Tag: multiple sclerosis

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Life with multiple sclerosis

This Year I Resolve To Let Myself Hope

The following first appeared on Multiplesclerosisnewstoday.com

This New Year, I Resolve to Let Myself Hope

The new year is just a few days away, so if you haven’t already, you might want to start thinking about resolutions, if you’re so inclined. Although I personally don’t bother these days, about half of American adults do, although that number is declining. One study suggests that about 55% of these resolutions are health-related, such as losing weight. It also points out that the majority of people don’t keep their resolutions.

Even before multiple sclerosis (MS), I wasn’t big on making New Year’s resolutions. If put on the spot, I’d be determined to do something, or do it better, but rarely did I formally “resolve” to accomplish a goal. I suppose the main reason then was that it wasn’t an emphasized tradition in my family. The main reason now is because goals require a plan, and MS makes planning nearly impossible.

From the military, and particularly the U.S. Army Special Forces, I learned to plan in detail. Hope was never a legitimate course of action, and every possibility had to be accounted for by layers of preparation. Our standard was to have a primary, alternate, contingency, and emergency plan (P.A.C.E.) to cover any scenario.

With MS, every hour, day, and week is an unforeseeable and constant “what if.” I like calling it a predictably unpredictable disease, so it isn’t a stretch to say that it’s often expectedly unexpected, too. Trying to anticipate random bouts of fatigue and dealing with constantly varying abilities, both physical and mental, make a mockery of the most detailed plan. There’s a joke that a plan is simply a list of things that aren’t going to happen. MS can make that joke an irritating reality.

Even in my past, no plan was absolutely perfect, and you couldn’t have standard reactions to every imagined event. Changing plans on the fly happened, and I was proud that I could react, but reacting instead of acting quickly becomes tiresome. In the present, my primary progressive multiple sclerosis makes every plan seem like less of a plan and more of a series of reactions.

Spontaneity can be fun, but being forced by MS to constantly react is not the same as being spontaneous. Instead, I have become flexible — unwillingly flexible — and while that’s accommodating, it’s not very fun.

I mentioned that with a rigid plan, hope is not a course of action, but maybe with MS it is. It might actually be one of the best courses of action available to us. Maybe some healthy, realistic hope and faith are the reaction that can become an action.

I think I will make a resolution this year. While I still intend to work hard at dealing with all that MS can throw at me, I resolve to let myself hope.

And I’d like to lose a few pounds.

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Life with multiple sclerosis

Uncomfortable Liminal Spaces: When We’re Caught Between Here and There

I have been very lazy this month. To partially make up for it, this is one of my September columns for Multiple Sclerosis News. I’ll do better next month.

Ben

The following first appeared on Multiple Sclerosis News Today on 22 September 2022.

https://multiplesclerosisnewstoday.com/uncomfortable-liminal-spaces-caught-here-there/

Every time I find myself in a multistory building, I end up on an elevator. It’s not as though I’m too lazy to take the stairs — well, OK, I am lazy — but in this case, it’s because my wheelchair won’t climb one, much less a flight of them. I have no doubt it would go down the stairs, but probably only once, especially if I happened to be in it at the time.

Regardless, I was recently on an elevator all by myself, which is rare. Since I was alone, rather than worrying about running over someone’s toes or being the last one in and having to awkwardly face backward, toward everyone else, I had the opportunity to feel — uneasy.

Do you ever get that uncomfortable feeling that something isn’t quite right when you’re on an elevator, on a long bridge, in a hallway, in a stairwell, on an airplane, or the like? It’s normal because these are all examples of liminal spaces.

“Liminal” comes from the Latin word “limen,” which means “threshold.” These spaces are a pathway between two or more points, and other than that, they have no purpose. In my elevator example, the elevator is a means of getting from one floor to another and is not meant to have the same weight as the origin or destination. Since it doesn’t have the purpose or permanency of either, being on one too long, or without other people to distract you, feels off.

