My exams may be unimpressive but I feel pretty lucky

“Your exam is really quite unimpressive”, says my neurologist this past week during my annual exam. These are the words I love to hear. Having someone tell me I’m “unimpressive” otherwise may actually hurt my feeling (wait, what? I’m not special?) yet during my exam, I love hearing this. Unimpressive means no new lesions per my last MRI, a normal physical examination (for an MSer anyway) and validates that the big T flowing through my veins every month is working and doing its magic.

Yes! Fist pump in the air.

The physical examination* is pretty standard for MSers. I read tiny letters on a visual chart, blink a bunch of times, watch the wand my doc presents in front of me go forward and backward, touch my nose with my index finger and then touch his finger, fold my arms and try to resist his push and then, subsequently, try to push him away, I (try to) listen for his snapping fingers coming closer to my ears (this part I always fail since I’m hard-of-hearing, ha-ha!), he uses cool instruments to test sensation on my feet, hands, arms and legs (think tuning fork), he uses a soft hammer on my knee to test for reflexes, AND THEN HE SCRAPES THAT BLUNT OBJECT ALONG THE BOTTOMS OF MY FEET – YOWZA! I abhor this part yet my doc always stresses that it is very, very important*. Then, I do a little walk down the hallway and voila! We’re done. The verdict? A normal physical exam.

Sure wish I had sneakers on during
the "scraping of a blunt object along the
bottoms of my feet part" of the exam!

And so it goes this way for the last 2 ½ years - he hasn’t been impressed with me for a while. Another fist pump in the air!

During my visits, my doc also interviews me about my symptoms, we chat about life in general, and he gives me advice. It is during this part of my exam that we talk further about ensuring my quality of life is productive and happy. He is a huge advocate in empowerment and not letting MS get in the way of doing things we love.

Over the last couple of years, after walking longer distances, my right leg has been giving out and I have had more difficulty walking. It’s become annoying, as you might imagine, and we discussed my taking Ampyra ®. It is designed to improve walking for those living with MS. Anyone out there on this drug? I’m considering taking it so I can go back to enjoying my morning walks, which I love, love to do.

So, will Ampyra help me walk (or run)
more like these guys? If so, I'm in!

We also talk about the importance of exercise and I mention that I haven’t been in the saddle for a while as life got busy, stressful, and there seems no time to enjoy a solid bike ride. He reminds me that now, more than ever, is a great time to continue riding, as it will alleviate stress. Exercise? Good for my MS. I needed the reminder and intend to jump back in the saddle this weekend. Muchas Gracias Doc!

New this year is the discussion about the very important neuropsychological functioning tests I recently took to identify any memory/cognition issues. My experience with this deserves a separate post entirely so stay tuned. I’ll write about the test, the results, and why it is important for folks living with Multiple Sclerosis. Until then.

In the meanwhile, I hope all is well with everyone out there and feel free to leave comments about your experiences during your neurological exams. How are your visits with the doc? Have you been prescribed Ampyra ®? How does it work for you? Has anyone else out there taken the neuropsychological functioning tests? We’d love to hear from you.

Cheers!

Christie

P.S.  the main point of the MS physical exam is to always watch out for the following:

1. Irregular eye movement
2. Any changes in the way one talks
3.  Lack of coordination
4. Sensory disturbances or, lack thereof
5. Changes in reflexes
6. Any weakness in arms and legs, including spasticity 

P.P.S. the purpose of the scraping a blunt object along the bottoms of our feet is to test for abnormal response (or, the Babinski reflex), for damage to major nerve pathways. To read more about this and other details of the neuro examination, check out MultipleSclerosis.net here .

Clouds come floating in

“Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.” - Rabindranath Tagore

I just love this quote because it serves as a great reminder that, yes, the clouds will roll in, bringing in the darkness that MS sometimes carries, yet, somehow, through the storm, there is something good and positive to look for.

