Explaining MS Fatigue

November 6, 2014

Ninety percent of patients with MS suffer with fatigue. Fatigue is an extremely debilitating MS symptom and difficult to manage.

MS fatigue is more than being tired from a lack of sleep or a very busy day. It is a direct result of the disease itself, and is easily intensified by the other MS symptoms (such as extra energy required to walk), external factors (such as heat or dehydration), and health issues (such as colds/viruses, being overweight…).

Being an invisible symptom, fatigue is hard for people without MS to be aware of it, understand it, and realize the severe limitations it can impose on MSers.
I started an MS group discussion on LinkIn entitled “How do/would you explain your MS fatigue to people to try to make them understand it?” Over fifty comments were received to date, and here are some of the comments:

“I tell people that it is like the exhaustion you get when you have the flu- only multiplied by 20 and NEVER goes away…”

“I heard it explained once and it seemed exactly right. MS fatigue is using every ounce of energy in your body just to breathe.”

“Add 5 lbs. weights to both biceps, forearms, calves, thighs…etc.”

“There is no way to explain it properly. Everyone still thinks it’s just plain tiredness. They don’t get that fatigue is totally different. I once said “when I am fatigued and am in bed, sometimes I feel that peeing the bed is my only option.”

“I ask them to imagine they are coming down with a flu/cold, then recall how tired they are.”

“There is no explaining to others why my body needs to sleep when I have only been awake a short bit.”

“I liken it to hitting a brick wall so hard that you don’t bounce back but instead just slide to the ground and not able to pick myself back up.”

“People just don’t ‘get’ the difference between extreme fatigue and general tiredness – some think they are feeling the same as you are but they don’t know the half of it!!”

“Thank you guys so much for this discussion! I hear all the time “Well, I have trouble sleeping too… maybe you should just go to bed earlier.”Errrrgh! It’s not like that people!

“I tell them that my best day fatigued (tired) is like their worst day. Then they seem to get it.”

The truth is, most people don’t get it. But the upside is that our neurologists and peers DO get it, and that’s where we can get our comfort. And fortunately, fatigue is a symptom that is finally recognized by Social Security when applying for disability benefits.

For those that don’t get it, you can try handing them a copy of this post or a previous post of mine entitled “Fatigue and MS”. It never hurts to try.

www.DebbieMS.com
Author/MS Counselor/Living with MS

What MSers Really Need from Others

“The chronically ill, too.”

Even though this post was written for a MS Blog, the following list can apply to supporters of patients who are chronically ill. As an MS patient myself who was trained as a MS peer counselor thirty years ago, I found myself talking with and listening to patients who were chronically ill with something else.

This list is for family, friends, co-workers, health care professionals…i.e. the people we associate with in our lives. While it seems to be simple and just common sense, it is amazing how many folks say the wrong things or don’t even know what to say.*

1. Empathy vs. Sympathy
Most MSers don’t want you to feel sorry for them. They want you to try and understand MS and their symptoms/problems. Visualize putting yourselves in their shoes.

2. Listening vs. Talking
Sometimes MSers like to talk about MS and sometimes they do not. If they wish not to talk or get emotional, do not take it personally or compare them to others. More often than not, they need others to listen to them.

3. Inspiration vs. Reality
Inspiration is vital and wanted. However, there are times when MSers are so sick or fatigued, they don’t want cheerleading, humor, or advice. Give hugs and be sensitive to their feelings.

4. Knowledge and Support
The more accurate knowledge that is obtained from reliable sources, the less fear there will be. The more support that a MSer has from whom they interact with, the easier it will be for them to manage their MS, lives, and adjustments. What kind of support? Just ask the patient, or offer to do something to make their life easier (like make a meal, watch kids, do laundry…).

*Here is a link to view my background/credentials http://debbiems.com/about-debbie_269.html

www.Debbiems.com
Author/MS Counselor/Living with MS

The Optimist and the Pessimist

“Attitude is Everything”


August 6, 2014

I am an optimist. My husband is a pessimist. If I say “wow, the sky is so blue”, he’ll say “I hate the sun, I like it cloudy.”

They say opposites attract but sometimes I don’t know how I have survived 36 years of marriage with a person who is a pessimist.

My husband and I just got back from a mini camping trip in our RV and truthfully, it really was frustrating. It rained constantly for almost the entire trip, so we were confined to stay in the RV. For me, it was cozy listening to the rain while reading a novel and watching movies. For him, he seemed to complain about everything and didn’t even want to play cards with me.

After being in this situation, I started writing a post about why the need to vent from time to time is essential to your health. This morning I was going to finish it when I came across this article about optimism and pessimism in the newspaper. I felt like it was written for me.

This article is so important, I once again decided to postpone my post-in-process and share this. Not only is optimism necessary to survive life, it is necessary to survive MS. Pessimistic people drag you down, something that is not good if you are trying to cope with a chronic illness.