Lumped in with these pathways to a destination are empty spaces that would otherwise be busy. For example, a school, church, or shopping mall is normally full of people and various noises. This is their normal state, and when these stimuli are absent, it can feel abnormal and perhaps even a little creepy. If you haven’t already made the connection, there’s a reason these and other liminal spaces are a favorite feature in horror movies.

Liminal spaces are not limited to physical locations, either. Puberty, retirement, or going through a divorce are a few examples of a mental liminal space. You’re in the process of moving from one state to another, and as with physical spaces, the journey between the two can feel very uncomfortable, especially if it lasts too long.

Multiple sclerosis (MS), in my humble, completely nonprofessional opinion, is a prime example of both a physical and mental liminal space. It can be either an unnerving, frustrating, in-between place, or a space full of confusing silence where there was once bustling activity.

My primary progressive MS is anything but invisible, but many with MS have an invisible, almost invisible, or occasionally invisible illness along with the accompanying disabilities. Everyone’s journey is different, but visible or not, we all seem to be on an eerie path between completely able and completely disabled.

That journey is a mental liminal space as well. We share a predictably unpredictable disease and have no way of knowing where we are between origin and destination. For me, this is especially unnerving and frightening. How do you adapt to, or compensate for, something that may change (unpredictably)? How do you plan for the unplannable?

MS has taken my ability to walk. My leg and core muscles, along with the nerves that activate them, are there and can function, but not enough to hold me upright for very long or to take a step. I’m not paralyzed, but I seem to be on a frustrating elevator ride somewhere between the floor where I last walked and the floor where my legs are completely useless.

If you use a mobility aid of any sort, that’s liminal too. I use a wheelchair, and when I’m with my family at a restaurant, I pull it up to the table and stay in it throughout the meal. This is the most practical thing to do, but it often bothers me that I’m not transferring to a chair. I think it’s because my mobility aid is liminal — a pathway between places — and sitting in a chair at a restaurant table is the natural destination that I’m not quite reaching.

Finally, MS has a way of quieting what was once a life full of activity and noise. I’m still as involved in life as I can be, but there are many things I can’t do anymore, and the stillness is foreign to me. I sometimes feel like the occasional bout of MS noise sensitivity may be partly because I’m not the one making it, and it feels like I should be — sensory underload instead of overload.

How about you? What are your liminal spaces? Please share in the comments below and let me know how to avoid being limited by the liminal.

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Life with multiple sclerosis

Comparing Cases of Multiple Sclerosis Leads to a Logical Fallacy

The following first appeared on Multiple Sclerosis News Today:

https://multiplesclerosisnewstoday.com/columns/2022/06/23/comparing-cases-multiple-sclerosis-leads-logical-fallacy/

If you weren’t aware (I wasn’t), last Friday, June 17, was National Eat Your Vegetables Day. The day wasn’t created to tout any special diet per se, but to increase awareness of the benefits of vegetables in a healthy diet. If you were already aware of those benefits, then at the very least, it raises your awareness that there really is a day for everything.

Growing up, my parents made certain I was aware that eating my vegetables was not only a good idea, but also benefited my health. When I protested, they would offer words of encouragement like “They’re good for you,” “You’ll grow up big and strong,” or “You’ll live longer” — which, now that I think about it, may have actually been a thinly veiled threat.

My parents rarely used it, but one of the more common phrases that parents use to get kids to eat their vegetables, consume a disliked food, or finish all their dinner is the one that invokes “starving kids” in some far-off place. You know the one: “You have to finish your dinner because of starving kids in _____.” The name of the faraway land varied, but the message was the same. Someone, somewhere has it worse than you, so your complaints are not valid.

Multiple sclerosis (MS) and each individual’s experience with it are so variable that it would seem ridiculous to compare symptoms, but people, myself included, do it.

We expect that kind of comparison from people without MS. They all seem to know someone with multiple sclerosis who is better off or more able, or they tell us not to complain because they know someone worse off. Those of us with MS, or another disability, tend to do it, too.

