Monthly Archives: January 2020

Sleep

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Sleep. It’s the most basic of functions. Everyone needs it, and everyone does it. We come out of the womb already knowing how to do it, and we do it until the day we die. It is a necessity of life, and unfortunately, I suck at it.

This little girl clearly has no issues sleeping!

Now to be fair, I was never really a superstar at sleeping. But I slept well for the amount of time I slept. I wasn’t the teenager who slept until noon (my dad would never have tolerated that!). But if I would have been allowed, I certainly could have accomplished it! I know what deep, sound, and restful sleep does for me (or anyone really), and I know how frustrating it is to never attain it. Of all the things MS has taken from me, I think I resent this the most.

Squiggy sleeps like a champ too!

So why don’t I sleep? First and foremost, it’s because of the incredible amount of pain I experience, particularly at night. As the day goes on, my legs get worse and worse. They ache so badly that it is very difficult for me to find a comfortable position, and usually it’s pretty short-lived. If I can’t find a position that works for me, I move to the recliner, then the couch, then back to bed. The cycle does not end. I never put together more than 2-3 hours of sleep at a time. I don’t wake up feeling rested because I’m not so sure how much deep (REM) sleep I get, especially since I can’t ever remember a single dream. I miss those crazy, vibrant dreams I used to have back in the day! Unfortunately, it’s during the deepest of sleep (studies have shown) that the body does the magic of regenerating cells that help to repair myelin. It has also been shown that chronic lack of sleep exacerbates MS symptoms. It’s a double whammy for me! I have tried every sleep aid (both prescription and OTC) and pain killer, so please don’t ask me if I have taken this, that, or the other thing. I manage with a combination of products and behaviors (such as yoga and meditation) that have helped me the most.

A regular yoga practice has done more for my ability to get good sleep than any pharmaceutical product or other remedy ever could.

Even more frustrating than the physical aspect of not sleeping, is the cerebral one. I hate nighttime. Every night when I get into bed, I wonder how many good hours I can put together. I think about where else I can sleep if I can’t find a comfortable position where I am. I have to consciously make an effort to NOT think about NOT sleeping. It’s exhausting to always be working  on getting out of my own head.

Meditation has changed me in so many ways, and I credit it for helping me through just about everything.
Photo credit: Jin at fotosforthefuture.com

As if all this isn’t brutal enough, the result on my waking hours is not so pleasant either. The less I sleep, the more off-balance I am. The less I sleep, the more my legs tremble. The less I sleep, the more I ache. The less I sleep, the more I forget words. The less I sleep, the more information I forget. The list goes on. The effects are cumulative and get worse as the day goes on. Inevitably, my body crashes to the point that I can’t move. It would be the perfect time to nap! But alas…

This is a normal occurrence and it feels great to just rest (even if I don’t sleep) surrounded by all this adorable love.

It’s not all bad though. I do some of my best thinking in the middle of the night! I watch bad TV, and text with other people who don’t sleep. I do a lot of online window-shopping, too. I plan great things during the wee hours of the night (or morning, actually), but most of these plans never come to fruition. I’m not exactly productive, but at least I find ways to pass the time. If you’re ever up for no good reason, try messaging me. The odds of me being awake are definitely in your favor!

Medications

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Have you ever done something so stupid that you couldn’t even figure out how, or why it could have happened? I mean something that goes against the daily routine that you’ve been keeping for years and years? This happened to me this past week, and I didn’t realize it until the damage had been done.

Like many chronic illness sufferers, I have a daily regimen of medications to help manage my most bothersome  MS symptoms. I have proudly cut out most of the pharmaceutical products I use, and only use the bare minimum. But I also am on a specialized program of natural supplements that have been prescribed to me through an integrative oncologist out of Portland, Oregon, who is helping me manage my post-cancer care naturally instead of with the poison endocrine therapy that the protocol for breast cancer dictates.

This is the basket of medications, but mostly supplements that I need for both my MS maintenance as well as post-cancer care.