Optimism trumps pessimism in workplace, life

President Harry S. Truman once said, “A pessimist is one who makes difficulties of his opportunities, and an optimist is one who makes opportunities of his difficulties.”

Which do you think will reach their goals, live a happy life and achieve their dreams?

Imagine interviewing two people who have identical skills, but one is always grumbling about how unfair life can be, while the other one talks about what wonderful possibilities exist.

Naturally, you would gravitate toward the optimist. If you choose the pessimist, you would be setting yourself up for plenty of aggravation and disappointment, not to mention the negative impact on your staff and customers. Pessimism can bring everyone down, not just the person with the negative attitude.

Pessimism is nothing more than self-sabotage. Expecting only the worst is not being realistic. Realists hope for the best but prepare for the worst. Pessimists can’t imagine the best, so they prepare for the worst. And then if the worst never happens? Pessimists often find the worst possible result simply to prove that their concerns were right.

The question becomes, would you rather be right than be happy? That’s not being realistic, either. That’s being self-defeating. Pessimism can rob you of your energy, sap you of your strength and drain you of your dreams.

Optimism is the remedy. Optimism doesn’t mean pre¬tending life is always wonderful. Optimism means embracing reality. You accept that there will be bad days, but also good days. When you’re grounded in reality, you know where you are and how far you need to go. Once you know how far your goal may be from where you are, optimism can give you the motivation to make plans to get to where you want to go.

Pessimists see life as one problem after another. Optimists see life as one opportunity after another.

How you look at life can drastically affect how much you enjoy your life. Optimists expect the best out of life.

Does it make sense that pessimists tend to blame others or circumstances for their failures?

Optimists help create some of the good they come to expect, so they are probably right more often than not — and they don’t waste time worrying about what they’re not right about. Optimism relaxes people. When we’re relaxed, there is better blood flow to the brain, which results in more energy and creativity in your life.

There is virtually nothing that you can’t do if you set your mind to it. You cannot control events in your life, but you can control how you react.

Do you want to be a pessimist and have no hope for a better future? Or would you rather be an optimist and believe you can achieve a better future?

Mackay’s Moral: Attitude is the mind’s paintbrush — it can color any situation.

Harvey Mackay is the author of the New York Times best-seller “Swim With the Sharks Without Being Eaten Alive.” He can be reached through his website, harveymackay.com, or by e-mailing harvey@mackay.com.

In my situation, I learned years ago how to ignore or escape my husband’s negativity. While I succeeded most of the time, the times that I couldn’t get away from it caused tremendous stress. Not only did the stress impact my MS symptoms negatively, it would make me moody and stifle my motivation to move forward. Fortunately, I am a strong-willed person and almost always found alternative sources of optimism (e.g. friends, enjoyable interests/activities…) to lift me up before I got dragged into the depths of an abyss.

Now, in all fairness, my husband is a great guy and has many positive attributes. None of us is perfect. I am a sensitive person who cries easily or pouts. Personality traits are difficult to change; a person has to recognize a change needs to be made and then take great effort to make the changes. But this is a slow process that requires much patience.

If you don’t live with a pessimistic person, it’s easy to get away from him/her. An optimist living with a pessimist will be a lethal combination if coping mechanisms can’t be accomplished.

I know from experience. And I know that one of main reasons I have survived managing my MS is because I am an optimist. Attitude is everything.

www.DebbieMS.com
Author/MS Counselor/Living with MS

Important Things Others Should Know about Chronically ill People

“An Educating Tool”

I was in the middle of writing a blog about what folks with MS really need from others when I came across this pin I found on Pinterest. What an extraordinary pin to share with my peers!

Because I still look so good after all these years and rarely complain, people around me sometimes still don’t seem to understand my difficulties since MS is invisible, unpredictable, and interfering. And it is probably because I am so good at the way I manage this disease, despite the fact that I use a wheelchair. I make it look so easy, when the truth is, it can be a real bitch.

For people who are just learning about how to live with a person with MS or who is chronically ill, a copy of this will be a good, educating tool.

“People with chronic pain and illness want everyone in their lives
to know these important things about them…”


1. Don’t be upset if I seem on edge. I do the best I can every day to be “normal”. I’m exhausted and sometimes I snap.

2. I find it very hard to concentrate at time for a lot reasons. Pain, drugs, lack of sleep… I’m sorry if I lose focus.

3. Letting my loved ones and friends down by cancelling plans is heartbreaking to me. I want more than anything to be as active as you and do the things I used to do.

4. My health can change daily. Sometimes hourly. There are a lot of reasons this happens. Weather, stress, flare-ups…I can assure you that I hate it as much as you do.

