Tag Archives: Chronic illinesses

The Age of Overkill

Posted on by

Overkill: “An excess of something (such as a quantity or an action) beyond what is required or suitable for a particular purpose.”

Life was simple in the 1950’s. Throughout my long life, I’ve witnessed the evolution of product choices, variety, and quantity. Vehicles, foods, gadgets, electronics, medicine… On the one hand, it’s wonderful to have so many things to choose from. On the other hand, more isn’t necessarily better.

Overkill is stressful; it takes a lot of time and energy to figure out what/where/how to buy something and which is the best value.  The learning curve is constant with new updates and inventions to try or buy. Overkill can easily lead to over-spending, over-shopping, over-eating, over-doing, over-treating…Overkill can even kill.

Especially in the medical field. Our medicine cabinet in the 1950’s contained aspirin, Pepto-Bismol, Caladryl, bandaids, a bottle of hydrogen peroxide and a thermometer. We had annual checkups with our GP and eye doctors at their home offices; emergencies in between were handled by a single call and a same-day visit.

Today, the quantity and types of doctors, specialists, tests, medications/treatments are amazing. Obviously, having what is available in medicine is tremendous for our health and wellness needs. The downside, however, is that the excess of so many options with doctors, treatments and healthcare specialties has created complicated health management. And legal ramifications (another topic, another time.)

?????????

Who takes care of coordinating our previous/current day status of doctors and medications?  Many people assume that current-day technology does this. Others assume their PCP does this. During a visit with my PCP yesterday, my list of meds was not updated since our visit six months ago. Only one of the four specialists I had seen sent him an update of that visit. It was no surprise to either one of us. Dr. S. added that it’s a now a common problem, and it’s being exacerbated by the increasing number of specialists.

Age brings wisdom. Having lived for 67 years, (42 of them w/ MS), gave me quite an education with doctors and medicine.  My own health team grew to include many PCPs, 8+ MD Specialists, P/T & O/T to help just about every part of my body. I can’t count how many times or days I spent in hospitals for myself or other family members.

Who keeps track of my medical management? I do, because the  constant change of all variables over time can’t possibly be coordinated by anyone else. If anyone believes that their PCP, insurance, computers, etc. does this, they are mistaken.

I have always kept a journal and made sure every drug, doctor, pharmacist was up-to-date and connected with my current health status. For every new visit and prescription.  It’s my responsibility, even if a screw-up happens in our health system (that does a great job of covering their butts).

Another consideration: who do you trust as a backup for your medical management if you get in a situation that you can’t do it on your own?

In a recent blog article, I told the story of my mother.  Poor medical management almost killed her. Assisting my stepdad with her care management since January revealed many previous mishaps. During the past couple of years, she had been overmedicated and prescribed several wrong medications. Doctors (i.e., PCP, neurologist, GI specialist….) were not coordinated with her meds and updates; follow-up visits with the team of doctors did not occur. Stepdad is her health care manager; but in some cases, two heads are better than one.

It’s complicated to live nowadays. It’s complicated when sickness befalls us. It’s complicated when we grow old. It’s complicated to die. Crap happens when you least expect it, whether it’s you, your partner, your parents……..

Medicine is complicated. I don’t trust anyone but myself with my medical management. I read every word in every document before I sign it. My husband is my backup.

What about you?

 

Debbie Petrina
Author of Managing MS 
       Kindle Unlimited
Moderator, MultipleSclerosis.net 

 

Personal and Private Meetings

Posted on by

Is something hidden in your closet? Or do you need help decluttering it?

Everyone keeps things hidden in the back of their closet; I used to, but not anymore. If you were seeing a therapist/psychiatrist, would you tell? Or are you someone who thinks you don’t need one or can work things out on your own?

I am an open person with an open mind, mouth, ears. and eyes.  This is how I learn.  I’m also an open book and incredibly honest.  I’ve been this way for as long as I can remember. If you have read my new release Managing MS, you found this out because of many personal stories shared, especially about some taboo subjects.

People learn from other people. My long life of 67 years (42 w/ MS) has given me constant reason to expose some of my private self.  By doing so, I can bring awareness and help to others even if it’s in the smallest way.

This week I had my three-month appointment with my psychiatrist. Because of current laws, this is required for me in order to get a prescription for sleeping pills. Initially. I was annoyed that I had to add a regular psychiatrist appointment to my already busy schedule for the sole purpose of pills. But I’ve come to look forward to these appointments for a variety of reasons.  She’s an anonymous, unbiased person who listens to me, talks with me, and stands by if I need a lifeline.