Every three weeks, I diligently fill up my weekly pill containers, which have clearly labeled AM and PM holders for each day. As I fill up my containers, I make notes for any refills of the prescription medications that will need refills, as well as which supplements I will need to order. I have to say, I HATE this chore with a passion, but if I don’t do it, I’ll never take the meds appropriately. I used to do it every week, and then I decided that doing three weeks at a time is definitely better and gives me more advanced notice of anything I might be running low on. This has been my system for quite some time, and it has worked quite well for me… that is until this week.

I have 3 of these, and I fill them up every 3 weeks.

Every night at 9:15 pm, an alarm goes off on my phone, alerting me to take my nighttime medications. I do not require a morning alarm, since I take all my morning pills with breakfast, which I never skip. So on Thursday night, my alarm went off, and I got up to grab my pills, and proceeded to take them like the good patient I am.

I got into bed feeling particularly restless, which is not uncommon with MS-related “painsomnia”, in addition to the back spasms I’ve been having for four weeks now, which is also not uncommon when your spine has been fused. I gave myself two full hours in bed before I gave up and took myself to the couch. I often move around the house at night until I find the place where I am most comfortable.

So I settled in on the couch, TENS belt on my back, thinking now I’d rest. I waited and waited. Nothing. I started “window shopping” and even texting with some of my MS sisters who also happened to be awake. I didn’t realize how much time had gone by, until I looked at the clock and saw that it was already six AM and I had not slept even a wink. I’ve had plenty of rough nights whether MS, back problems, or even breast cancer was the culprit, but this was close to a record for me… and not exactly the kind of record to be proud of.

When I finally moved on Friday morning, I had to cancel everything I had planned for the day, because I was totally derailed. Being sleep deprived is cruel and wreaks havoc on the body of someone who has MS. I was shaky and unstable, and my balance while already compromised on a regular day, was so bad I could have been knocked over by a feather. I was so mad that my whole day was messed up and I couldn’t figure out what had happened the night before that would cause me to be so extra-restless.

As I proceeded to prepare my usual breakfast and take my morning pills, I finally realized that all of it was my fault. The night before, instead of taking my Thursday night pills, I took my Friday morning pills. For many this would not be a big deal. But because I suffer from crippling fatigue, one of the medications that remains a necessity for symptom-management is an extended release Adderall, which is basically an extremely controlled amphetamine, also known as an upper. The extended release means it is released into the body slowly and steadily, and should not be taken much later than 11 AM or noon to avoid conflicts with sleeping.

Here you can see that my Thursday PM is still full but my Friday AM is empty!

When I discovered that this was all self-inflicted I was so mad at myself. Never has this happened to me before, and I really can’t explain how it happened for the first time EVER. I TOTALLY messed up and I could not believe it. I mean, I’ve been doing this so long that I thought I could literally do it in my sleep 😆! But apparently I was wrong.

Luckily for me, this was a hard-learned lesson, and I know it won’t happen again because I hate “missing” days because every single one is a precious gift, and that is exactly what happened to me. While I can be aggravated that this happened and caused me to miss everything on my agenda on Friday, I am grateful that even though it was not a perfect day, it was still a day… and I learned a valuable lesson.

We all make mistakes… and I learned from this one, that’s for sure.

Resolutions

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It happens every year. People all over the world vow to make changes for the better in the upcoming year. The first thing people always ask at the the start of a new year is if you have any resolutions for yourself. Honestly speaking, I stopped making resolutions for myself years ago.

Celebrating a resolution-free New Year’s Eve with my other half.

Why wouldn’t I want to make resolutions to better myself each year? The reason I stopped was because many of the things I wanted to do were too easily derailed by circumstances beyond my control. It seemed that every time I made some progress on my resolutions, MS poked its mighty head in, reminding me that my body is no longer my own. As a goal-oriented person, I know that goals must be something to reach for, but that they always must be attainable. When I set a goal for myself, the perfectionist in me would never allow for failure. The result was a whole lot of self-disappointment when I failed.

It’s not a bad thing to have learned this though. I never wait until New Year’s Day to start something that I really want to achieve. Why wait for a new year to make self-improvements? I no longer make resolutions. Instead, I make just one promise to myself. I promise to be kind to myself. I have plenty of kindness for others, yet I do not treat myself well all the time. In my world, being kind to myself includes many things, all of which are important yet they are often difficult to remember.

Just. Be. Kind.