5. I don’t like to whine. I don’t like to complain. Sometimes I just need to vent. When this happens, I am not asking for pity or attention. I just need an ear to bend and a hand to hold.

6. During rough times, I find it hard to describe how bad it is. When I say “I’m fine” and you know I am not, it’s okay to ask questions. Just be prepared if the flood gates open because “I’m fine” is often code for “I’m trying to hold it together, but having a rough time. I’m on the edge.”

7. If I am hurting bad enough to tell you about it without being asked, please know that it’s REALLY bad.

8. When you reach out to me with suggestions to help me feel better, I know that you mean well. If it was as simple as popping a new pill, eating differently or trying a different doctor, I’ve most likely already tried it and was disappointed.

9. All I truly want from you is friendship, love, support and understanding. It means everything to me.

10. When someone gives me a pep talk, I understand the sentiment. Chronic illness just doesn’t go away. I wish it did, too! I appreciate your wanting the best for me, but save the pep talk for the gym or the kids’ next volleyball game.

11. It hurts worse than you can possibly imagine when I’m thought of as lazy, unreliable, or selfish. Nothing is further from the truth.

12. I do a lot of silly things to distract myself because any part of my life not consumed with pain is a good part.

13. The simplest tasks can completely drain me. Please know that I do the best I can every day with what I have.

14. Come to me with any questions you may have about my condition. I love you and would much rather tell you about this face to face without judgment.

After all these years I have lived with MS, I may put this on my refrigerator at times; or give a copy of this to the forgetful numbskull or the insensitive ostrich that has their head in the sand! (Yes, I think we all have a person or two like this in our lives.) And, the next time someone says “What’s wrong with you?!” I think I will tell them to read #___.

www.DebbieMS.com
Author/MS Counselor/Living with MS

MS and Your Relationships

“Strategies & Tips”

On February 15th, I facilitated a workshop entitled “MS and Your Relationships” in Phoenix. The workshop was part of Genzyme’s One Day for Every Day Event. This is a summary of that workshop, as I want to share this information with a larger audience.

I began by telling the attendees that a one-hour timeframe was not enough for this big, important subject. It’s bad enough that everything about MS is complex, from the diagnosis to the symptoms; after all, the nervous system is involved. But people are highly complex too because of their thoughts and emotions. So when you put the two subjects together—yikes!!

Just about everyone in the room with MS was there with someone else—either a spouse, sibling or friend. This was good because everyone living with the MSer is also living with MS. And that goes beyond the immediate family.

My presentation was to discuss communication strategies and tips to create a foundation of open and honest communication. I adjusted this goal to first, make the group interactive, and second, address two other critical aspects of relationships: support and knowledge.

• Support and knowledge reduce the fear one has with an MS diagnosis. The more you have of both, the better chance you have to survive this disease. One has to be careful though where one gets the knowledge since because of social media, there is much information available today that can be overwhelming and inaccurate.

• Since MS is still a lifetime illness, knowledge and support will change many times as time marches on due to disease progression and lifetime changes that will occur.

• Everyone in the room needs it; everyone outside the room needs it. What is NOT a strategy? Doing nothing—doing no communicating, obtaining no knowledge, getting no support. Anyone dealing with MS will not survive it if none of these are done.

Who are the relationships the person with MS interacts with? What do we say to whom? Who do need support from?

• Family: partners, children, parents, siblings (Needs communication at appropriate level; “show & tell” is a great game to play to help a non-MSer understand invisible symptoms. For example, have men walk in spike heels to understand balance issues; put 10-lb, weights around ankles to experience walking heaviness and fatigue; put a knit glove on a person and have them find objects in a purse like tissue, quarters, etc.)

• Friends (How much you share depends on depth/closeness of friends.)

• Workplace people: boss, colleagues, human resources (very subjective area—many reasons to disclose or not to disclose)

What groups were missing from the power point slide in the presentation that are just as important?

• Peers (They are a lifeline for both MSers and non-MSers—someone you can easily relate to because they are “in your shoes.”)

• Healthcare team (Make sure all of them understand and have experience with persons with MS!  For example, a physical therapist needs to understand the effects of heat and fatigue of MS. Also, you need to like and trust your neurologist; if you don’t, fire him/her and get another one, as this is a lifetime, crucial relationship.)

• Strangers (I have had to ask strangers for help many times since I had mobility problems since my early years. For example, helping me reach something in a grocery store, or assisting me in a dressing room. People in general–in all of the above groups too–like and want to help. It makes them feel good, and they hate to see someone struggle. Personally, I will let people help even if I don’t necessarily need it!)

• Pets (Wow—they understand/comfort us the most, don’t they?!)

I had all eyes on me from my audience, and many nods or claps. It was interesting to see hands go up when I asked how many felt they needed better support in various groups or who didn’t like their neurologist.