There are several types identified, but even within the same type, my MS isn’t your MS and vice versa. I know that, and I still have to remind myself, almost daily, not to compare my situation with someone else’s and base what I say or how I feel on whether I think I have it better or worse.

My multiple sclerosis is the primary progressive type and has been aggressive, but I didn’t wake up in a wheelchair one day. There were steps — or a lack thereof (ouch! I just hurt my own feelings) — along the way, and with each step I based my actions on comparisons. For example, I can’t complain about my limp because others walk with a cane. I shouldn’t complain about my cane because others have to use a rollator. I should keep quiet about my rollator and be glad I don’t need a wheelchair. And so on.

Conversely, I sometimes think that my meager accomplishments pale in comparison or aren’t worth mentioning to people who I perceive are “better off.”

I touched on this briefly in my last column, so I did a little research and found out that this is a logical fallacy — specifically, the fallacy of relative privation. It essentially says that you can’t dismiss a problem because you perceive that another problem is more or less important.

Do you do this? I know I do — both ways, in fact. I feel like I shouldn’t feel bad about things when I think someone has it worse, or feel good about things if I think someone has it better. I think this could be a part of why those of us with chronic diseases often just say, “I’m fine.”

Yes, yours truly routinely falls into this logic trap. As if multiple sclerosis didn’t have enough problems of its own, I can always find another one. I daresay I’m not the only one who does this, and I doubt it’s the only trap I’ll run — well, wheel myself — into.

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Background Life with multiple sclerosis

Knowing Your Limitations

Photo by Arcade Snacks https://www.arcadesnacks.com/product/gummy-bears-12-flavor-2/

Believe it or not, I was young and foolish once. Now, I’m just ol…..ol….. not quite as young, and foolish. One out of two isn’t bad, right?

Thanks mainly to the grace of God, my various acts of foolishness were not fatal, or even very painful. My shenanigans were mostly of the playful, harmless, valuable life lesson teaching, variety. One of which I will now attempt to twist into a lesson about multiple sclerosis.

If the photo above didn’t clue you in, this lesson involves gummy bears. Not the sugar free ones. If that were the case, even though I’m sure there’s many a valuable lesson there, I wouldn’t be (as) inclined to share. Not sure what I mean? Here’s a link, because I shan’t elaborate.

Back in my days of being an FO in 1st Ranger Battalion, my small detachment would often travel from our little airfield in Savannah, Georgia, to locations where we could practice our skillset. On a number of these trips, we slept out at the range but made daily trips to the nearest PX for supplies. These supplies normally consisted of caffeinated beverages, assorted junk food, and once, just once, a five pound bag of gummy bears.

There were seven of us on that trip so that worked out to just under 3/4 of a pound of bears each eaten over the course of three days. At the time, it seemed like a good, cost effective, and completely doable plan, right?

Wrong.

It turns out that no human, (keep in mind we were all in our twenties at the time), can consume that weight of gummy bears in three day’s time. By the second day, just mentioning the words “gummy bears”, would earn you a string of harsh words and a round of vigorous exercise. By the third day, we still had approximately half the bag and were flicking them at road signs, etc on the long drive home.

We were young, athletic, and normally could eat so much that buffet owners locked their establishment’s doors and hid in fear. However, when it came to vast quantities of gelled corn syrup, we apparently did not know our limitations.

Do you know yours? Do you abide by them? For me, living within the limitations brought on by MS is the harder and maybe more important part. Maybe that’s because in order to live within those limitations, we have to admit that they exist; both to ourselves and to others.

Once that’s done, the burden to work around and/or accomodate those limitations falls on everyone involved. Your real friends won’t mind, but they might look to you to admit you need an accomodation before offerring one.

Multiple sclerosis, because it is consistently inconsistent, complicates this by making my limitations different than they were this morning, yesterday, last week. That can make knowing and admitting to limitations extra hard. Doable, but hard and I’m not always successful.

