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Some Bizarre Life Hacks I

Some Bizarre Life Hacks I’ve Adopted Because of MS

Living with a chronic illness like Multiple Sclerosis involves adapting to a new way of life.  While some people like to say that MS “doesn’t have them”, I freely admit that it’s part of me.  That doesn’t mean it runs my life, it simply means that I’ve adapted the way I do some things.  With that in mind, I thought I’d take a look at some of the (sometimes weird) life hacks that I’ve adopted because of MS.  These are small things I do on a daily basis that make my life with MS go a little smoother.  Things that are routine to me, but still a little off-centered enough that I get asked about them.

The beard

Apparently one of the first things people notice about me is my beard.  I’ve been growing it for a couple of years now and it’s started to get to a nice size.  I’ve noticed that beards have been trendy lately, but that’s not at all why I grew one.  I’m far from a hipster, the reason I grew one is because of MS. Spasms and tremors in my hands are a big reason.  I admit it, I’m a pretty hairy guy, so to keep clean shaven, I’d have to shave every day.  Shaving was starting to become a pretty bloody affair because I’d get sudden spasms in my arms or tremors in my hands every time I tried to shave.  My hairiness always seemed too much for even a very good electric shaver to tame, so here I am with a beard.  Even aside from all the cuts, I feel I can make better use of that time and energy on something else.  Sure, shaving may seem like a minor task to many, but when you have a chronic illness, as the “spoon theory” says, everything adds up.

I grew up playing hockey and remain a fan of it to this day.  You’ve maybe heard of the concept of a “playoff beard”, where players start growing a beard at the beginning of the playoffs and don’t shave until they have won the championship or have been eliminated.  I started growing mine around the time I got pushed onto disability, when things really took a rough turn because of MS. Losing my career to MS was a pretty big deal and I do very much look at this as the playoffs of my life.  Being on disability, fighting my disease on a daily basis, it’s easy to look at it like that.  This is when I need to be at my best and “play” my hardest.  Seeing that beard every day is a nice reminder that I’m “still in it”, I’m not eliminated yet.  It may seem silly, but small motivators like that can be pretty helpful.

The sharpie

If you see me wearing short sleeves, from a distance, you might think I’m sporting a few tattoos.  Upon closer inspection, you’ll see that I’ve actually just written on myself with a sharpie.  Sometimes a lot too.  Some of my symptoms are related to cognitive changes, memory being a big problem area for me.  One way I try to combat those memory issues is by writing notes to myself.  I use an app on my phone for some things, but many times, particularly for short term items, I write on my arms so I will see it and remember it.  I know enough to check my arms when I am forgetting something.  It’s odd, it may not look great, but it’s extremely helpful to me.  And contrary to what many think, sharpie does come off of skin easily.

Dogs

I grew up with dogs, lots of dogs.  They’ve always been an important part of my life and now is no different.  I’ve spoken before about how my pups have been enormously important to me since I’ve been on disability.  The types of dogs I’ve had recently have had to change though.  I have two bigger guys (Murdock and Dexter), but because of their size and need for exercise they have to live with my parents.  My legs just can’t handle the longer walks they require.  It’s ok though, they have a blast at my parents’ place (they have a massive yard and other dog friends there).  In recent times, I have adopted smaller, older dogs.  My first, Penny, who has sadly passed away, and now Ferdinand, move a bit slower and need a little less walking than the big guys. They both had/have assorted issues, just like I do.  There are a lot of older dogs out there that maybe aren’t as spry as they once were, just like many of us with MS aren’t as spry as we once were.  To me, that’s a perfect match.  So please, always consider rescuing an older dog, you won’t be disappointed!

Toys!

Having MS can be pretty lonely, depressing even.  Being on disability can make that loneliness and depression even greater.  So many people think it’s great to not work, when that is far from the case.  It sucks, it’s awful, and it’s boring too.  You have to find something to occupy not only your time, but your mind.  I found that I needed a release, something to quiet my thoughts at night.  My body can’t go play hockey any more, so I needed something less active.  Somehow that became toys, I’m not even sure how.  I now collect toys (primarily action figures) and also sell them on eBay.  It’s my hobby.  I have an office (ok, toy room) in the house where I can go and just get away from everything that’s bothering me, I can focus on something other than whatever is going wrong with my body at that moment.  It may sound weird, juvenile even (though I’ve learned there are a massive amount of adult collectors out there), but when you live a life in pain and you are isolated a lot, it’s nice to have a distraction.  At the suggestion of one of my doctors, this hobby has grown to include the building of LEGOS/Mega Bloks.  He suggested it as a therapy to help with both my cognitive issues and the numbness in my hands.  It’s actually worked wonders (I’ll even work on a set before I start writing because it seems to get my mind ready).  Bottom line, finding some kind of hobby or distraction is important, just remember that you may find one some place you wouldn’t normally look.