I’m a great listener; I’ve been told many times from many people over many years from those who talked with me in confidence. But there are times when Debbie needs a Debbie. I don’t like feeling alone about some things.

In the past, I’ve had short periods of behavioral therapy to work through some major problems life threw at me. Family deaths, an MS dx, disability and job loss to name a few. I learned coping tools from these therapies, through lifelong support groups and other instruction like Dialectical Behavior Therapy (DBT). What these regular appointments do is keep me on track with my own behavior. Sort of like how a regular performance review or staff meeting keeps you on track with your job.

My life lately has been chaotic, overwhelming, and stressful.  Knowing that this appointment was coming up this week steered me to hunker down and put my honest thoughts on paper. What’s my status, and what could I do? I wasn’t handling relationships well; I was oversensitive; I was angry that too many things in daily life were so difficult to do…  The world is changing so fast, I can’t keep up, and I felt like I was in quicksand. My cluttered closet needed organized.

I felt prepared when the appointment began and shared my situation. No, I wasn’t depressed; I had high anxiety and for me, there is a difference. No, I don’t want anything for my anxiety; it’s my own fault and I can fix that.  I had taken my DBT manual off the shelf to review. Yes–“Use more Teflon–Don’t let things stick.” “Let go of toxic people and things.”  “Set boundaries and say ‘no’.”  “Don’t ‘should’ yourself or others.” “Change what you can and accept what you can’t.”

Yes—accept that I AM older and have an advanced chronic illness.  A good friend recently said I was Wonder Woman, but that has backfired on me because I had set the bar too high for my own and others’ expectations of me.  Yes—don’t cheat yourself from retirement. Yes– watch inspirational documentaries and reading novels every afternoon while lying down to declutter the busy brain.

I can’t change the world, others, or my age; however, I can change how I deal with it. Personal, private meetings have value when you are comfortable with the person facing you. Validation and sincere feedback are important especially when it is unbiased and anonymous.

Airing out my closet and organizing it from time to time lessens my internal stress and recharges my batteries.

So, how is your closet?

 

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

 

 

Is it Our Right to Die?

Posted on by

Right to Die has been a sensitive subject and debated for decades. Some older folks like me  may remember names like the Hemlock Society and Dr. Jack  Kevorkian. It’s been considered taboo and carries a stigma.

People have debated the personal choices about their body for just as long—suicide, abortion, medications, dying, etc. Living with advanced MS, and aging, forces someone to think about the right to live or die for different reasons and in different ways.

An article  about Multiple Sclerosis and the Right to Die  was just posted by MultipleSclerosis.net, an online Health-Union community. Kudos to the writer and the administration for allowing this article to be shared. The article explains Right to Die from the perspective of an MS patient, whose quality of life becomes severely diminished due to pain and other physical, mental, and emotional limitations.

Add in self-dignity and humility. I have been traumatized too many times to count from the loss of my bladder and bowels in public. Even when hospitalized, having a nurse clean up after an accident in bed is humiliating. I could write another book on this subject alone.

Many comments were quickly added to support and share the words written. I added this partial comment in response to the article to point out other thought-provoking reasons:

I agree whole-heartedly with the comments made so far. I would like to add there are additional reasons a patient may desire assisted suicide beyond their (no) quality of life. It’s personal, but I feel compelled to share this.

I am currently involved in my 90-year-old mother’s dire health situation.  She fell In January, broke some ribs, and was erroneously given a pain med that caused an horrific adverse drug reaction with another med she was taking.  It left her in a condition requiring 24-hr. in-home care for two months.  Being the only sibling living in AZ, I recently arranged to transfer her to a senior care facility for her benefit and that of my 90-yr. old stepdad.  It’s a physical, emotional, mental, and financial nightmare for us all, and her future is not in her hands.  Last week, I sat down with my husband to say I don’t ever want to put him and my son through this.  While I’m too old to advocate for right to die, I plan on writing about it on my own.

It is heartbreaking, gut-wrenching when someone you love is telling you how terrible they feel and begging for help; and the only thing you can do is hold their hand and be there with them.  Yes, there is end-of-life care nowadays, but it isn’t always the best path for everyone.

Maybe it should be phrased, “The Right to Choose to Die”.

The Hemlock Society’s motto was “Good Life-Good Death”.  For some, yes; for too many others, no.

What is your reaction or thoughts about this?

*************

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

The Power of the Brain: A Coping Mechanism

Posted on by

 

id-100327135

                  This has been what my head and life has been these past several months.