If you have the perfect solution to adapting to a constantly evolving set of limitations, let me know, because, while it isn’t exactly a five pound bag of gummy bears, it is hard to swallow sometimes.

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Life with multiple sclerosis

Multiple Sclerosis and Postprandial Somnolence

Image from Kitchenatics.com

Here in the U.S. we recently celebrated our Independence Day. In typical, inexplicable, fashion, my friends and family went above and beyond to include and accomodate me. I’d like to pretend it’s because I’m so likeable, but it really is, inexplicable.

Nothing will show you who your true friends are quite like a chronic disease.

Typical of our celebrations, there were all sorts of entertainment, a chance to be among people you love, and food. Lots and lots of food, centered around copious amounts of grilled meats.

It would be a gross exaggeration to say that I ate my body weight in barbequed ribs; maybe the body weight of one of my kids. The point is, I ate a very big meal and paid for it by being sleepy and overly sluggish for the rest of the day. More so than someone without multiple sclerosis and that’s not an exaggeration.

Like many, I was prone to a “food coma”, properly known as postprandial somnolence, after a big meal long before I had my first MS symptom. The reasons or possible causes include things like post meal blood flow, time of day, size and composition of the meal, etc. However, people with MS seem to be more affected, (or perhaps, more commonly affected?) based on a few studies regarding MS and PPS.

Does this imply that I experience PPS because I have MS, or that I always experienced PPS and it’s just more noticeable/made worse by MS? Is it simply that, like with everything else, my body has to work several times harder to accomplish something and these are the results?

That may just be all philosophical. My personal takeway is that there is no part of my life that is unaffected by my PPMS. Not even gluttony, apparently.

Will I take precautions? Eat smaller portions? Eat less carbohydrates?

I’ll try, but when good food is involved….probably not.

That’ll show MS!

Categories
Background Life with multiple sclerosis

Bottled Water

Bridge across the Helmand River. Photo by Mohammed Omar Lemar

A long time ago……no, too depressing.

Some time back……no, too vague,

Once upon a time…..yep, that’ll do.

(Ahem) Once upon a time, I found myself with my ODA, sitting on a bridge over the Helmand River in Southern Afghanistan.

A pre-dawn raid was being conducted in a nearby village by another team and we were there to stop people from leaving the party early via the bridge. Due to the timing, we were forced to skip our morning coffee and as the sun rose and things calmed down, our Afghan Army counterparts broke out the necessary bits and began to brew up a pot of tea.

When it was finished, they offered us some and a teammate asked if it was safe to drink and did I want a cup? I replied that if it was made with bottled water or he saw it boiling, then it was safe and yes, I would very much like some morning caffeine. He went back over with the interpreter, who verified that it was indeed made with bottled water and returned with a cup for me.

As I sipped mine, I looked out over the river and watched two men washing a car in the shallows, a man and his son watering their goats by pushing the whole herd out onto a sandbar, and several women washing clothes while 3 children bathed nearby.

I was near the end of my cup, thinking that the tea had a rather earthy aftertaste and as I watched one of the goats lift it’s tail to relieve itself in the slow flowing water, I felt some grit between my teeth. The tea was sweetened with raw sugar, so an undisolved grain or two was to be expected, but I looked at the, now visible, bottom of my cup and upon examination, the grit was unmistakably sand, with a small pebble or two added in.

I waved the interpreter over and explained my concerns. He went back to ask our tea makers about the water quality. He was raised in Southern California and even though English wasn’t his first language, it was the one he slipped into as I heard him exclaim, “What??!! Oh, no!”.

Turns out that there was a bit of misunderstanding/misinterpretation on both sides. The water had come out of a bottle. An empty bottle that had been filled at the river’s edge, near the base of the bridge. It had also not been boiled because time was variable and the thought was that boiling would make it too hot to enjoy right away.

I dug through my bag and enjoyed a nice chaser of Ciprofloxacin and gave some to everybody that had drank the tea. Well, almost everybody. I didn’t get to everyone in time and that unfortunate soul had to suffer, both the wrath of the river and my less than stellar bedside manner, but that’s another story.