The way I dress!

Ok, this may not be so odd, but, because temperatures can be such a trigger for me (especially warm ones), I tend to wear shorts a lot.  Like sometimes even in the winter.  Those shorts are typically cargo shorts, and you know what?  In the summer, there is a good chance I have some sort of cooling pack in the pockets to help me deal with the hot weather.  I also get very particular about the material of shirts I wear.  If I find something that feels ok and is thin and breathable enough, I’ll buy multiples of that shirt.  It may look to some people like I wear the same shirt constantly, when in reality, I have several of it.  Finally, I wear flip flops most of the time.  My neurologist hates that I do that, because I do tend to fall a lot.  Since I fall a lot no matter what kind of shoe I wear, I stick to my flops (again, even in the winter).  My hands get numb, so putting on regular shoes can be tough, unless I get my wife’s help.  So wearing flip flops is something that allows me to take care of myself a bit.  Not having to rely on someone for even that small of a thing is pretty helpful for my mental state!

I feel like I have a lot more of these I could talk about, but for now, I’ll stop here.  I’d love to know though, do you have any ways that you’ve adapted to your life with MS that may seem a little different to others?  So please hit up the comments and let me know, I’m always looking for some tips!  Thanks for reading!

Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Sarayvonne
    2 years ago

    I really like reading stories from people around my age that are dealing with the same issues as I am. My new hack has become long dresses and pants because I fall so much that I have bruises and cuts on my legs pretty often. My friends and family will gasp and I got sick of explaining that “everything is ok at home.” Recently the best one I’ve found is a cooling towel that keeps cool and wet for several days (insane) that a friend gave me at a wedding where there was tons of dancing.

  • Catgirl66
    2 years ago

    My best life hack is my black cat, Mickey. He keeps an eye on me, and when I’m starting to fizzle out he does everything he can to get me to lay down & rest. He also curls up under my chin & “reads” the news with me and he plays a mean game of fetch. Best of all he doesn’t require walking AND he never complains about my preferred footwear: Crocs!

  • 1c7s7cj
    2 years ago

    Sometimes, when showering, I have issues holding the washcloth. My son had some perfectly good tube socks he wouldn’t wear so I took a pair, turned them inside out (that gives you that washcloth like surface), cut thumb holes and now use them as washcloths! The elastic keeps them in place on my arms and the thumb holes allow for more flexibility. I personally like the calf high tubes, they don’t have a heel to deal with, but I’m sure other sock types would also work.

    Socks over your hands, inside out or not, can be used for dusters, dish cloths, etc., etc.

  • traveling1
    2 years ago

    This past year has been one filled with hard truths, increased challenges with my mobility and ultimately bizarre, often comical if not so tragic encounters I find myself in on a daily basis.

    The often missed humor in moments that others may find worrisome is in part keeping my sanity.

    I have been blessed with the privilege of meeting some wonderful people in my life. And the major component of those special life long relationships has been our shared humor which has led to hours of laughter and has lifted me through some of my darkest moments.
    It is this inherent ability to find humor without trying that makes those moments pure magic.

    The other morning as I was pondering this seasons dilemma of daily rain all day, and blasting take your breathe away heat & humidity. I started to jot down a few thoughts as an outline for this.
    Because this year the physical challenges are mounting and by far, I am working harder than ever to maintain my independence.
    Heat & Humidity are my enemy. My limbs feel like I have glue on them, my feet feel like they are stuck to the floor, and at times just bending forward to stand is like I am strapped in the chair and trying to get up.
    So add to that picture some of the daily tasks I encounter such as, the car.

    Now driving to me is as much a part of me as breathing. When I noticed problems 2 years ago now. That my foot was not lifting on command, I quickly went about learning and getting Hand Controls installed in my car. I should mention that I also have an outside lift on the car to transport my mobility scooter.

    This is where things are getting difficult.

    Although the lift is a great thing, so you can transport the scooter. It is not without flaws.
    First I have to lower the platform ( thank God that is power driven) drive the scooter onto the platform and then get off, raise it and here is where it gets tricky, bend down and secure a strap that holds it on the platform. Not so easy when balance and strength are your issues.
    Now once I have done all that I can inch my way along the side of the car to get in. Once inside situated I am good to go. And have to do the entire process again at my destination. WHEW!
    And you think I am not physically active?