Scrambled. Out of order. Unfocused. Need of repair.

My usual ‘normal’ MS life was severely disrupted several months ago. For me, first a virus that took a long time to go away, then a badly injured right shoulder rotator cuff, then cancer surgery. Meantime, my hubby has been going through the process to determine the cause of his severe joint pain and swelling; possible RA? Don’t know yet, but only know that sometimes he’s worse off than me. I’m now a caregiver and patient. And then the problems with my aging mother, finances…

Somehow we manage to cope and find the strength to keep going.  How?

One of my favorite MS blog posts I wrote is “The Power of the Brain” https://blog.debbiems.com/?p=310 . I pull it out from time to time and read it for my own inspiration.

Since I can’t seem to find the time, energy, or the focus to write and continue my blog yet, I thought I would repeat this post. I hope it will inspire you, too.

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

What MSers Really Need from Others

Posted on by

“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 Truth about MS and Wheelchairs

Posted on by

“My Personal Insights”

If you asked anyone “What do you think of when you hear the term MS?” the answer usually includes “wheelchairs.”

When my first relapse happened back in 1980, a picture of a person with MS in a wheelchair was always shown, even by the MS Society. Perhaps it was to help with fundraising, or perhaps it was to a way to draw attention to a disease that was not usually heard of.

Whatever the case, it did create a picture of “this is MS” and the huge fear of living a life in a wheelchair. That vision still exists today, despite the advances in awareness and research that have occurred. Despite the reality that MS involves many other neurological symptoms in addition to a life in a wheelchair.

I know much about this because I am one of those MSers who ended up in a wheelchair. And I want to speak up about MS and wheelchairs to try to correct that picture and reduce that fear for anyone dealing with MS.

1. Over a lifetime, only 20-25% end up in a wheelchair. That was the statistic in 1980, and it probably is less today due to the development of the disease-modifying drugs that have been available since the mid-90’s.

I have many friends who have had MS over 30 years, and I am the one of a few who is in a wheelchair permanently. Now, of course many patients use walkers or canes since MS and mobility problems usually go hand-in-hand, but few are not hunched over paralyzed, completely debilitated in a wheelchair.

2. A person can have a quality life living in a wheelchair, though admittedly the limitations it causes can be frustrating. Again, I know.

I manage my MS well and despite having lived permanently in a wheelchair these past thirteen years, I have had a happy life. I travel, swim, volunteer, take care of many household responsibilities… And the other MSers I know who are in my position would agree their lives are full and active.

Having MS certainly is not a cakewalk, but it certainly isn’t the end of the world either. There are far worse things in life. Plus, I must add that there are other MS symptoms that can be difficult, such as vision loss and overwhelming fatigue. However, so many of these symptoms can be successfully managed to minimize their interfering effects.

3. Wheelchairs should be viewed as a friend, not the enemy. So, you ask, what the heck does THAT mean? I’ll explain.

At many MS events and online, I see and hear people with mobility issues struggling with trying to walk without a walking aid, or one that is not suitable for them. Part of it is due to vanity, or part of it is a desire to not “give in” to MS.

• Is vanity worth the risk of falling down and getting hurt? In truth, I purposely started using a wheelchair full-time even though I could walk with a walker for 15-30 steps. The years on steroids, the osteoporosis, and my age put me at great risk for breaking an arm or leg. Instead, I used the swimming pool to walk and exercise safely.

• Before I went into the chair permanently, I used a power chair on a part-time basis around the house and scooters that were available in stores for customers. It is a tremendous help in reducing fatigue and getting more things done. This was a great morale booster. In addition, the pain from overused muscles and poor posture was lessoned substantially.

I wasn’t giving into my MS at all. There are many persons with MS that will use a scooter or wheelchair because of fatigue, weakness, balance problems, or to assist with conserving energy.

4. The majority of people with MS do not become severely disabled. Three out of four people who have MS remain able to walk, though many will need an aid, such as a cane or crutches.*

Before I decided to post this article, I talked to a couple of good friends of mine to ask them about the content of this article. They, like me, are the “Ol’ MS Vets”, i.e. who have lived with MS for decades and also have been involved with the MS community for the same amount of time. We know this disease because we have lived with it and been continuously involved with its research. 

We are a reliable resource you can trust.

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

*Note: This statistic is listed in many reputable resources. The Nat’l MS Society used to use this percentage until several years ago, but changed it to 35% based on some study. I question their revision, as well as the study, because with the numerous DMDs that have been/are available, the percentage of MSers in wheelchairs permanently should have declined, not increased.