Dwelling on all of the bad stuff that may come with an MS diagnosis will really drive us crazy as we chant “why me, why me.” Some things are not meant to be understood and we should try to move on. I do this by focusing on doing things that I enjoy. Try as I might, it does work.

The stuff I love includes riding my bicycle really, really fast, taking pictures, reading, writing, planning a trip, wandering and exploring, gardening, laughing, watching movies and all kinds of other goodies. In doing this, I forget for a few moments, hours or days, that I am someone living with Multiple Sclerosis. Any darkness hovering over me lifts and I move on, enjoying the gorgeous colors of life. Corny, I know. But, it works.

You see, by focusing on doing the things I enjoy, the burning sensation in my legs drifts away a little bit, the numbing and pain seemingly weakens. The fatigue may stay awhile but when focused on doing things I enjoy, like watching an awesome movie, that feeling of “I hit a brick wall” diminishes. Do my MS symptoms go away? Nah. They simply fall to the background as I focus on doing stuff that deters me from constantly thinking about on the numbing and pain that I always feel.

Receiving an MS diagnosis can be devastating. No doubt. It brings hardships that can be very difficult to endure. I think lessening the load is important as we try to remember that there is so much great stuff in life that can really bring us a lot of joy.

How about you? What are some things you enjoy doing? To help brighten your days and help you dwell a little bit less on MS symptoms? Would love to hear from you.

Best,

Christie

Floating away...

THE LESION JOURNALS | 5/16/14

feelings

(c) cgermans photography 2014

Floating away...

When asked, "how are you feeling today", it can be difficult to describe MS symptoms to others. I think pictures can sometimes help. This photo captures perfectly how I felt after a stressful week of scorching temperatures and a state of emergency. My brain filled with immense pressure and left me with the feeling of floating away.

I snapped this photo at the car dealership, while waiting for service, and noticed this yellow balloon floating on its own, in a small patch of blue in the midst of smoke-filled skies. I thought to myself, "that's my brain today" yet seeing it in that one clear spot in the sky also gave me hope that I would feel better soon. This, too, shall pass.

Take care,

Christie

Seeing MS - Exposing the Invisible Disease

"Most symptoms of multiple sclerosis go unnoticed by everyone except the person living with them. One day they can alter your memory, the next your vision. Striking without warning and leaving no trace, they are invisible." – Seeing MS

I recently came across this amazing creative project, hailing from our friends down under at the MS Society, Australia: Seeing MS. It features the work of nine photographers who worked with MSers to portray the invisibility of nine MS symptoms: fatigue, blurred vision, numbness, brain fog, spasticity, hot and cold, pain, dizziness and loss of balance.

We often talk about the invisibility of Multiple Sclerosis and this MSer: Photographer collaboration successfully and powerfully illustrates MS symptoms through photography. It is so difficult to describe what we live with and understanding our symptoms can be difficult for others, or non-MSers. These photographers have done a dynamite job depicting what the invisibility of MS feels like, a truly incredible accomplishment.

Take a moment to watch the video below, read through their site and download the app (cool filters!) to create your own image of what your MS symptoms are like.

To see the whole project and to make a donation to the MS Society, Australia, check out their site http://seeingms.com. 

Take care!

Christie

Top 5 myths about MS

Since my MS diagnosis in early 2010, I have become increasingly aware of the myths out there about life with Multiple Sclerosis – so frustrating! The list is long. At the end of this post, I include links to articles on the top MS myths, from writers over at CNN and ABC. Reading these articles inspired me to come up with my own Top 5 MS Myths, the ones that bother me the most.*

Myth 1: You will die from Multiple Sclerosis

Um, I don’t think so. This one really gets me mad, more so ever since I saw the cover of People magazine, highlighting Sharon Osborne’s reaction to her son’s MS diagnosis. Remember this? The headline read, “I won’t let my son die” and millions of Americans read about her fear that one dies from MS, as they waited in line to buy their groceries.