The point of my story today is to make an addition to a previous post about understanding the language and managing expectations between you and your healthcare team. The information you and your team share has to be clearly understood by both parties, as do any expectations. As the head of your own healthcare team, (which you should be, by the way), the responsibility falls on you.

Those of us with multiple sclerosis have, medications, therapies, assistive devices, etc, etc, to consider. It behooves you to understand and have a realistic view of the risks and/or benefits of all these.

For example, I have an intrathecal baclofen pump. The decision to have one implanted was not entered into lightly and was not made before weighing every expectation, possible benefit, and risk. In the end, it was this honest and, understood by all parties, “weighing” that made me decide to accept the risks and inconveniences in favor of the possibility of a better quality of life.

That’s an extreme example of both sides understanding the difference between bottled water and water from a bottle, but hopefully the point is made. When it comes to MS, make sure you understand what is being said to you and that what you’re saying is understood.

Categories
Life with multiple sclerosis

Beach

Photo by Michala Hofmeister

I am late with a post this week, but in my defense, I was at the beach with my family all last week and am still in lazy, vacation mode. I thought I’d better post something in the way of explanation, so as not to upset my tens and tens of readers.

I had a wonderful time and though my days of sun worshipping are far behind me*, I was still able to enjoy the beach and frolic…..(yes, I frolic), thanks to adaptive equipment (like the all-terrain wheelchair in the photo) and more importantly the help of my spectacular family.

I was once loathe to ask for help. I’m still somewhat hesitant, but that’s just foolish pride rearing its head. Truth be told, I never even had to ask for help. It came without bidding from the depths of my family’s love and good graces.

I’m not sure what I ever did to deserve it and I hope I make myself just a little worthy of it.

That’s it for this week. An explanation and a weak attempt at expressing my gratitude for family making the inaccessible…..accessible.

* I never really had sun worshipping days. Although it’s grey now, my hair was once blonde and my eyes are blue. We are of Northern European descent and are a pale, non-tanning people.

Categories
Background Life with multiple sclerosis

Ball Bearings

Not my hand Image from monkeyknuts.com

Before Special Forces, I was an FO (Forward Observer) in one of the Ranger Battalions. One of our primary missions was seizing airfields and since we lived on one, we had the opportunity to practice a lot. One particular evening, I exited the plane, said a prayer of thanks when my parachute opened (first jump….100th jump…I was always grateful), and prepared to land. It was not one of my better landings. My rucksack, at the end of its 15 foot lowering line, smacked into the concrete runway…..no, really…several other Rangers heard it “smack” and I smacked into the grass on the edge of the tarmac. I was fine, but when I collected my kit, a nice new piece of gear, in my ruck, that I had the “honor” of jumping in, had not survived the landing.

The next day the Company 1st Sergeant called me into his office and when I turned from closing the door behind me, I saw the broken piece of equipment sitting on his desk. He was known to smile on occasion, but this wasn’t one of those occasions.

A week earlier, he had dismissed that particular item as just another piece of FO nonsense, but as he shouted the name, manufacturer, and exact cost at me, I knew that he held it in higher regard than he had let on.

When he paused, I let him know that although I was a little sore, I was unhurt. He stared at me in silence, but his slightly opened mouth and the twitch below his left eye betrayed the fact that he was secretly glad I was ok. He even summoned my immediate supervisor and had him take me outside for an hour or so of vigorous exercise just to make sure. As the two of us left to assess my range of motion, the 1st Sergeant’s parting words to me were a resigned, almost awestruck, “If I gave you two ball bearings and told you to cross the street, you’d break one and lose the other.”.

Multiple sclerosis can be like that.

Ha! You were probably wondering how I was going to transition from rambling, boring story to something pertinent about MS.

Abruptly, apparently.

MS really is like that, in that many of its symptoms don’t seem to have a good option. Just a bad one, or a different, maybe equally bad one. Broken (dysfunctional), or lost.

