables all day long. I walk around with a baggie of carrot and celery sticks. Sometimes when I want candy, I grab the baggie or will grab a piece of my homemade challah bread. The theme here is to get back to basics. To eat and shop the perimeter of the grocery store. Most of the stuff in the middle is processed, and so it can actually make illnesses and disorders worse. After chatting with not only my providers but other patients, there is a consensus that an anti-inflammatory diet is best. One that is full of good fruits and veggies, fresh foods and yes you can have meat, good quality meat. I stopped being a cheap bastard with my groceries.
A while back I realized that my mindset was terrible. I would nickel and dime myself on things for me, even food, and save the money for “what ifs.” Well, I bought the cheap foods, the weeks of grocery shopping with a cart filled with crap. Processed, bleached, nasty filler, makes my nerves go insane, causing a terrible feeling of burning in my body. I was eating lousy and paying for it. In Europe, food is mostly bought on a daily basis. The Netherlands specifically has small, perfect grocery stores that have no need for large parking lots. Eating fresh food daily gives our bodies the needed fuel to enjoy more of our lives, thinking again back to the grocery store and shopping around the perimeter of it.
Along with the fuel I put into my body, I work very hard on my brain health. Being “happy” can in fact be a choice. Get mad at me if you will, but I hear you on all the reasons why you “can’t” be happy, or will only be happy when (insert here) happens. I call BS. I have real conversations in my head. I try to look at why I am upset and offer solutions that don’t hurt. In other words, I don’t have to be right. I don’t have to force you to hear me. I have to choose what I am doing and how I approach it. It’s a learned behavior for me, a conversation with myself no one is any the wiser to.
Here’s an example. I’m in front of the counter waiting for one of the pharmacy peeps to see me. You know it; you just wait for someone to look up and make the mistake of looking in your direction. Leaving them cornered to say, “can, I help you?” Meanwhile, I am the only one standing at the counter, why are they making me wait? Don’t they see me here? “Step back Jenny.” What do you REALLY see? Looks like there are only two of them and they both look stressed. I think they might be having a hard day. One habit of some of us “incurables” is humor. It’s about the only thing that gets me through the thousandth needle in my chest to access my port. My humor turns that into, “you gave a good needle,” a comment to my nurse whose day got a little brighter with a chuckle, and a ‘I made you smile” moment for me. I see those two pharmacy employees have sweat coming off of them. I realize that they have a lot to do, and it must be challenging.
When someone does come over, I give them a smile, and permission to be frazzled. Giving someone the chance to breathe and then face the next task can be the best gift you can give. Even better than a cup of coffee. I manage to find a silly joke in our transaction and leave them both smiling and laughing. The old me would have had an attitude of being upset at having to wait, and left them feeling shittier than when I walked in. It’s my choice. So yes, happiness is a choice.
I can’t do a lot of exercising but my insurance covers a membership. I take advantage of that by going to an indoor pool. Yup, I’m telling you to get wet. The BEST gift I gave myself in covid isolation was a way to get my mind and body moving. In the pool, my body can do more than it can on land. The buoyancy of the water helps me breathe easier, move easier, and get out of my own head easier. Simple walking steps in the low end get everything moving. I don’t push, and I do listen to my body. If I can swim a bit on my back, I do. If I can’t, I may just hold onto afloat and allow my legs to gently move me forward. Who cares how slow I am moving? The point is, I’m moving. I have a better range of motion in my limbs now and I have taught my body to be able to take more meaningful breaths that expand and exercise my lungs, diaphragm, and assistive muscles. Getting everything moving.
My best tip in the pool is meditation. There are many ways to do it, so I find one that is comfortable to me. Sometimes I use a float under my head on the edge of the low end of the pool. I let my legs float up and let go, as do my arms. I close my eyes and feel the water around me. I use earplugs to keep the water out. I start to box breathe and consciously think about counting each breath. I breathe into a state of relaxation, and in those moments a magical thing happens for me every time. I let go and float so my spine opens up, and all the pressure on my nerves and nerve damage let’s go for those moments. I can “float” my pain away.
Another way for me is that I go to the deep end in the corner of the pool. I put my arms out on the edge and hold myself, allowing my legs to drop straight down. Again I do the box breathing and let go, and have pain-free moments. I can last up to ten minutes at a time in pure peace, relaxation, and pain relief. I take that feeling with me and even use it in my mind to return to in moments of distress.
Of note, I chose to go to a pool that has a lifeguard. I know my body has things wrong that could put my life at risk in a pool. If I had access to a pool and no guard, I would try to get a buddy to swim with and be safe.
With a good diet, healthy hydration, and exercise, we help our medications work. We benefit our bodies while giving them healthy fuels. Gone are the days of eating frozen entrees, noodles of life, and prepackaged frozen so-called food. I have more energy and can enjoy my days. I don’t spend each day working toward basic things, and I have a system in place for the hard days. When I have a hard day, I allow myself to feel it and recognize it. We do ourselves a disservice when we attempt to put hard days out of our minds or be above them to benefit others more than ourselves. Living shouldn’t be for show. I allow myself to have days where some things have to be put off for another time. I don’t beat myself up or feel badly. I recognize it and respect it. I respect me more than I have ever done in the past, and it has made all the difference.