Sharon, let's debunk this myth!

Let’s set the record straight. According to the National MS Society, most people with MS have a normal or near-normal life. They claim that, “…only in rare cases, malignantly progressive MS can be terminal.” Our friends over at the MS Society in the UK echo this by telling us that, “People don’t die directly from MS, but if they are severely affected, the risk of dying from a complication related to MS (like an infection) is larger.”

Myth 2: MS is the same for everyone

It’s easy to quickly segment every MSer’s experience into one box of “this is what life is like with MS” but truth is, everyone’s Multiple Sclerosis is indeed different. Some of us have difficulty walking, some don’t. Some have a lot of numbness, some don’t. Some can ride a bike, some cannot. Some have mild paralysis, some don’t. Some MSers have many lesions on the brain, some have a few large ones along the spinal cord. Some have pain, some don’t. You get the idea. It’s different for everyone, kind of like a fingerprint.

MSers are like fingerprints, no two are alike

Myth 3: The MS drugs make you feel better

Man I wish this was true! The truth here is that the disease modifying drugs (or, DMDs) are designed to slow down the progression of MS, not necessarily relieve symptoms (although some claim that DMDs actually help with symptoms - this is awesome!). But not all is lost. There are options to consider that may relieve MS symptoms. Talking with your neurologist is an important first step because there are drugs available to help. For example, if fatigue is an issue, you might talk with your neuro about trying Nuvigil. Alternatively, many MSers adopt lifestyles of healthier eating, exercise and meditation to help relieve symptoms. Some even find occupational therapy useful. While this may not necessarily help with symptoms, there are certainly benefits to making MSers’ bodies stronger.

Tysabri slows down the progression of my MS but does not relieve my symptoms

Myth 4: MSers eventually require a wheelchair

This is a valid thing to worry about as some people with MS do live life with a wheelchair. It is important to highlight, however, that the majority of MSers do not become severely disabled. Here’s a stat for ‘ya, from our friends over at the MS Society in the UK, “…Two-thirds of people who have MS remain able to walk, though many will need a walking aid (such as a cane or crutches) either intermittently or permanently.”

Myth 5: MS causes people to stop working

I am an example of debunking this myth as I've been with living with MS for three plus years and work full time. I called in sick only once, on a day that fatigue hit me hard. I think it was the fifth time I called in sick in the nearly 20 years I've been with my company (gasp!). I kid. I think it was the sixth time I called in sick…

Many others also continue working after getting an MS diagnosis while others take a break and then return to work after dealing with a relapse. Some working MSers require accommodation (companies in the US are required to provide assistance for reasonable accommodation requests) while some MSers simply cannot work due to severe disability. The important thing to remember, I think, is to take your time in the decision to work or not to work.

Bonus Myth: There is a cure for MS

Me and 2.5M other MSers in this world really wish this were true. Unfortunately, there is no known cure yet we continue to have hope as doctors, researchers and others continue to research, research, research.

It’s all very frustrating, isn't  it? What tops your list as one of the biggest myths out there about MS and what can we all do to debunk it?

Take care of yourselves,

Christie

Sources:

Multiple Sclerosis Society, UK website, “What is MS? First Questions”

http://www.mssociety.org.uk/what-is-ms/information-about-ms/diagnosis/first-questions#life

National Multiple Sclerosis Society website, “What We Know About MS, FAQ’s” http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/faqs-about-ms/index.aspx

CNN inhealth.cnn.com, May 2013, “7 Myths About Multiple Sclerosis”

http://inhealth.cnn.com/managing-multiple-sclerosis/7-myths-about-multiple-sclerosis/

ABC News Go and Health.com, July 2013, “Top 10 Myths about Multiple Sclerosis” http://abcnews.go.com/m/story?id=19752065

*Disclaimer. I am not a medical professional nor do I claim to be. These are just my thoughts about things that I've heard and read through the years. If you experience any of the symptoms described here, please consult your physician and/or a neurological specialist right away. 