    I have been blessed with angels who come to assist me every day. I acknowledge that the Dear Lord has sent them and give thanks every evening. But in addition to the physical help they offer, often times those moments are filled with humor. Yes God has sent me Angels with a sense of humor! I Love that!

    It is these moments that I feel are worth sharing. For they offer a twist of thinking and an opportunity to laugh at myself.

    I hope you see your angels each day.

    THINK BIG
    Now this was a moment where in another part of my life was an opportunity to flirt and hopefully get to know this man.
    I was pulling up to the dentist, parking across from a row of small store fronts. As I was inching my way to the back of the car, a voice was calling behind me asking can I assist you? As I turned I saw a rather nice looking older man, well groomed, nice trim physic. I immediately replied I would love that. As I showed him how to release the strap on the scooter, he observed this was a little difficult, so I piped in saying, what I need is a handicap van, but they are very expensive, he seemed to know as he nodded in agreement but then went on to say, yes and it might come with a personal driver as well!
    And my response to that was, I Love a Man who thinks Big! We both chuckled and off I went smiling and thinking to myself, in another situation we might have dated…

    Only in Florida
    I still find myself grinning when I think about this moment. I had just finished what I now refer to as” hitching up the horse to the wagon”, as I cant help but think this is what it must have be like living in the olden days when the pioneer woman went to town. They had to do all that first before going anywhere. Now that was hard work! Just like what I now find I am doing getting the scooter loaded on the lift. Anyway I had just gotten into the car when a very pregnant woman came up to the car and was inquiring if I was looking for an AIDE! Yes she was soliciting me for a job. She explained she was due in 2 weeks and she is a certified healthcare aide.

    And so this is what I have come to, healthcare workers soliciting me for work. Things have really changed!

    More Help
    As I am out and about during the day I find myself in places with young mothers or women who are well into their senior years. So I notice similarities that we share. For instance. The new strollers that these women have are as big as my scooter. And I imagine close to it in weight. I watch them pull up in their SUV’s pop open the back, pull this thing out. Set it up, go into the car and get the baby, the baby seat, and finally take off in just under 15 mins FLAT! While I am still lagging behind, getting myself going takes me about 18-20 mins. On a good day!!

    I have been approached by countless angels offering assistance, but a large number of them are pushing 90, and I just cannot accept their assistance. What if they got hurt helping me I would never forgive myself? But you have to admire their chutzpah. But somewhere inside me I feel a bit annoyed by this. I can’t help it. And then it came to me the other day why I was feeling this way.

    OKAY, this is getting bad now; the 90 year olds are offering to assist me! I am only 57!

    Feeling Vulnerable

    Now I have been a woman living single for just a little longer than living with MS. they sort of happened at the same time. I was getting divorced and ended up in the hospital where the Dr.s immediately started talking about MS as a diagnosis. I still continued to work for 10 years and have owned 2 homes. My life experiences are just as diverse and valuable as any of my married friends. The playing field for woman living single and managing a home, car, kids has always been difficult. But I now see a new resurgence of some old acquaintances, the “opportunity seekers” lining up to cash in at my expense. I have noticed when talking about a service or a purchase that people are treating me as if I just arrived on this planet today. We all have been in a situation where we see a sales talk. And we talk about elderly and how they are taken advantage of. But I am still the same old gal I have always been and don’t like when people try to take advantage. So it is with this new awareness that I have devised a simple strategy for dealing with the wise guys.
    I AM MARRIED! I refer all conversations now to my “husband” to review, yes if I need a price for anything now that is how I handle it. I simply say I have to give it to the “boss” to review. I have even put some men’s items around my house, strategically placed tie on a doorknob and a pair of men’s shoes at the door! Hey this is combat if a service worker comes to the house for a repair set the stage. No need to broadcast my single hood to anyone.

    Creative Thinking

    Anyone that has had to deal with a loss of mobility quickly learns how to be creative. I am sure that I am not the only one who uses a variety of tools in very different ways than what they were intended. You start to look at things differently. I have been known to use my cane for pushing a door open or pulling a public ladies room stall door shut behind me. I use it to close my car door I just hook the handle on the door handle and pull the door shut. I also use my cane for pulling bath tissue down off the shelf in a supermarket because they stack them to the ceiling! I will knock soft goods off a shelf into my basket (great for pasta), now these are things I never would have thought of doing before. I try not to think how I must look to a passerby; people always offer to assist when they see this. And one older woman told me I was VERY RESOURCEFUL! I am not promoting that we wreck the store, but if you shop alone and don’t have help, well you just have to be creative!

