creative center.

Oh Yeah? Take THAT!!!!

Sandy Boyle 03/09/2018

The dreaded jar:-/ Ughhh! OPEN!!!! Friggin OPEN!!! Stupid hands! Enter stage right-rubber gripper pads. Put those rubber grip pads on top of a jar and Walla! I will have my sweet pickles! Denial of function is NOT going down without a fight! You got the wrong one MS- Take THAT!

OK, here goes. I can’t flip an egg with a spatula anymore. So, I spray Pam on the bottom as well as the top and flip them whole in the pan (over the sink of course). I can’t peel, slice, or hash brown shred potatoes anymore. So what! I don’t peel them and cut them into little cubes. They look different, but it tastes great and I can do it! Potatoes I shall have (my favorite food)! Maintaining a hold of my heavy straight up-and-down drinking glasses escapes me these days. I replaced my frustrating glasses with a $10 estate sale find- 8 lightweight crystal stem wine glasses. Those don’t slip out of my hands because they increasingly bow outward as well as having a stem to grab on to for added control. Walla, Take THAT!

This one was very tough for me. I’m at lunch with a coworker talking of the barrage of symptoms I’d been increasingly affected with when I couldn’t maintain hold of the restaurant’s utensils. They were too heavy and bulky and by now, I’m covered in food. I was completely defeated, scared, embarrassed, and crying like a baby. I never went back to work again, it was my last day. The weight of the cornucopia of symptoms I was dealing with really put the screws on me. I needed help dealing with all this. So, I saw a Psychiatrist to help me deal with the barrage of physical losses I was dealing with and in such a rapid procession. She was of tremendous help to me. It helped me think and process things differently. I’m now applying the same techniques I used in my AF career towards my MS symptoms.

I used to solve intense mechanical problems for the AF, now I do that for my MS symptoms in my own problem-solving way. If forks can take me out of commission, I needed to bring myself back in. I found a set of plastic lightweight round handled silverware at an estate sale- $5 bucks! Problem solved! The same is true for holding a round looped cup for my green tea…those roll down in my looped fingers. I quickly ditched those for square looped cups. None of my cups match, but they all work and they all hold my tea- so Take THAT! Just because you have to do something different doesn’t mean you have to stop it. Reinvent the wheel!

Here’s more cases-in-point. My balance can be thrown off when I bend down to pick things up? So, I bought several extended grabber devices (I have one in most rooms)…a buck a piece;-) Yes, estate sales and they’re awesome. Using my toothbrush was next to impossible. I couldn’t maintain the finite grip or twist of it? Thanks to my occupational therapist, I now have these foam one inch grips to cut to size. I stick my toothbrush in it and I’m back to center. She hooked me up with all kinds of assistive devices to pour, button, arrange my pills…etc. She’s awesome and very knowledgeable. When things are everyday needs and those functions fail, I scream and cry, but only for a few minutes. I’m not interested in wallowing in my own pity party for long. Revenge on behalf of my body is what’s required here. I was never the passive type and I’m not going to start that with MS.

I had to go back to work for myself, to regain my functions. If you’re not used to saying no to something, say it now. I fight to maintain everything, albeit in a different way. Who cares how you do it so long as you’re doing it or at least trying. Listen, I’m not delusional. I have experienced things that are changed forever. I get aggravated and loud, and then I press the heck on. I lost my ability to be outside in the heat or humidity, so I was prescribed a cool vest. It’s a way of having a solution to an outside event I can’t miss. I will make that annual Art Show! Solutions are the name of the game and I seek them out. Even asking your Dr., your PA, therapists, or support groups is seeking a solution. Stay empowered and ask!

I have plenty of unmentionable things I deleted from this story in an effort to maintain my dignity. We all do or will deal with plenty of unmentionables. Is all this embarrassing? Sure. But I’m more determined to overcoming than I am to be defeated. I used to have to use a shower chair due to falling all the time. Your doctors and PAs will help you medically to stop the exacerbations and relapses. Your therapists will walk you through the recoveries, but YOU must be gainfully employed in the recovery of your own body. That doesn’t mean you have to physically do everything yourself – it’s ok to ask for help when you need it. It’s important to check yourself regularly to make sure you still need the assistance devices you’re using. Test it. Test your works progress. It you don’t need it, get it out of your sight. If you need it, install it and use it. It’s not a crime to be impaired, we’ve been the unwelcoming recipients of what this disease imposes on us. So, with assistance close-bye, I showered without the shower chair and found the hard work I was doing paid off. I’m still standing up in the shower for the last 8-12months. What a pleasure and I count those. Are you? It’s small to everyone who stands during a shower. It’s HUGE to anyone who HAS to sit down. Where you are today may not be where you are tomorrow…remember that!

Everything’s different now. I have to be in my very small square shower, I have to touch the walls when my eyes are closed. I had to change from squeeze bottles to trigger pump styles. It’s safer for me to towel off in the seated position rather than standing…so that’s what I do. I insist on working on my progress. Is everyday the same, absolutely not! But I’m doing it! Am I stubborn? All signs point to yes. Determined? You betcha! I’m unapologetic about that.

Here are more frustrations I deal with. The MS medicine I’m on makes my hair fall out and get very thin. Add in the insane itching of Facial Myokymia and all bets are off- I’m upset! Throw in the fact that I couldn’t put my hair up anymore due to finite dexterity issues. FINNNNNNE! This is WAR! I asked my neurologist about this and got fantastic advice. I added BIOTIN to my daily supplements for my hair. For me, it worked. My hair is much healthier. To offset the itching issues, I had my long blonde hair cut short. That was so empowering and immediately removed the stress my hair had caused me for years. Removing stress is an essential ingredient for my health. You know, it’s an intrical part of a women…her hair. But guess what, I won this fight!! MS did not :-/ This is how my “type A” self deals with the war being played against my body. I know there’s plenty coming my way in the progression of this disease, but I owe it to myself to retain as much as I can.