Niggling about MS weight loss, a recent obsession

I have become completely obsessed with my weight lately. Every time someone mentions to me “you are so skinny,” which, P.S., is so not true, I feel completely insecure, embarrassed and become slightly paranoid really because their comments usually follow with “not that you were heavy before…” Wait, what? These types of chats typically fuel my neurosis about my MS weight. I know it shouldn’t but I really cannot stop myself. I niggle and niggle about my weight, pre and post weight-loss.

It starts with…

Are people commenting on my weight loss because my business casual dress pants are falling off? Well, they are a little loose around the waist and in the butt. Sometimes I feel like one of those people in the weight loss ads, when they pull out their waistband to show off how much weight they’ve dropped. But maybe my loose pants are simply due to a bad dry cleaning experience. Yes, that’s it. My dry cleaners probably stretched out my pants. I have real facts to back this up people. There was this one time when I tried out a new dry cleaning place (read BIG mistake) and they totally stretched out my pants. Bastards. They didn’t even reimburse me after I complained.

The niggling continues with…

Did I look overweight to everyone before? What’s the deal with this? Why didn’t anyone tell me? Why don’t people ever say, “have you put on weight? Everything ok?” Did I grow to such a size that no one felt comfortable enough to tell me? Good grief. I thought people really cared about me, about my well-being! Fuggedaboutit. There is no way I would ever tell someone “you look great with all that extra weight, “ so why do I care so much that folks aren’t telling me?

So the niggling manifests…

Should I be worried that I am losing so much weight, too much weight? How much more can I go? What if this has nothing at all to do with my MS? Maybe something even more serious is happening to me. Naturally, I’ve been googling ‘weight loss and MS’ on our worldwide web yet don’t find many instances of this being a symptom for fellow MSers. Weight gain usually accompanies an MS diagnosis due to lack of activity which is completely normal because when you don’t feel good you don’t feel like doing much of anything except laying down to sleep. Am I right or am I right?

I jog down memory lane to my first year of my diagnosis. Well it’s not really a jog because this MSer does not run, ever. Not even in case of emergency. I’m more of a walk-briskly-kind-of-person. So, I walk briskly down memory lane and seem to remember gaining a little bit of weight back then. But really, who knows? I cannot remember a thing these days due to my brain fog constantly disrupting my memory bank. And it’s not like anyone would tell me I’ve put on weight so I really don’t have much to work with.

Not ever convinced that my weight loss is due to my MS, I continue searching the web for clues as to what’s going on. Google reveals other diseases that are correlated to weight loss. One in particular scares the shit out of me even though the practical Dutch in me realizes that I am not being very practical at all. I see cancer on my screen. It’s at this point I usually tell my sweetie that I am very concerned about my weight loss.

Me to My Sweetie: Should I be worried about my weight loss?

My Sweetie: No, not at all.

Me: Well I have lost like 20 pounds and everyone keeps telling me that I’m sooo little. My pants are falling off and this is really getting embarrassing at the office.

My Sweetie: So you’ve lost weight. I should be so lucky. We can go shopping to get you new pants.

Me: Maybe. I just bought a bunch of pants though and really don’t want to spend any more money. I’d rather spend money on fun stuff.

My Sweetie: I don’t know what to tell you. So we won’t go. But your pants are a little loose. You might want to wear a belt.

Me: That’s a really good idea. But I don’t have a belt. I’ll have to buy one of those too.

My Sweetie: okay..but I thought we weren’t going shopping?

Me: I’m not sure. But seriously, should I be worried about my weight loss?

My Sweetie: No, not at all. You’ve been going to the doctor’s and they aren’t concerned. They would tell you if there was something to worry about.

Me: I know, I know. You’re so right. You’re always right.