Talk is good, even if it doesn’t solve anything. It feels good to get things off our chest. I have an old MS buddy who called me recently and asked, “Can you talk to me? Is this a good time?” But if there is someone like a stranger or a fellow employee who asks you something that you don’t want to talk about, just simply say: “It’s a long story…”

Venting is also good, as long as it doesn’t hurt anyone. For example, when I get stressed out or frustrated, I cry or call a close friend of mine who is a peer. My husband on the other hand will yell or throw things in an un-harmful way. We go our separate ways to vent because I don’t like his yelling, and he doesn’t like my crying. When the steam is released from the pressure cooker, everything calms down. Holding things inside without a release is dangerously stressful, and we all know how stress negatively affects MS.

What if the people we need to talk with will not communicate or talk? Then it is essential to find someone who will…

In the beginning of my MS, my family was in denial. I went straight to the local chapter of the National MS Society to get literature and meet others who had MS. Later, when both my husband and my mother wouldn’t talk to me about my MS, I went to a therapist who understood MS to help myself deal with these two close people in my life. Years later, I went to a therapist again when deciding whether to give up my career. My MS was aggressive and it was progressing rapidly.

There’s no question that people living with a person with a chronic illness such as MS, is also living with it too. While open communication is essential for all involved, it unfortunately doesn’t always happen effectively without having an “outside” person/s involved. Perceptions are different, emotions are involved, and more often than not, negative consequences result. Ideally, partner/family counseling is essential in most cases.

Realistically, there are obstacles with professional counseling. The first is that many people–whether they have the illness or not–do not want to go to counseling. This was the case in my own personal situation and though I pleaded with my family to go, it didn’t happen. So I went to counseling on my own and fortunately, it helped me tremendously to figure out how to handle my family relationships and how and where I could get support that I needed. Secondly, I believe it is imperative that a good, reputable therapist who UNDERSTANDS MS is found. MS is complicated in many ways, is generally progressive, and currently lasts a lifetime. Finally, many people unfortunately cannot afford therapy; however, many county health departments have resources available for financially strapped people.

So what are strategies to foster healthy communication?

• Should you always be honest about your feelings? When I asked everyone in the room if they were ever dishonest about their feelings, every single hand went up! It obviously is a judgment call, depending upon the people involved, and their personalities. With your healthcare team, you need to be honest. With everyone else, the group agreed that you can’t be a constant complainer or whiner. Be selective with whom you are comfortable with and trust to discuss your concerns, problems, fears, etc.

• Keep a journal about important things that need to be communicated, whether it is info to discuss with your doctor, modifications that need to be made at work, or just notes about what you want to talk about.

• Pick an appropriate time and place for a discussion. Trying to talk when one is tired, hungry, or stressed out will be a disaster. Try to be in a relaxed frame of mind, when interruptions will not occur.

• Be respectful of what the other person is saying—this is a two-way conversation. Actively listen to each other, and avoid accusations, finger pointing, name calling, yelling, etc. How and what we say matters, as well as the tone that we use. Avoid negativity.

• Two-thirds of communication occurs through body language. Your posture, facial expressions, eye contact, etc. speaks volumes. When someone rolls their eyes or points a finger at you, what does that indicate?

• Ask for help and ask to help. People want to help, and people need help. Be explicit or give examples when talking about this to help clarify your statements. Ask questions and share perspectives. Try to put yourself in the other person’s shoes. And remember—none of us are mind readers. Not only are you communicating here, you are educating.

• Everyone should show and express their gratitude often. Give complements.

• A hug, kiss or smile goes a long way.

• From experience, I believe that we MSers set the tone and comfort level. If we are relaxed and open, the other person will be too.

• My personal advice to all: show and give empathy, not sympathy.

• Use humor when appropriate. Many times, the subject being discussed can be very sensitive and not funny at all. Or, it is hard to be humorous when you are not feeling well.

• Avoid arguing and be patient. If an argument develops or patience is lost, quit the discussion and regroup later.

• Always try. If it doesn’t work, try something else.

Well we ran over our one-hour timeframe, which was no surprise. But it was a start, and I always say that “Getting started with anything is the hard part.” Now everyone has a framework or some ground rules they can try to use to enhance their communication, support and knowledge.

At the conclusion, I gave everyone a copy of a previous blog that I had written entitled “MSers and Their Loved Ones.” http://debbiepetrina.authorsxpress.com/?p=61

www.DebbieMS.com
Author, MS Counselor/Living with MS

Please visit my website for more articles, videos, my book, MS information and resources.

 


Managing Overwhelming Circumstances

“Speak Up, Nicely.”

August 13, 2012

It was 117 degrees yesterday, and the weather prediction doesn’t expect the temperature to go down much over the next week. My family from out-of-state is staying with us for the next ten days. Between the heat, fatigue and overwhelming activities under my roof, will I manage? Yes.