When it’s April in Oklahoma, I clean out my tornado shelter. You know, get the spiders out and replenish the water & snacks. Come May, the sirens will blow and I’ll be sitting in the safety of my storm shelter. Plan your functional repairs that way. I give it all I’ve got in the counter attack. Like in cards, you need to know when to fold them. Some thing you just can’t do…maybe never again. You’ll know the difference. I stopped driving when I couldn’t feel my feet. Once removed from my work stresses and with the assistance of my Neurologist, PA, and physical therapist, my situation started turning that right around. The feelings in my feet cam back and I’ve been driving for well over a year now. However, I will stop immediately if I can’t feel my feet again. This is what I’ve learned. If you’re always laying on the couch, you’ll have a PhD in laying on the couch. Get up, if you can, and move a little. Get up two days later and move a little more. Execute the counter attack on what this disease is trying to take from you. Enact a plan towards recovery with your medical staff’s involvement/approval.

Some other progress exampled for me are, I used to me unable to do the heel-to-toe walk for my PA. I lost that I assume in the lesions and black holes in my brain. My physical therapist let me know, the average person uses a small percentage of their brain for daily functions. So, I read an article called, “Do People Use Only 10% of their Brains?” It was on “Scientific”. It was written by Robynne Boyd Feb 7, 2008. The article had a line that resonated with me. It said something like, after injury or even partial brain removal, the brain has a way of compensating and making sure that’s what’s left, takes over the activity. How cool is that? My physical Therapist said, through repetition; rewire that heel-to-toe function to another part of your brain. She said to stop using my arms on the walls to stop my imbalance- instead pop my leg out for the correction. Guess what, it worked! Each time it takes me 2 or 3 attempts, but then I can do heel-to-toe! Even typing this story is an exercise in fighting to regain what I’ve lost in finite dexterity. Now this is my personal experience: work is required if you want results.

Two years ago, my typing was fraught in typos every other letter and me raging in frustration. My handwriting was completely unreadable. When I had the idea of this story, I got out a paper tablet & a pen, and hand wrote the notes for this story. My intentional hand uses paid off- I could read all my notes! Practice = rewiring. Beeee Stubborn. MS is trying to determine who you are. You have to be more stubborn than it is. This is war! Gear up- eat well, move more, practice with repetition, take your medicine, talk with your medical personnel, use (in your own way), the advice of people who’ve been there and acquired their own success. Take command of your own body and insist on your roll in your body’s recovery.

Let’s be honest, I’m not immune to the full loss of a function. We’re all going to have to deal with that. It is a progressive disease…for now. But I have hope and my faith. However, clean out your storm shelters in April for the May tornado sirens…in Oklahoma, it’s a guarantee. So is MS and the losses you must take charge of either by physical actions, and/or by adjusting your attitude. I’ve adopted something that works for me. I owe it to myself to try and try again. When I couldn’t work the posts of an earring, I switched to the slide-in style. I can’t work the clips of a necklace, so I switched to the magnetic attachments. Can’t perform a screenshot on your iPhone anymore? Here’s your solution: Go to your iPhone’s settings icon, General, Accessibility, Assistive Touch, enable it and WALLA! You’ll have everything as a 1-touch function! BTW, other smart phone’s have that function too. So go take that screenshot or many other options. OBTW, get you a “POPSOCKET” or similar device to affix to your phone to assist in holding it. When I couldn’t press the spritz top of a perfume bottle, I poured it into a squeeze nozzle type bottle I found at the local drug store. I couldn’t work the little round twist-on of a lamp, so I bought a $10 touch lamp- best purchase I made MS wise. Light I shall have!

Here was my biggest hurdle. I had an intense career I loved for 30 years. I ate it up, it was such a pure sense of accomplishment. Enter Vertigo, a neurogenic bladder, double vision, estropia, pins and needles, canes & walkers, toilet seat handles…and the list goes on. It changed everything. I thought what I experienced all those years was the good kind of stress, you know, the kind I was wired for. I had to face the hard facts that MS changed how my body processed stress. I had to cry UNCLE! I’ve been disability retired for not quite a year now. Had I not done that, I wouldn’t have been able to tell you how much better off I am having removed myself from the stress, paid attention to my own body’s recovery, or have been able to draft/handwrite and type this story. Night to Day/Dark to Light/ and Rage to Peace (I’m still working on that one). I’m a work in progress and I will always be. Once you accept that and forgive yourself for your own frustrations, you can move on and engage in life again. Get out there and find or start your MS support group- it’s priceless. We’re all in this together. I’ve been rescued in my bad days by my group (A.T.O.M.S.), and think I’ve helped by others cheer up too. This is certain, we look forward to the next meeting/gathering place, we all have fun, and love each other’s company. Get out there and engage in life again- no isolation allowed (unless that’s your nature). I know we all have different issues, different attitudes, varying diagnosis’s, as well as different levels of responsibilities and stressors. I do not want to preach for anyone to use this story as a recipe. But use it for inspiration to devise your own plan. We’re here AND WE COUNT. So, to end where I started, Oh Yeah? TAKE THAT!

 Sandy Boyle

A.T.O.M.S. Member

RRMS Begrudged Recipient

Type A – So There!





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