We usually go around like this every other day. I am also known to trigger these types conversations after hopping off the scale, which tells me that I weigh XXX lbs. Ha, ha! You thought I was going to tell you how much I weigh? Not a chance. I can tell you that it’s the same weight as yesterday. Or, did that needle dropped down a notch. I can’t tell because I’m near sighted and I’ve got optic neuritis in my left eye, which makes things look a bit wonky. So really, who the hell knows what’s going on?

I will tell you this. According to the NMSS, weight loss and weight gain seem to be related to MS. I am sure my weight loss has nothing at all to do with healthier eating habits, riding my bicycle really, really fast as often as possible, and consuming less alcohol.

How about you guys? Anyone out there experiencing weight loss or weight gain? I would love to hear from you and to hear about your stories.

Hope you’re well.

Best always,

Christie

Once you're in it, it's okay

I just finished Augusten Burroughs’ latest book, “This Is How: Proven Aid in Overcoming Shyness, Molestation, Fatness, Spinsterhood, Grief, Disease, Lushery, Decrepitude & More. For Young and Old Alike”. While I do not agree with his point of view on everything, one chapter in particular stuck with me, “How to Be Sick” and in that chapter, one passage hit home:

“Once you’re in it, it’s okay.”

Whoa.  Profound. How does Mr. Burroughs know this about me?

Is this true for you?

When I first was diagnosed, I suffered a lot with imagining how bad everything was undoubtedly going to get, allowing the anxiety to swell my brain yet when I finally reached that point, it never ended up being all that bad.  It was (and is) worse in my head.

Allow me to share. When the first pang of pain came on in my left eye and the colors got all whacked out, I thought my life, my visual and artsy life, was over. I manifested in my head that I would go completely blind in that eye or, at the very least, I would not be able to enjoy colors the way I “normally” did. I propelled my anxiety into even worse things and went bonkers thinking that I’d go completely blind in both eyes. I stressed that I would not be able to photograph or color or create or read or drive or watch the sunset or see my loved ones. Well, over a year later, I’m in it and it’s not at all what I feared. The optic neuritis never turned out to be as bad as I imagined. It was so much bigger in my head. While I have some compromised vision, it’s stable and manageable and not at all the utter dread I thought it would be.

I am now within my MS and it’s okay.

Three months ago I switched to a more aggressive treatment, ditching the daily injections of Copaxone for a monthly drip of the Big T. Tysabri. I remember my fears very clearly. I allowed the anxiety in my head to get massive. I imagined that the infusions would be excruciating. I never had an IV drip before so what did I know. In my head, I saw black and blue marks on my arm. I saw myself in pain with the insertion of the IV needle. I was convinced that I would suffer in such a major way that I would need sedatives to survive. Don’t get me started on what I imagined about the side effects. I built a horror story in my head.

I had my third infusion last week and it was another without incident. These infusions are so uneventful that I want to scratch my eyes out from boredom while I sit there for two hours. Not at all what I imagined so many weeks ago.

I am now within my MS and it’s okay.

Don’t get me wrong. I do realize the seriousness of my MS and am very aware of what may (or may not) happen to me and what symptoms I may still meet. But, as Burroughs describes in his book, I do not want to accept them in advance. And, I will try to not empower them. With this, I want to greet my new symptoms waiting to meet me. “Well, you’re new around here and I will adjust to you and then you will no longer be new but just familiar.” It won’t be long after that I say again...

I am now within my MS and it’s okay.

--

Is this true for you, this notion of building things up to be bigger in your head rather than how it turns out to be? I would love to hear your stories.

Hope you’re well.

C

When is it Time to Get the Blue Placard?

I knew it was only a matter of time before I made a very important decision. To do the handicap placard or to not do the handicap placard. That is the question. I have been wrangling with this one for some time, always coming up with reasons as to why my perfectly (dis)abled body does not need to be rescued by a privileged parking space. That’s how I see it.  Here’s why.

