I have been living with MS and a long list of autoimmune diseases for over 40 years. I have been an educator, but I also know that we never stop learning. This is not only by our own experiences, but also by the experiences and knowledge of others. My dear friend Patty Long shared with me her list of rules she lives by, and has graciously agreed to share them with everyone.
These are the rules I live by. Those I created for myself along my roller coaster ride with MS, a Meningioma (a non cancerous tumor that grew quite large and was removed 8/24/2017) another autoimmune disease, Undifferentiated Mixed Connective Tissue Disease, (In other words, they haven’t figured out which connective tissues are involved), and now there’s a good possibility that I am having seizures. This is how I live my life. This doesn’t mean that my way is the only way. It simply means it’s my way, the path I’ve chosen and that has and still is working for me.
1. Nobody’s opinion of Me is as important as My Own – If someone is calling you lazy or saying that you are making it all up or whatever ugly thing they have thought to say, learn to say something like, “I’m sorry you feel that way”, and either leave or do something that focuses your attention elsewhere like playing with your phone. If it’s consistently a bad situation around someone, choose You and ditch them. They’re not worth it.
2. Think for Yourself! – The experts, if you’re lucky enough to have one of them, are still just making educated guesses. The field of Neurology is still in its infancy! Having a lesion in this place or that only means something if you believe it too based on the ‘limited’ knowledge that doctors, scientists, and researchers have. There’s no such thing as a crystal ball so please don’t believe in one. Remember history, it was once thought that people with Mental Illnesses were possessed by evil spirits…. just saying. Only 20 years ago, the docs thought that only the extremely young could retrain their brain after injury or surgery. Josh was 7, past the age it ‘could’ happen. Due to a tumor, he had to have nearly 1/2 his brain removed. My friend Kate was told he would NeverEver be able to talk, walk, feed himself, etc and he would need around the clock care his entire life. By the time he was 11, he was in the Honors Program at school They’re predictions did not come true!!! The experts were wrong!!! He reconnected his CNS to the working side of his brain!! What was that? Oh yeah, There’s No Crystal Ball!!
3. Attitude! – Believe in yourself. Believe in the power you have to do whatever it takes to be well. It takes a lot of Physical Therapy (please always pay attention to your form) and it takes Effort!! – The effort to do Your exercises. The effort to find Your triggers. The effort to find the right medications for You, including a DMT if you have RRMS or can get one where you live for the other known types. Not being typed worked to my advantage. It allowed me to take a DMT. Went through many wrongs before I found the right one, took Effort to find! Including ongoing efforts daily has brought me many “Impossible” Improvements! One more time ya’ll! There’s No Crystal Ball!! You can choose the path you want to take. It doesn’t have to be the one that is predicted.
(*Natural remedies do not cure or slow MS, however they might make you feel better. Diets don’t cure or slow MS, however eating right for You, based on how different foods make You feel, might make you feel better and not being overweight definitely will!)
4. Live in Today, for Today, for this Second – The past is the past. There’s nothing you can do about it so forget it and tomorrow is the future. No One knows the future so don’t waste time worrying about what hasn’t happened! Focus on what’s happening right this second and shred the anxiety and free yourself from unnecessary fear. Not Easy I know. It takes Effort to do. I shall repeat: There’s No Crystal Ball!!
5. I have No New Normal and never will! – You don’t have to get used to it. Ya know, it’s not just me who has made Improvements; there are lots of us. Shall I repeat? There’s No Crystal Ball! hahaha- Do things to help create an environment for Improving! Take advantage of Physical Therapy (PT) and keep your goals simple and reachable. Do the exercises on and off all day, every day, so that you can do more while becoming less tired. Cognitive Training requires the same amount of attention as physical training and can Improve your skillzz! I play a wide variety of kids games as a part of my own Cognitive Workout. Hey, don’t judge me, they’re more fun than the ones for adults. heeheehee
6. Keep Occupied! – “Idle hands are the devil’s playthings!” I don’t remember who said it, but I love this quote. It’s so true. Find new hobbies or pick up old ones. I’ve done both. One is social, Strangers are My New Best Friends! (Ditched my old ones who seemed to think I should be the butt of all their rather cruel jokes. see #1) Another is building things out of small rocks (sounds kinda nerdy maybe, but it’s great for coordination both muscular and visual) or just plain getting creative. Artistic activities also assist training a person’s cognitive skills. That’s a win win in my book!
7. Smile Big, Smile Often, and Laugh a Lot! – I couldn’t say this often enough. Try finding the fun and funny in each day. It’s always there. Some days you just have to look harder to find it. If you’re having trouble with this try listening to upbeat music, watching funny videos on YouTube or getting together with friends online. I like Twitter for this since it’s more instantaneous. Laughter truly is the best medicine and the only side effects are a stronger belly and stronger smile muscles! Yes! Another Win Win!!
8. It’s okay to take a Day Off – 1 day here or there is perfectly acceptable. We all do it and need it. Too many, especially in a row, Create Depression and Fatigue or downright exhaustion. Naps don’t really help. We tend to go to bed tired and wake up just as tired. Naps usually only set us up for insomnia. Try taking frequent, short, rest breaks instead. You have to Use Energy to Make Energy. If you keep making while never actually depleting it all by taking rest breaks, your overall energy levels can Greatly Improve over Time.
9. Keep things Simple – Create reachable goals and create ToDo lists that are doable. Set yourself up to succeed! Trying to do too much can be very overwhelming which only causes fatigue along with psychological issues such as anxiety and depression. If you’re still working, let your boss know when it’s too much. Your workplace might just be a friendlier place than you think. No shame in having MS or having these needs as a result. Not even the workplace is worth it! (That just my opinion, although I was never given a choice. My last day at work was the day before my first acute relapse began. This is when I was diagnosed.)
10. In the Grand Scheme of things – Housework doesn’t matter! Seriously, it doesn’t. If you find a tombstone saying the person lying there kept a really clean house, please take a picture and send it to me. I’ve never seen one and been to a lot of graveyards! Lol
11. Love Yourself – This is probably my most Important Rule! It makes #1 and all the rest possible. Always, always, love yourself; your whole self; even those MSed up parts!!
12. Stress makes MS Crazzzzzzyy! – See all my previous Rules! These rules allow me to live the most Stress Free life possible. All negative emotions do is create a feeding frenzy for our MS Symptoms. They’ll go completely bat slap crazy! When this happens you might even think you are in a relapse or progressively getting worse while your MRIs remain stable. I know all too well how difficult it is to get rid of negativity, however #1 is the first step.
Thank you so much for reading. I hope sharing the rules I live by helps you in some way. My greatest wish for you is to Be The Best You Possible!!
If you want, you can find me @MSenIt4Life on Twitter. I would love to hear from you! Also, you can listen to my stories, tips, and off the cuff (as my Mom calls it) ramblings on Straight Up With MS and All It’s Crazy Little Circles on MS & Me Radio online (msandme.airtime.pro) and on MS and Me Media‘s YouTube Channel. https://www.youtube.com/channel/UC931v9UL8etfVEPLBZbkZng