    Getting Your Monies Worth

    If you have ever had a hospital stay you are familiar with just how frustrating that environment is. And in this world of billable items hospitals make sure they get every dime they can from you. A few years back I had a 2 week stay due to multiple fractures, my arm & foot. The day before the discharge physical therapy came to my room to order equipment needed to go home with. I thought well that is very thorough of them, making sure I will be safe at home. A few hours later the delivery arrived, a walker, a 3in1 commode, a wheelchair and a grabber. WOW, this is a lot of stuff. I really did not think about it until my friend arrived to take me home. He had brought my car which was a little better. He had a mustang coup.
    The nurse arrived to wheel me down and we had to ask them for a luggage cart to drag all this stuff. When we got to the car my friend was starting to try and get the things into the car, he fought with dropping down the seats and loaded the trunk, but he could not get the commode in. As he was sweating he said it is not going to fit, and with that the nurse pushed forward and said in a very stern voice “Oh Its Gonna Fit” and she proceeded to direct him how to turn it so it will get in. Finally everything was loaded up including me. And my dear friend wiped the sweat off his brow turned the A/C up full blast and off we went. Almost immediately we both started laughing uncontrollably, I said I felt like she was going to strap that commode to the roof of the car if she had to. I felt like the Beverly Hillbillies driving down the highway. My car was loaded to the top with medical equipment! We laughed all the way home just playing that scene over.

    Becoming a Regular

    Having been in the hospitality business for almost 20 years the phrase “A Regular” is one given to our exclusive repeat customers. The ones that spend money come often and never cause a problem. In short our best customers. So as I have lived in my home now for 10 years I have graced the halls of some of South Florida’s best healthcare facilities. With the economic downturn it has led to the downsizing in this industry as well and displaced top nurses and healthcare workers. One such hospital closed and the wonderful nurses and healthcare workers were left to find new employment. I had a short 5 day hospital stay last week at a local hospital. On my 3rd night I was getting comfy on my state of the art bed that has more controls on it than Apollo 7. I had just elevated my legs, slightly elevated my head for optimum TV viewing. The lights dim and volume low. And thanks to all the medication I was in that very mellow zone. When a healthcare worker came in to check on me, as I looked up it was a familiar face. He recognized me as well. We met 5 years ago when I was his patient at the now closed hospital. We quickly caught up as he tended to my needs and we shared the same banter once again. As he fluffed my pillow and said good night I felt safe and secure that Cas was on the night shift. And I drifted off to sleep knowing someone knows who I am. Not so bad to be a “regular”.

    Cigars, Cigarettes ,Tiperello’s

    Another staple in hospitals these days is the role that Registered Nurses play. There was a time when they were next to the Dr. in medical care. But with the development of all the new medications, more often than not your stay is primarily all about administering medication. And so the change in role. All the registered nurse is responsible for is doling out those meds. She has a fancy cart with a computer on board that she swings through the hallways as she is checking her screen to see what she can offer you. It is not just the medication to treat what ails you, but a wide variety of secondary meds. That you might need as well. Let’s not forget the bottom line. Meds are the #1 money makers in the hospitals. So when she arrived in my room, offering me everything from narcotic pain meds. To blood thinners I could not help but see her as a 20th century Cigarette Girl. You know the ones who used to work in the Fancy Supper Clubs. They had a tray strapped around their neck with Cigars, Cigarettes and Tiperello’s in it. I don’t know why that image popped into my head, maybe it has something to do with the little buzz I have from all the meds. Anyway that is my take on it.

    In the Navy

    In our supermarkets here in South Florida you will often see older retiree’s as bag boys. My local store has a very older man who is one of them. It seems he is determined to expire helping people out to their cars with grocery bags. I try to avoid him as my situation calls for strong able bodied assistance. And he scares me . So as luck would have it the other day I was on the check out line when he appeared. As he loaded my bags he said he would help me to the car. So off we went. After he put the bags into the car, it was my turn to get in. But as I tried to get up off the shopping scooter I could not get up. He then offered to help me up by putting his arm under mine. As I stood up I said to him I don’t want you to hurt yourself helping me. And he responded with telling me he was in the Navy and was used to doing this. Immediately my mind raced to “when was that” as he looked well into his late 80’s maybe 90,s. So we’re talking minimum 40 yrs ago. Time does stand still for some folks.