Due to the effects of progressive multiple sclerosis, I have no use of my legs. Before I had my intrathecal baclofen pump implanted, spacticity kept my legs stiff, or sometimes spasming from hyperreflexivity. When they were stiff, I could pull myself to a standing position and spin slowly around into my wheelchair, like a clown tottering on stilts. Even if we call that “functional”, the spacticity was uncomfortable, to say the least, and really affected my sleep.

Once the pump was installed and the spacticity was controlled, my legs were limp. Comfortable, but even less useful. Sleeping through the night is nice and we are still adjusting the baclofen dose for maximum comfort with maximum function, but right now my legs are merely decorative.

So, dysfunctional, or lost? I chose lost, but I’d rather have functional. There wasn’t a third ball bearing. Break one and (or) lose the other, remember?

My abdomen was also affected by spacticity and now, by the baclofen pump. Unpredictable bowel and bladder function because core muscles are constantly clenched, or unpredictable function because everything is relaxed? I truly am better off relaxed; it’s the better choice of two bad ones, but it still isn’t the one I’d prefer.

When I could walk, I used a nerve/muscle stimulating device to counteract my foot drop. It did lift my foot, but it did it via electric stimulation, ie a shock. Plus, people would see the cuff on my leg and occassionaly assume I was under house arrest. (I guess I look like I should be….. at a minimum)

MS has choices…..just no good choices. Those are just a few examples. We, unfortunately, can’t choose to not have it. We’re just given our ball bearings and told to cross the street.

Categories
Life with multiple sclerosis

I Understand

Image from https://www.whats-thesayinganswers.com/i-understand/

I have never been shot.

I realize that if I didn’t have the background I do, that would be a very odd statement. As the team medic, I saw plenty of gunshot wounds and packed/bandaged a few, but thankfully, never had one of my own. I would venture a guess that between seeing, treating, or just talking with people who have been shot, I have a pretty good awareness of the experience. However, I don’t…….. I can’t really, understand it, because it’s not my experience.

When people find out that you have multiple sclerosis, many feel like they should say something and usually, they mean well. Certain things grate on me depending on their delivery, timing, my mood, etc and there will be plenty of posts on this blog covering them in detail. Today, I want to cover, “I understand”.

People say, “I understand, what you’re going through……how you feel……what it’s like…”, and so on and 99% of them probably mean well. There is that 1% that doesn’t, but they’re easy to distinguish because they usually follow it with something along the lines of, “If it was me, I’d do……”, or, “What you ought to do/try is……”. The implication being that whatever you’re doing now isn’t good enough. We’ll cover those people another time.

For the 99% that mean well, I’m genuinely grateful….. 99% of the time. Sorry, I’m not perfect. No, no, I can be honest. If you catch me at the wrong time, on the wrong day, etc, my mood may vary, but most of the time, I know what you mean when you say, “I understand”, and I’m grateful.

Thank you, from the bottom of my itty bitty, grinch heart, thank you. I know, you’re trying to understand; you want to understand and that means a lot, it really does. Here’s the thing. You can’t understand. I don’t even want you to understand (I spent a long time thinking I did), because that would mean you were just like me and I don’t want that for you. What I do want is for you to understand……that you don’t undertand and that that’s a good thing.

Don’t try to understand, but do try to be aware. Being aware is so much more than just knowing something exists. I say that because I once thought that was all it meant. Sure, I want you to know it exists, but I want you to be aware of what it does, why I cancelled plans at the last minute, why I keep dropping my fork at dinner, why a full day in the sun at the beach doesn’t sound exciting to me, and why I’m so different than your cousin’s, friend’s, uncle, who also has MS.

That last part is so important. I’ve mentioned before that I’m only part of one MS forum, the Kurmudgeon’s Korner. I think that one of the reasons it is a good fit for me, is that even though we all have MS, are very, very, aware, and can empathize with each other, we don’t presume to understand everyone’s unique experience with their unique disease process.