How? I learned when to say “yes”, “no”, and “would you please…”

This wasn’t something that came easy to me when I was diagnosed with MS. I was always a very independent person, offering my help to others. It took a long time to use these words in the right manner and circumstance. After all, we are talking about a change in behavior. Changes in behavior do not happen overnight, but it can happen if you want them to.

For me, it wasn’t a conscientious decision on my part to ask for help, accept help, or set limitations. The mounting of excessive fatigue and other interfering symptoms forced me. If I didn’t succumb to changing my behavior in this way, I would not have survived my MS.

Not only is it essential to me, it’s essential for my friends and family, too. In the beginning, they wanted to help, but were cautious about what to do. So I learned to open my mouth in the correct way. I set the tone: if I am comfortable, they are comfortable. If I tell them what I need (or don’t need), or what to do (or not do), they are glad for it. Everyone benefits.

It was difficult in the beginning for me to say “yes”, “no”, or “would you please…” But once I got started, it got easier.

Here are examples of this week so far:

“OK. You know the rules. Mi casa es su casa. Help yourself to anything you want and clean up after yourself.”

“Would you excuse me, please? I am so tired and need to lie down for awhile.”

“Yes, you can help—could you finish cutting up these veggies? And can someone else take out the garbage?”

“It is SO hot. Would you please get me an ice pack from the freezer—there’s a crowd in the kitchen!”

“Would anyone mind going to the store? We need to get…”

“No. As much as I would like to go, I better not. It’s too hot and I’m too tired. When you are gone, it will give me a great opportunity to sneak into bed and take a nap.”

“Yes, you can run the vacuum for me!”

“No, you guys go ahead and watch the movie—I’ll watch it another time. I’m going to hit the sack early.”

It works beautifully. My family is great–willing to pitch in, and understanding my need to take care of myself. They love to help me, and I love their help and appreciate their understanding.

Gone are the days when I felt that I needed to get up first in the morning to make coffee. Gone are the days when they felt uncomfortable as they watched me struggle trying to fix a meal for them. Gone are they days I felt too proud to ask for help. Gone are the days when they felt intimidated to offer help.

So, do yourself and everyone else a favor: Speak up, nicely. It is a win-win situation.

www.DebbieMS.com

MS: Reaching Out for Help

“The Value of a Peer”

June 25, 2012

When I was diagnosed, one of the first things I did was talk to a peer.  Peers are priceless; they help immensely.  There is an instant connection and understanding, bringing both comfort and knowledge.

I could have never survived my MS if I didn’t reach out to peers, and I love it when they reach out to me.  Even as an old veteran of MS, I still find myself reaching out to peers for help and guidance.

Recently, I reached out to a MS peer for a different purpose.  I contacted Sharon Baldacci, author of A SUNDOG MOMENT.  Sharon has lived with MS for thirty-one years like me, and I reached out to her to review my new book, MANAGING MS:  STRAIGHT-TALK FROM A 31-YEAR SURVIVOR.

She responded to my email the very next day and agreed to read it and do a review.  I was shocked at first at the quick and agreeable response but I shouldn’t have been.  There is a camaraderie that exists between MSers.

Over the next few weeks, we emailed little comments back and forth.  Sharon just sent me her review, mentioning that after all these years she learned something new about an MS symptom she deals with from my book.  I, in turn, learned a few things from her; and I found another MS friend I can share with going forward.

Here is Sharon’s review of my book:

June 21, 2012

When I was asked to review Debbie Petrina’s new book, MANAGING MS: STRAIGHT TALK FROM A THIRTY-ONE-ONE YEAR SURVIVOR, I had to chuckle. I too have lived with this illness just as long and didn’t think it was possible to learn anything new.

Boy, was I wrong. This small, easy to read book is a wealth of matter-of- fact information interspersed with her memories that add credibility. I learned more about spasticity here than I knew and also the word `clonus’ that describes exactly what my weaker leg does sometimes. She adds practical tips for dealing with so many of the symptoms, and side effects of medications. The chapters are broken down into advice for the newly diagnosed, symptoms, grieving, heat, and what you can do about the variety of problems that come with MS. There are chapters about dealing with people (and how they deal with us) as well as what she calls the elephant in the closet – suicide.

She also makes it clear that it is the person with MS that is in charge of all decision-making, not the doctors. The doctors are there to give all the information needed for decision-making. She explains clearly why and how she made difficult decisions for her and her family and how it has worked out all for the best. She strongly encourages everyone to do the same. This is an empowering book that doesn’t sugar coat anything but makes the endless details manageable – from her 31-one years of experience. I felt like I was learning from an old friend over a cup of tea.

This should be required reading for doctors, health professionals, MS patients and their families.