    Join the Circus

    I started swimming shortly after my diagnoses almost 23 yrs. Ago. I moved to this community in part because we have a lovely aquatic center.I approached them with mixed feelings 6 months ago, to explore making a handicap access into the pool. It has been a struggle but they finally unveiled the lift this week. So on my inaugural first ride I found inner strength to overcome my self image issues by my dear friend humor.
    I was instructed by the lifeguard that seemed very unsure of just how this thing worked, so with much trepidation I climbed aboard the chair, upon which I was handed the remote in a plastic bag (cannot get wet), that did not seem right. I was VERY apprehensive about doing this myself, the lifeguards were instructed not to assist. So as I hit the button, the chair swung out over the water. As I was sitting, feet dangling over the water, all eyes on me, I visualized in that moment. A carnival game were you throw balls and dunk the person sitting in the chair.
    So as I descended into the water my mind switched to that image, my twist, DUNK THE DOLL.
    I told it to the few men that were there and they all laughed, And I got past the fact it is a handicap chair. And so it goes.

    Felicia J

  • H Parks
    2 years ago

    Devin, loved the article! Please, more life hacks! I used to deer hunt a lot, and still do with quite a bit of difficulty. I’ve come across some life hacks from others with disabilities that help me keep this activity going! Keep up the good work!

  • Joys-An
    2 years ago

    I really enjoyed reading your article and could relate to a lot of it. I am a 73 year old grandma who spends about 95% of my time alone. It is really by choice even though I have a loving family. I’m slowly trying to change that, but that is a whole different story. I especially liked your hack about writing on your arm with a Sharpie. Could you please tell me how you take it back off? Does writing in different colors change the way it’s removed. I really don’t know. Since I do live alone and seldom have company, I don’t bathe or change clothes as often as I would if there was someone here often. I do put on a clean top and under clothes every day, and bathe with pre-moistened wash cloths at least every other day, but I wear my capris several days between laundering. I was and beginning to have a lot of problems being on my feet. It felt like I was imploding into my waist. But, I found a work belt that my son left here and if I put it on rather tightly around my waist it helps…a lot! Dogs….I want one so bad!! But I’m not sure I could be a good parent to one. I like big dogs, but my son owns the house I live in and he says I cant’ have one inside. Since extremes in temps cause me to have to be inside most of the time, I’m not sure it would be fair to get one. I could sit here and write all night (I will be awake!), but I’ll give you all a break. Keep up the good work, Devin!! Thanks!

  • heather.rose
    2 years ago

    I recently adopted a wonderful dog, Cooper, from the SPCA. My family and I all pitch in with his care and I am pursuing getting him trained as a service dog. It has helped me so much with the loneliness and depression that started creeping in. Cooper was an answer to prayer.

  • whatshername004
    2 years ago

    Thank you, Devin, for such an enlightening article. I live in Oklahoma so the heat is a problem. I try to make appointments and run errands early in the morning. Do not go out after 11 a.m. or before sundown. You are so right about the loneliness and depression of being on disability. I belong to a yahoo MS group and it’s very friendly and fairly active about more subjects than just MS.

  • Stanner
    2 years ago

    Devin – Love the hacks (wonder how I’d look with a beard.). I’m a terrible gadget junkie myself. Magnaready shirts, PenAgain wishbone shaped pens, a bed caddie rope to help me out of bed, button hook to button shirts, a “Uri-bag” at the side of my bed,Crocs (Velcro is my friend),; for exercise, an Alinker standing bike. I’m so fatigued, I need a nap after showering, so I’ve started showering before bed. Mornings are just brush teeth, wash face and I’m good to go!

  • Blessed1
    2 years ago

    Wow…reading your articles and the comments is so refreshing!
    THE HAIR: Just cut all mine off, pretty stylish, but VERY short. Got so tired of the ponytail and stringy hair appearance, I had to do ANYTHING…or buy a fancy wig. Problem was, after taking a shower, I was so wiped out, blow-drying and styling was like a full gym workout for my arms. Forget the legs…every time I stretch and my face gets close enough to see them – “Oh, need to shave them?”, then next time…”Oops, forgot to shave them!”
    WRITING ON MYSELF: I always say, “If someone cut’s my left hand off, I’m in big trouble!”
    Being right handed, I have a bad habit of writing all my memo’s on my left hand.
    MY DOG: Gotta have a dog! He works with me as a Therapy Dog, Always by my side, and now poor little guy, he limps too:-/
    I could go on and on…..

  • Mickle13
    2 years ago

    You Rock, Devin! Your Sharpie idea sounds better than the kazillionn stickie notes and lists I have everywhere!
    Mitch

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Mitch!

  • Julie
    2 years ago

    I may get slammed for saying this but I just cringe when I see someone saying “I have MS but MS doesn’t have me”. I mean no disrespect but I know no one with MS that hasn’t had to make some kind of adjustment in their life no matter how small.

    I have had to give up razors for my legs and purchased an electric razor (that I don’t like much at all), I had to buy an electric buffer to use on my nails because I haven’t got the strength in my hands to use a regular clipper. These are only 2 small things I’ve relented to.