Maybe, “get”, as in,”You have to get MS to ‘get’ MS”, doesn’t mean understand completely. I have it and I don’t fully understand it. No one does and no, I don’t think that’s too bold of me to say. The best of my family and friends don’t understand, know they don’t understand, don’t try to understand, but are keenly aware of my limitations and the predictably unpredictable nature of the disease and inexplicably want to hang around me anyway.

As with everything I write, this is all just my opinion and as much as I’m loathe to admit it, I don’t know everything.

Categories
Background Life with multiple sclerosis

Lost In Translation

Not the uniform in 2006, but you get the idea.

The worldwide, special operations community is pretty small and over the years, I’ve been priviledged to work with and learn from, units from all over the world. The job attracts a certain kind of person, so, the personalities are very similar despite, the different equipment, tactics, and languages.

When it comes to language barriers, the right interpreter is worth their weight in gold, because they don’t just directly translate the words, but also the idioms, cultural cues, and even subtle nuances of body language and gestures. As you might imagine, this is vitally important when interacting with someone whose language you don’t speak, but maybe it’s just as important when conversing in a language thought to be common to both parties.

For example, my native language is English but back in Afghanistan in 2006, I learned that when among troops from the UK, we might all be talking in English, but we weren’t speaking the same language.

I didn’t know then, but I know now, that when a British officer slaps his knees, says, “Right!”, and stands up, that means the meeting is over and the annoying young American medic, (“Who the devil invited him to this briefing anyway?”), needs to stop asking questions and “what iffing” everything to death.

Later, his Sergeant Major had a “quiet” word with me outside the briefing room. He was of Scottish descent and though his body language was unmistakable, there were parts of his spoken English that were a little less clear.

When he began, he used many of the same words I had often heard in my own Army (universal, I guess) and I had no doubt that he was very put out with me. Then, in two separate sentences, he called me a “weapon”, so I began to relax, knowing all was well and that he obviously thought I was sharp, keen, and maybe even a bit dangerous.

I later learned that he did not, in fact, think that I was sharp, or keen. He did probably think that I was dangerous, but only to myself if I should ever be left alone and unsupervised…….. with string.

There was something lost in translation.

Remember when I talked about your healthcare team? You know, the one that I think you should be the head of? You might all be talking in English (or your native language), but you are probably not speaking the same language. I’m not suggesting that you go take a course in medical terminology, Greek, or Latin, but I am suggesting that it is very…..very important that you and your healthcare provider(s) understand each other completely.

The burden is on all parties involved, but it’s your health, so maybe it should be even more important that you understand fully and are understood fully. Like I’ve said before, both my neurologists are wonderful and know more about multiple sclerosis than I ever will, but they don’t have MS. As much as I wish it wasn’t, my MS is mine. It is unique to me and I’m (unfortunately) the expert on it. If you are not already and are capable of it, you should be the expert on yours. This includes communicating clearly about medications (including the cost and availability), pain levels, emotional changes, cognitive changes, quality of life issues, mobility problems, sensations and the lack thereof, etc, etc, etc.

Speaking the same language is even more important when communicating with your non-neuro providers. My wheelchair makes my multiple sclerosis “visible”, or at least quickly “discoverable”, but yours may not be. Your family doctor may need to be reminded that your MS related choking/aspiration risk is why you’re concerned about getting a pneumonia vaccine. Your orthopedic doctor may need to be reminded that your weak grip or inability to raise that arm on your more affected side is probably just MS and not because of a torn anything. Your optometrist needs to know that you’re seeing double, or having eye pain most likely because of your MS. Your physical terrorist……..I mean therapist needs to know when you have MS fatigue and that it’s not the same as being tired, weak, or having a bad attitude. (Mine does, I’m just giving him a hard time).

The list of examples goes on and on. Don’t let anything related to your health and well being get lost in translation. Please be clear with your providers and ask for clarity when you need it.

For the record, several of my providers think I’m a “weapon”, but they’re clear about it.