First, and most importantly, I promise to take it easy on myself. I can’t accomplish tasks and chores as easily as my able-bodied peers. My house may not always be the cleanest, my refrigerator may not always be fully stocked, and my “to-do” list may not always be finished. I promise that I will not be disappointed in myself when those things happen, but instead be understanding and know that tomorrow is another day.

No matter what I can or can not do, I am still enough!

Also, I promise to do things that make me feel good, both physically as well as emotionally. When I eat well, I feel well. I promise to feed my body with the proper fuel to keep it running to the best of its capacity. I will do everything in my power to practice yoga, meditate, and exercise daily, because staying strong and healthy is the only weapon I have at my disposal in this war against MS.

This is my happy place. Nothing else matters when I am on my yoga mat.

Finally, I promise to surround myself with people who are equally as optimistic as I am. I will not waste energy on people who are not supportive and understanding, or those who are judgmental of me, and the decisions I have made. I will not allow the negativity of others to affect me on my journey towards accepting this life of mine.

These are my people. They are members of my squad who always lift me up and surround me with positivity. #msfamily

If you have made New Year’s resolutions in the past, and you’ve been disappointed in yourself if you didn’t follow through, I urge you to re-evaluate your position like I did. Just make one promise: be kind to yourself. I promise you will not regret it.

 

Time

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Hello, faithful readers! I hope that you all had a peaceful holiday season spent with the ones you love! I’m back and as long as you all keep reading, I’ll keep writing. In the last several days I’ve been thinking about what to start this new year of blogging with, so here goes!

I’m not sure why this photo reminds me of the passage of time.. probably because the fog rolled in so slowly but before we knew it, it was thicker than pea soup!

Time. It’s a strange thing. When I was younger time seemed to move so slowly. Summers seemed to last forever, and I ached for time to speed up so I could be a “grown-up.” I don’t know why kids are always in such a rush to grow up, because looking back as an adult, I realize that life (although not without challenges) was a much simpler time. No responsibilities. Food on the table for me. Playing outside. Home by the time the street lights came on. Really not a care in the world. Children always want to grow up so that they make their own decisions and live the way they choose, without realizing the responsibilities that come along with adulthood.

Ahhh… the simple life! That white haired child is me when before I knew how hard adulting can be.

As an adult, I have never been one to wish away time, especially since I have had so many health battles and I don’t want to wish away precious days not knowing how many I have left. I’m not trying to be morbid, but those are thoughts that inevitably enter your mind, especially when you battle something like cancer (but that’s soooo 2017!).

25 years with this guy seems like it flew… but also at the same time it’s hard to believe it has been that long.

What’s truly amazing to me as an adult, the older I get, the more quickly time seems to go. But on the other hand, it’s almost elastic. For example, I’ve been living with Multiple Sclerosis for over 16 years, which seems like forever. But I remember the details of that time and it feels like it was just yesterday. How is it that it can feel so long yet so short at the same time?

My sweet nephew… i feel like he was just born, and now he is almost 5 years old and has full on conversations with me.

I’m not sure what the answer is… but I know this much: I treasure every single day that I am here no matter if it’s spent at the most amazing celebrations, or if it’s spent at home doing nothing. The idea of being fully present and appreciative has never been more on the forefront of my mind. This past year we suffered two major losses in the Rankin family. One was drawn out as 97 year-old grandma finally left her physical body. The other, the unexpected loss of my beloved father-in-law who at age 74 was young by today’s standards. Both of these losses taught me more than I could have thought possible about appreciating the time we spend with loved ones that much more.

Sometimes I look in the mirror and think “who is that old lady?” because I sure don’t feel old.

I never hesitate to tell my loved ones how much they mean to me, and now I do it all the more… maybe even to the point of being annoying, but I don’t care. This is how I want family and friends to remember our time together: sweetly, full of laughter, and never doubting the love we share. Love is such a basic human emotion, and whether it feels like just yesterday or if it feels like a gazillion years ago, time just makes love grow stronger as long as you are willing to nurture it and allow it to blossom.

I leave you with this quote to ponder, because I didn’t have appropriate words of my own:

“Time is the most undefinable yet paradoxical of things; the past is gone, the future is not come, and the present becomes the past, even while we attempt to define it.”

~ Charles Caleb Colton