    I’ve also given into disability and also cringe when others tell me how lucky I am. Or when they say, “wow it must be nice to be able to sleep in”. Yes, sleeping in til 9 am is wonderful when my leg spasms have kept me awake until 4 am.

    I recently lost my beautiful Alice (German Shepherd) to old age. She was my constant companion for 15 years, being with me from the time of my diagnosis, she sat by me while I cried or raged. I have 2 grandkids so she was always getting a workout. But it has me wondering if I should get another dog. I sure miss having one around but I never thought it would be fair to bring one into my household. But your suggestion of rescuing an older dog makes the most sense! I am now considering this over a pup.

    Thank you for your article, they always give me good suggestions and ideas or just remind me that there are plenty of people out there going thru the same dilemma as me.

  • whatshername004
    2 years ago

    My ex husband just got a puppy and it has convinced me I will never get another puppy ever. I’d much rather have a rescue dog that has already stopped biting, clawing, using the bathroom everywhere and just being completely hyper and untrained. I am sorry you lost Alice. I believe you should get an adult dog they are beautiful companions.

  • Devin Garlit moderator author
    2 years ago

    Thank you Julie, people really love that saying but I cringe every time I hear it (https://multiplesclerosis.net/living-with-ms/ms-ms-sort/). I’m so sorry to hear about Alice. I understand, and I still grieve for Penny every day. At first, I couldnt even think of getting another dog, but I knew she’d want me too and she’d want to help out another older guy in need. I know some friends and family think I am set myself up for heartache, but after having gotten him, I can’t imagine it any other way. Ferdinand is just so happy to have a home, and that happiness is infectious! Thanks so much for reading and chiming in with your experience!

  • joannmaxwell
    2 years ago

    This is so timely. I just wrote an article on my WordPress blog about my new “do”. I have had to make some drastic changes in the last several weeks. If I could take my head off and do my hair and put it back on, it might work. My right hand is so weak that it is extremely hard for me to reach back and do any kind of styling. Agghh!

  • Devin Garlit moderator author
    2 years ago

    Thanks jmaxwell! Right hand weakness is always a problem for me. It’s funny you bring up your hair, just last week I shaved the hair on my head now. Just so much easier to maintain now, add bonus is that it’s cooler for the summer!

  • clsuhre
    2 years ago

    My disability is in my legs, not hands and arms, so – Shoes! I spent a lazy, barefoot summer last year. I did a TON of genealogy at the computer, and never wore shoes unless they were required at the destination. Bank machine? Fast food? No shoes. And then… All that barefoot stuff, plus all the sitting, gave me plantar fasciitis and an inflamed S-I joint. I am a little smarter now, I wear sensible shoes with arch support, that don’t trip me or fall off due to backlessness, and I get up off my butt and do something every hour for 10 minutes. There is still residual discomfort, and I worry I have damaged my body permanently.

  • Devin Garlit moderator author
    2 years ago

    Thank you clsuhre, Sorry to hear about that, hopefully the damage isn’t permanent! I very much sympathize though, If I am at home, I’m usually barefoot! Thanks for bringing it up, that’s a good warning to all!

  • beth0406
    2 years ago

    Hi Devin,
    I try daily to keep up with my boys 12 and 11. I’m lucky enough though that they LOVE logos and Mega Blocks.
    I forget to write things down. I start to but forget what I was going to write down. I’m falling a lot and I hate shoes period because of the work it takes to put them on.
    I try to find that one good thing in every day. I know it’s not a typical life hack but it helps get through the hard days.

  • Devin Garlit moderator author
    2 years ago

    Thank you Beth! Sounds like we have a lot in common! Trying to find at least one good thing about every day is massively helpful! Just trying to think of it can be helpful, because more often than not, there is a lot more than one!

  • potter
    2 years ago

    Like you I wear shorts, sandals and lightweight shirts as long as I can. In the winter I keep the house at 66 F during the day. I never take a hot bath or but a heated rice bag on my neck, my neuro says that is a no no. Keep frozen water bottles around, when I put them on the back of my neck they cool the blood going to my brain. I have learned to relax and rest when I am having a bad day and not push through it. I work in my pottery studio half days now instead of full days. Potter

  • 54Turtle
    2 years ago

    Devin, than you for the tips. Although as a female I have noticed that my shaving days have dramatically decreased with this disease. One of my meds effects hair growth so I can go a couple of months at a time without the dreaded shaving. My sweet fur baby is 16 so she does not require a lot of physical maintenance fortunately. It is usually a race to see which one of us poops out first. I think I might have to adapt your sharpie tip!! Really good idea! I need a tip on how to keep up with 9 grandchildren ranging in age from 3 to 18 any ideas?????