Sharon Baldacci, author of A SUNDOG MOMENT

It’s incredible that the internet exists now to offer forums for peers of any situation to connect with each other.

Free.

Everyday when I give thanks in my prayers, I never forget my gratitude to all the MS peers I have interacted with over the years.

www.DebbieMS.com

What is Multiple Sclerosis (MS)?

“The Misunderstood, Ignored, and Forgotten Disease”

April 30, 2012

I recently asked the question “How do people without MS react to you?” to an MS discussion group I belong to.  Their responses?  The same I have been hearing for decades:  We feel misunderstood, ignored, and forgotten by so many people.

Why do we feel this way? 

First, on the outside so many of us look good unless we have some kind of walking aid to indicate otherwise.  We’re not bleeding, we have good color in our faces, and we are not coughing or blowing our noses.  When we look good, people automatically assume that we are good.  I’m in a wheelchair, but I still look good and completely normal.  If I would use a store’s scooter instead of my own, I would get dirty looks.  I’m misunderstood.

But very often we are not good because so many of the symptoms are invisible.  Pain, tingling, numbness, fatigue, dizziness, tightness, depression, blurry vision, balance, coordination—the list is endless.  These symptoms interfere with everything we think, say or do.  They are annoying; they hurt; they are frustrating; and they make us crabby. For persons with MS that do or do not show visible impairment or walking aids, these symptoms are very disabling.

Invisible symptoms are difficult to describe, and when we tell someone about them it’s hard for them to understand or empathize.   Sometimes we use examples like “When I walk, it feels like I have a ten-pound weight on my ankle”, “It’s like when your arm falls asleep but never wakes up” or “My hands look normal, but I can’t button buttons.”

When we see these same people again, they forget that we have these symptoms because they are invisible.  If we talk about them, we sound like complainers.  Unless we complain about these things often, who would know we have these problems or that they continue to plague us?  And who wants a complainer around all of the time?

Fatigue is the hallmark symptom of MS.  It is a universal complaint by over 90% of MS victims.  It doesn’t matter if the case is mild or advanced.  It doesn’t matter if one had a good night sleep or if the MS is not currently active. Fatigue is always present with MS, 24/7.  Why?  Fatigue exists because MS is a disease, a chronic illness, that causes other symptoms such is walking problems to intensify.  Constant fatigue leads to our moodiness or depression.  So when somebody suggests we need to get out and take our mind of things, they truly don’t understand why a couch or bed is more desirable to us.

Many times people without MS are uncomfortable around us because they don’t know what to say or do.  Or because of our moods or a previous bad experience, they are unsure what kind of a response they will receive.  Others just can’t deal with it perhaps because of personal feelings like guilt. Therefore it is often easier for them to just ignore it.

Now this can create a catch-22 situation.  MSers don’t want to complain about it; and non-MSers forget/ ignore the MS or say something that clearly indicates their misunderstanding of it.  Here’s an example of a personal experience:

I’ve lived with MS over thirty years, and my 80-year old mother will still tell me about all of her senior buddies who get out there and bowl and do all sorts of things despite them being in a cast or using a cane.  Or, how she has to get up every night now to pee because “that’s what happens when you get to be my age.”

Well, mom (I think to myself), I have been getting up every night to pee for the last twenty-five years.  In fact, I have had the problems of an 80-year for the last three decades of my life and I am only 57.  Did you lose your ability to have an orgasm at the age of thirty?  And, at least that guy in the leg cast will get it off in a month.  With regard to bowling, I haven’t been able to bowl since I was thirty and not only because I was using a cane.  With my fatigue, balance, and coordination problems, I would have fallen on my butt every time I threw the dang ball.

Then there are the countless misconceptions because of lack of understanding.  “If you had your leg removed and got a prosthesis maybe you would walk again.”  “Did you ever look into surgery on your spinal column?”  Uh, hello…we’re talking the entire central nervous system here!  I actually responded once that “a new brain and spinal cord transplant may help but they haven’t figured out how to do that yet.”

Finally, many of us with MS feel that the news media never give enough attention to MS like they do with cancers, heart, arthritis, etc.  Or if they do, it is usually done with snippets that really create more misunderstanding than understanding of it.  I bet if they understood MS better they would find plenty of interesting stuff to write or talk about.  Or if they talk to any of the half million people and their families in the US that have MS, a really good TV drama series could be launched.

So, what can we do about it?

We need to be educators, communicators and advocates to everybody, everywhere—beginning with the basic question and a simplified, clear answer.  Forget the boring textbook medical details.  Something like this:

What is MS?

Multiple Sclerosis is an autoimmune, inflammatory disease of the central nervous system, which includes the brain, spinal cord and optic nerves.  That means that potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.