First, my symptoms are never that bad. At least that’s what I’ve always told myself. I can park in any spot in the parking lot of Bed, Bath and Beyond and capably walk to the front door. This always leads me to my second point, which is that I really do not want to take a handicapped spot away from someone who needs it more than me. How on earth would I be able to live with myself if I drove my car atop the asphalt spot painted with the universal disabled symbol and actually took it from someone else? I am not sure I could live with the guilt of stealing a spot when I feel perfectly fine. This line of thinking always ends with the forever silent, unmentionable realization that I am a disabled person who might need assistance one day too. 

Nope. Not this MSer. My third point I always think is a strong one. I need the exercise. Walking. Walking is good exercise. The farther out I park the car, the more exercise I will get. I often reason with myself. I do not need to shrink my already limited exercise routine by decreasing the steps per minute that would come from parking so close to the entrance of the mall. Ha, ha! Good one.

Lastly, the place where I need assistance the most is at work yet I adamantly tell myself that I am not ready to come out with my diagnosis to my office mates. Parking in the handicapped area will clearly force me out of the MS closet. I know what you’re thinking, ‘o readers of mine. How much of a secret could it really be if I write publicly on this blog? Minor detail. I remain inflexible. I cannot get a handicapped placard. Everyone will notice me stepping out of my car parked in the blue zone right in front of the office building entrance. It will be so immediately obvious. There is no way to avoid it. Everyone knows what kind of car I drive and they do not have a clue that I live with MS. I always ask myself questions. How is this going to work? Am I ready for this or should I dream up a story that I am recovering from a very serious bike accident? People will believe me, right? Yes I realize that keeping up with a story like this will be difficult and has the potential of getting completely out of hand as I will be forced to describe every elaborate detail of my crash. Besides, I can’t wear a fake cast forever. On the other hand, parking is so limited at my office that many of us are forced to park on a dauntingly steep hill that is an exercise routine all in itself. 300+ steps from the office front door to the top. I counted one day. I still conclude and tell myself: more points to add to my third reason above if I don’t get the placard, right?

This all changed with my recent relapse. Just last week my MS took me by surprise and rewarded me with new numbness, from my waist down. Not full numbness but enough to give the impression that I should probably stop drinking at noon. This is when I decided it was time. I wrote it down on my task list: fill out DMV form for disability placard.  I will let you know how my first parking experience goes when my pretty blue placard arrives in the mail. Stay tuned.

In the meanwhile, I am sure many of you have had similar experiences. I would love to hear from you, to hear your story. How was your experience in getting the disability placard?

P.S. If you live in California, you can fill out the “Application for Disabled Person Placard or Plates” through this link:  Application for Placard.

Best always,

Christie

The MS Buzz #6

The MS Buzz #6 is now available! Last week's chatter? MS Pain, 2011 Neuro Film Festival, MS Fatigue Webinar and Phil from the Amazing Race! Click here to read more: the MS Buzz #6.

What Living with MS Feels Like

I came across this article recently and think it's a great way to describe what it's like living with MS. I am not entirely sure who wrote it and the only information I have is that it may have been written by a woman named Cheree. So, thanks Cheree, for putting this together!     

When We Say We Can’t do Something Because We don’t Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below…

- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?

- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.

- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

- Tingling: Stick your finger in an electrical socket – preferably wet.

- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?

- Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.

- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

-Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzz

- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.

- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area.

- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.

- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there til tears appeared.

- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.

- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

- Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’ s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.

- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.

- Swallowing: Try swallowing the hottest chili pepper you can find.

- Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms

Welcome to our world. 

Then Finally…

After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.

Cheree’s Added Note: This may sound harsh or exaggerated, but trust me when I say that it’s all true. MS is most times considered the ‘invisible’ disease because alot of us with MS can walk around looking like we’re ok! What you don’t see are the rough times spent at home, alone, at night, when MS causes us the most pain. The next time you see someone with a chronic illness and see them smiling, just remember that they’re probably dealing with a whole lot more than the eye can see…and let them know that you care!