  • Devin Garlit moderator author
    2 years ago

    Thank you 54Turtle! I give tremendous credit to you ladies, I’m here complaining about my difficulties in grooming and I know it’s probably 10x worse for all of you! Wow! 9 grandkids! That’s an area I don’t have much experience with yet 🙂

  • joannmaxwell
    2 years ago

    I haven’t shaved my legs in a long while, either!!

  • Jenmichele01
    2 years ago

    Devin,
    Thank you for your articles. They are great.
    The Faith article was the first I read and it perfectly explained how I feel. I’ve since read many more, and they have all helped me with a recent bout of frustration/depression. I was diagnosed with RR on 7/21/16 after an attack very similar to yours. Started Tysabri 10/3 and so far it’s working well. Even though I’m lucky to be working full-time, in a long-term relationship, and able to interact with lots of people daily, it takes such a toll on you mentally when people say
    “you look so good”,
    “you must be feeling so great”, (sure, except for constant pain, leg cramps, not being able to walk very far, noise sensitivity, brain fog, crippling fatigue, side effects from treatment, and feeling overwhelmed trying to keep up with everything I used to be able to do) or, my favorite:
    “you just need to focus on the positive”…
    When you’re only 8 months in, and still adjusting, that’s much easier said than done.

  • heather.rose
    2 years ago

    I dont get upset anymore when people say I look so good. It used to frustrate me but not anymore. Im glad that they think so. At least I have that going for me! lol

  • Devin Garlit moderator author
    2 years ago

    Thanks Jenmichele01! I appreciate that! The “looks so good” comments are tough, I think that’s some that most of us get tired of at some point. People mean well, but they don’t realize how that makes us feel. “focus on the positive” or “be more positive” are pet peeves of mine too. I’m an optimistic guy, but I’m also a realist. There seem to be so many people that think just being positive will cure me or take away my pain, when that’s just not the case. Again, well meaning people I’m sure, but still gets to me!

  • Ashley Ringstaff moderator
    2 years ago

    Jen, Glad to hear that you have been doing well, despite your MS.
    The comments we hear can be very difficult to hear from those who don’t ‘understand’ what we are going through, living with an invisible illness, like Multiple Sclerosis.

    I thought you might enjoy these two articles, about things people say to those with MS…

    https://multiplesclerosis.net/living-with-ms/ms-things-people-should-not-say/

    https://multiplesclerosis.net/living-with-ms/what-id-like-to-hear-you-say/

    Thanks for reaching out and being apart of the MultipleSclerosis.net Community.
    xoxo-Ashley Ringstaff – Moderator

  • Dimitri
    2 years ago

    I’ve always hated shaving. I’ll be completely zapped of energy when I’m done. Plus I suffer from ingrown hairs on my neck which makes shaving even worse. But I must say you do have an awesome beard. Haha

    I tried the TDCS (transcranial direct current stimulation) body hack. I made a DYI system from Radio Shack with a 9 volt battery. I would use the thing for about 30 minutes a day. It didn’t hurt, but I was experiencing some headaches which I interpreted as “it’s doing something”. When I did my last MRI I was hoping that my brain had been stimulated my the current and had grown some, but nope; no change.

  • Barberintex@me.com
    2 years ago

    My husband had six weeks of daily transcranial magnetic stimulation treatments for severe depression. No affect at all on other MS symptoms except significant improvement in depression and temporary relief of anxiety. Don’t think either depression or anxiety were MS related.

  • DonnaFA moderator
    2 years ago

    Hi Dimitri! That’s pretty brave! Do you have a background in electronics? Have you made other devices, maybe even robotics? -All Best, Donna (NultipleSclerosis.net team)

  • lhalvor
    2 years ago

    Thanks for this article. Loved the hockey references as I’ve been a fan since kidhoid and got back into watching it the last few years. Opposite issue to heat as in I’m always cold but living in Wisconsin may be the issue.

    I took up meditation and jewelry making to deal with my job loss, disability and lack of activity. Recently passed my 40th year since diagnosis. It’s been a long trip. When I was diagnosed in 1976, there was nothing but steroids and they were hugely overprescribed to me.

    Anyway, it’s nice to read others hobbies. Afraid my body would be covered in ink from memory issues as I’d probably forget to wash it off.