It is not fatal, contagious, or congenital.  There is no cure; the cause is unknown. It is generally progressive.  That means that because there is no cure, the majority of persons afflicted (2.5+ million worldwide) will become disabled during the decades of their lifetime with no way to fix the damage.  Current estimates are that 20-25% will end up in a wheelchair.

From the day those of us received our diagnosis, we have no idea what course our disease will take.  What will be affected, in what way or how rapidly will we be affected, and how disabled will we become? MS is unpredictable and uncontrollable; the losses never stop, the grieving process never ends.

There are new drugs that are trying to slow the progression, and meds to help with relieving symptoms and shortening relapses.  But they all have side effects. Nothing is available yet to prevent MS or restore most function lost resulting from its damaging effects.  However, there are many things one can do to manage it effectively.

Peer-to-peer, we understand it, share our stories and how we cope with MS. We count on our peers, close family/friends and MS organizations for knowledge and support to help us manage it during our lifetime.

But we would like more.  We want everyone to know and understand what MS is all about, not just be aware of MS being something that people walk for or bike for.  The more people that UNDERSTAND multiple sclerosis, the less we with MS feel we’ll be misunderstood, ignored and forgotten.

Let’s all get started now:  hand, send or post this article to everyone you know.  Do it today!

www.debbiems.com

 

 

 

MSers and Their Loved Ones

“Two Sides of the Same Coin”

March 5, 2012

Both sides are living with it. Both sides have a different perspective of it. For a non-MSer (family, friend…) it is very difficult if not impossible to understand MS in the same way as the MSer because they walk in separate shoes. This is an extremely frustrating dilemma.

People who have MS need help and support; family and friends want to give help and support. How do you build a bridge to bring two towns across the river from each other together?

Communication and education.

In the beginning when a diagnosis is made, most people want to read about MS and learn what it’s all about: What is the cause? The symptoms? The treatments? The prognosis? That’s a normal and a good start, and a necessary one, for all involved. Sometimes a spouse, close friend or family member doesn’t do that or want to do that; then it is up to the person with the MS to find the ones that do, including reaching out to MS peers. Without people support, an MSer won’t survive their illness well.

During the initial education process, the understanding of MS begins to differientiate between both sides. The MSer is experiencing the fatigue, the numbness and so many other symptoms, but obviously the non-MSer is not. This is where the communication can start. The MSer can strap a ten-lb. weight around her husband’s ankle and tell him that’s what it feels like to walk with that leg. Or, she can have him put on a mitten and try to find things in her purse like coins or tissues if she has a very numb hand.

But the non-MSer will encounter two problems. First, how can they help a numb hand or a heavy leg? And second, many symptoms are invisible and it’s easy to forget that these symptoms exist. The MSer “looks so good”, or normal.

It is at this point that education needs to be tied to communication. The MSer needs to speak up in a nice way something like “My legs feel so stiff and heavy, I have to sit down and rest. When you have time, could you…” From the other perspective, the non-MSer can casually remark “You look like you are tired and struggling to walk. Do you want some help?” Or, “when I was reading the book you gave me, there was a suggestion to….do you want to try it?”

My husband will always help me, but I need to ask/tell him what I want or need and get beyond the feeling of “why do I always have to ask?” It is his nature to get frustrated easily and I find myself having to calm him down and direct him as to what to do. For example, if I slip and fall during a transfer from my wheelchair and yell to him for help, he will respond in a frustrated way: “What do you want me to do?—tell me what to do, tell me how to help you without hurting you.” I try to stay calm, tell him to calm down, then tell him what to do.

We MSers need to be educators, and open our mouths in a respectable way (when possible!). In addition, others around us will take their cues from us. If we are comfortable, they are comfortable. We set the tone. But many times we are cranky because we are so fatigued and don’t feel well, so our actions become mean toward our loved ones. They will have to develop a thick skin and remind themselves frequently not to take these mean attacks personally. Quite a huge task to say the least.

During an RV trip to Yellowstone one year, after a very long day of sightseeing and getting in and out of the RV I was exhausted. We came to the famous waterfalls, and my husband kept insisting that I have to get out and see them because I’ll never get the opportunity again. I kept saying I didn’t care if the sky was falling, I was too tired to move and I would look at his pictures later. He kept pushing until I finally exploded and screamed horrible things. We both felt guilty later; he felt bad that he went to see the falls alone and I didn’t go, and I felt guilty that I was so mean and should have pushed myself harder. We both eventually got over it.

A person with MS relates best with an MS peer since they are in the same shoes and understand each other best. Peers can be found online or through the MS associations. Equally important, the caregivers or loved ones also need to talk and share experiences with persons walking in their shoes i.e. their peers. Like an MSer, a non-MSer without peer support won’t survive MS well either.

I belong to a great National MS Society group on LinkedIn where both folks with and without MS have been sharing their questions/experiences. One member whose husband has MS writes a blog with him (www.relativems.com). They write some good material and take turns writing separately from their own experience and viewpoint.