    Thanks

  • DonnaFA moderator
    2 years ago

    I’m a fellow hockey lover, lhalvor (Go Flyers!!) What kind of jewelry do you make? I’m fascinated by the wire-wrapping trend, I fear it’s too complicated for me, but I’d love to try. You should share some of your favorite creations on the Facebook page! We’re glad you enjoyed the article! – All Best, Dona (MultipleSclerosis.net team)

  • jtmarcy
    2 years ago

    It’s good to read about how other people manage daily life. I haven’t been clean-shaven in years. I can’t grow a full beard, so I bought an electric stubble razor. It takes so much less time to shave than it used to, mostly because I don’t worry about missing a spot. It takes about a minute to shave. And I live in t-shirts and shorts, only putting pants on to go outside.

    And it’s funny you mentioned LEGO. I used to play with them when I was a kid. Still have them packed away. I graduated to woodworking when I got a little older, but now, monility issues and a weak left hand make that a bit dangerous. A few years ago a LEGO expo came to the city and I bought my first set in about 30 years. It’s still really fun, and I can do most things one-handed. I got a few more sets since then.

    Nice article!

  • DonnaFA moderator
    2 years ago

    Hi jtmarcy,

    Sounds like a sensible approach to self-care! We’d love to see some of your LEGO creations! You should snap a couple of pics and share them on the Facebook page. LEGOs are am awesome hobby 🙂

    We’re glad you enjoyed the article and that you’re part of the community. -Warmly, Donna (MultipleSclerosis.net team)

  • Dave40
    2 years ago

    Another great read Devin!
    For me, I have adapted the way in which I can play with my two children, aged 5 & 7.
    I cannot run in the backyard or take them hiking in the nearby mountains as I wish I could. With them, we have created games we can play together such as, passing a balloon around the room & the first to let it hit the ground losses. I play cars with my son on the couch or a pullout bed. Lately we have begun to play board games as well.
    On good days I am still able to dance, then pay for it later

  • kelly1827
    2 years ago

    Dave, one of my most cutting losses from MS (emotionally) is not being able to hike anymore with my daughters. We used to hike very frequently, blogged about our littleadventures, and I was just about to start them on backpacking when MS stepped in. I can adapt in most areas of my life, but until I have an “offroad” scooter hiking is off the table.

  • Devin Garlit moderator author
    2 years ago

    Thanks Dave, always appreciate it! People love to say “I have MS but MS Doesn’t have me”, well, MS does have me, it’s a big impact on me, but that doesnt mean I haven’t adapted. That’s what it’s all about to me!

  • Ashley Ringstaff moderator
    2 years ago

    Dave,
    Thank you for sharing your input. We are glad you enjoyed the article! Your tips on being interactive with family, especially younger children, is very helpful.

    Wishing you the best, Ashley Ringstaff – Moderator

  • connie
    2 years ago

    This is me. I can relate to all of your symptoms.
    I’m looking to get a cooling vest but they are expensive. Anyone have an idea of a way to get help purchasing one? The heat totally drains my energy.

  • Marie T
    2 years ago

    I purchased a cooling poncho on Amazon for $23.00. It is bright orange but works very well. It fits under my clothes.

  • Ashley Ringstaff moderator
    2 years ago

    Connie,
    Here is a ‘Cooling Distribution Program’ you can apply for, with our friends at MSAA. Hope this info helps.
    http://mymsaa.org/msaa-help/cooling-products/

    Ashley Ringstaff – Moderator

  • Devin Garlit moderator author
    2 years ago

    Thanks everyone! And because I didn’t see this listed yet, here is a link to the cooling vest program at the MSAA. That’s where I got my first. Sorry for the delayed response, the heat wave we’ve had recently took a lot out of me!

    http://mymsaa.org/msaa-help/cooling-products/

  • skcullers
    2 years ago

    Go to ms.org and they very often can help you. Subcribe too to their magazine. It is free. Good luck!

  • Erin Rush moderator
    2 years ago

    Hi Connie! Sip1beer had a great suggestion. You can check out lots of helpful information at http://www.nationalmssociety.org/What-is-MS. Also, here is some specific about their financial assistance program for cooling vests and other cooling aids — https://msfocus.org/Get-Help/MSF-Programs-Grants/Cooling-Program. I hope this helps! Best, Erin, MultipleSclerosis.net Team Member.

  • sip1beer
    2 years ago

    Try contacting MSAA. They have lots of adaptive things to donate.

  • charlie-tca
    2 years ago

    I wear athletic shoes only, and change the laces to elastic laces. They run between $5 and $7 a pair, but since they stretch I never fight with tieing my shoes. I buy my shoes two pair at a time, so I always have one clean pair to wear when I need to look nice.

  • Devin Garlit moderator author
    2 years ago

    Thanks charlie-tca! I never thought about elastic laces, that’s a great tip!

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