They are a team.

Sometimes it’s hard for us MSers to understand why some people close to us (a mother or spouse for instance) don’t want to read something, or talk about it, or be around us. They can’t get comfortable with us having MS no matter what we do or say. Why is that?

They could be stuck in one of the “adjusting to grief’ phases like denial, anger, bargaining… For instance, sometimes a mother will feel guilty thinking that she was responsible for her son/daughter getting MS. In these situations, if each side can’t talk about their situation together, they will have to find their own way of dealing with these feelings. I had immediate family members who did not talk about MS or support me for years. It hurt. To overcome my grief I got professional counseling to help me accept the situation and focus on the non-MSers who did want to help.

A Day in the Life of an MSer

“What do you do all day?”

February 27, 2012

I don’t work.  I’m on long-term disability.  So from time to time, the question is asked of me, “What do you do all day?”

Now that’s one of those questions that can be tricky to answer, like the question, “How do you feel?”  It depends on who’s asking and what mood you are currently in.  It’s
a judgment call.

If it’s a casual acquaintance, I give them the basics: I rest intermittently, exercise or swim, walk my dog, read, get on the computer and volunteer when I can.  One of those subjects will usually switch the conversation toward another direction.  There is no sense in getting into the details of what a typical day is really like; it would probably make them uncomfortable, speechless, and sorry they asked.

Besides, everyone throughout their life has something of their own to deal with. Or, getting too specific about what I do can open up a can of worms.  For example, there are the people who want to give advice about all kinds of things, which
can get annoying if they really do not understand MS.  And then there are the “one-uppers”; they really are more interested telling a personal story that is far worse than your situation.

But once in a while over the years, someone asks me that question in a way with a certain tone that will get a rise out of me.  “So, what do you do all day?”   Even when I used a cane, then a walker, and now a wheelchair, I usually “look so good” and am smiling and perky.  I keep busy, do things and accomplish things without complaining.  It’s like they’re implying I shouldn’t be collecting checks from the government.

So what do I do all day?  Okay, it is time to get specific.  As most MSers prefer, I do things on my own as much as possible to strive to maintain my independence.

  • I’m in bed at least eight to nine hours a night but actually only get six-eight hours of broken sleep because of bathroom,muscle and insomnia problems.
  • In the morning, it takes me at least an hour to shower and dress myself.  In the winter when I have to put on socks and shoes, add another fifteen minutes.  It exhausts me and then I need to rest.
  • Every time I use the bathroom, it takes at least ten-fifteen minutes.  I self-cath, so by the time I wash my hands and everything else, do my thing, cleanup, etc. it’s
    quite time-consuming and exhausting.
  • I exercise or swim everyday to keep my musclesstretched, strong and toned.  Afterwards, I need to rest.
  • I take my dog for a walk on my scooter to get out a bit and give him exercise.  That’s another hour.
  • By now, almost 2/3 of my 24-hr day is gone.  Add in eating, reading the mail and
    newspaper, going on the computer…
  • Now, factor in doctors.  At least annually, I have to see a neurologist,
    internist, urologist, gynecologist, dermatologist, dentist, and ophthalmologist.
    In between, stuff happens that require more visits such as a urinary tract
    infection, allergies or a relapse.  More doctors, time, and fatigue. Recently, I developed a urinary tract problem and within a two-week period, I was in an office or lab getting a test on five different days.
  • After all those basics of personal care are dealt with there are other things that need to be done, like taking care of insurance forms or claims (BIG headache here!)  and paying bills.

When trying to do all this, the inevitable happens.  My stiff hands will drop a jar of olives or an open box of Cheerios on the floor.  Stress levels go up, exacerbating fatigue and all the other symptoms.  Uh-oh, the bladder is now starting to leak and clothes have to be changed.

Now it’s time for a timeout.  Then begin again on other things on my to-do-list.

We folks with MS have to deal with things like the fatigue, depression, numbness, and so many other invisible symptoms that make life complicated, exhausting and more time-consuming to accomplish things.  It doesn’t matter whether we are in a wheelchair or not. There are kids to raise, chores to do, errands to run, households to maintain, finances to manage.  Life without a chronic illness is tough  enough.  Throw in MS and the time and energy it takes to do a task double or triples. So often, many things can’t get done, get done differently, or don’t get done at all.

THAT is the life of an MSer.

Acquaintances, some friends and even some family who read my book after I published it were stunned, to say the least. Some comments:  “OMG—I had no idea…”, “what an eye-opener”, “If I would have known…”

But how do you explain all this?  Should you try?  Do they really want to know?

Again, you are the judge.

If you want to someone to know but don’t want to explain, just hand them a copy of this article.

www.DebbieMS.com
Author, MS Counselor/Volunteer