The Optimist and the Pessimist

Posted on by

“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

MS and Your Relationships

Posted on by

“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.”

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

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

 

 

Positivity: Essential For Our Health & Happiness

Posted on by

“How to Embrace It”

July 16, 2013

Having a positive perspective in life is critical to both our health and happiness.

Earlier this year I came across an article by Renie Cavallari, CEO and Chief inspirational officer of Aspire Marketing and Training, and saved it. Recently I went through a negative spell, and re-reading this article helped me re-focus and turn my attitude positive again. Since her article is so good, I decided to take direct excerpts from it to share with others:

“Nothing positive comes from negativity. How you choose to see the world is how you experience it. You feel the way you think and your thoughts reflect your actions.

As a human being, you can control how you feel. You can choose to take any situation and consider it from a positive perspective. This is not to say that when you feel bad or sad, you should deny your feelings. What you can do is decide how you will allow the people and events of your life to affect your world.

Things happen that are disappointing, upsetting or overwhelming. This is when you have to conscientiously change your perspective so you can get to a more productive mental space. You cannot change the events of your life. You can change how you experience them.

Here are a few tips:

• Ask yourself, “What is right or good about this situation?” Avoid the negative narrative and find what is helpful.

• When your energy is low, this is the first sign that you want to get some exercise. Exercise actually “turns on” our energy and has a way of giving our negative thoughts and feelings a place to release. Just take a walk, breathe in, pick up your pace and burn off the negative energy.

• Who you hang out with is who you become. Some people just give off negative energy; this is why we feel so exhausted around them. When disappointments happen, you want positive and supportive people in your world. Fire the naysayers. They are not helpful and only hold you back.

• Sometimes embracing the humor of a situation helps. Ask yourself, “What about this situation will be funny in a year? Or maybe five years?

• Move to solutions. Many times we think about what is wrong vs. what we can do next. If you stay in a place of a problem (what is wrong), you end up feeling negative and stuck.

When you start planning what you are going to do, you begin to feel empowered and in control; you start moving toward what you want. This forward momentum creates more positive energy and gets you where you want to go.

Your energy determines how you feel and experience your life. Positivity is the fuel for happiness.”

Thank you, Renie!

www.DebbieMS.com

Stuck in a Negative Spell & Attitude

Posted on by

“Grieving”

July 16, 2013

Normally I am a very optimistic person.  Throughout my life, I dealt with many major, difficult events that required life adjustments.  Going through a grieving process—denial, anger, depression, bargaining–often accompanies the life adjustments.  Somehow I always managed to plow forward through the process rather quickly, restoring a positive attitude and looking for that silver lining.

People have often remarked what an inspiration I am and how well I do. But lately, not this time.  I have been stuck in one of those negative spells, with a negative attitude.  In April, I developed complications from a UTI, got a virus, and had an allergic reaction to an antibiotic all at the same time.  The perfect storm stirred up my MS to the point that left me completely incapacitated. I was admitted into the hospital.

Fortunately, after weeks of treatment and home care therapy, the infections and sickness went away and the MS calmed down.  Physically, I returned to my previous pre-relapse “normal” state.  But having the weeks of downtime and being incapacitated shook me to the core. My mental and emotional state didn’t rebound so easily. Every day I got out of bed and went through the motions of life, but with no smiles or enthusiasm. I was  existing without any happiness. My emotions were erratic and unpredictable.  Nothing was fun or funny.

I was grieving.

I was sick of being sick of being sick and tired of being tired.  Too many times over too many years of problem solving and adjusting.  My mind shut down; it was hard to think, which is what I always seem to do.  Think.

Everything in my life has to be planned and organized around my bathroom problems, medications, accessibility needs, physical limitations, fatigue, waiting for others to help me with something… And every thing I do takes so long to do.  Sometimes it’s just not worth the effort. Everything is a production.

This coming September, I have a trip planned to Alaska.  While “normal” people are looking forward to the cruise, food and excursions, I am dreading it all.  I worry about embarrassing myself with a bathroom accident.  Or, what will I do if I get a serious UTI, since I am resistant to oral antibiotics?  I have to plan to try and prevent these things from happening.  It is exasperating.

On the other side of the coin, so often I have to cancel my laborious plans because I don’t feel well, am too fatigued, maybe didn’t sleep well, require a laxative…  I have to plan, but other times I can’t plan something because of some physical or accessible limitation. It drives me crazy.  I can’t be spontaneous about anything.

Over the years, one reason I have kept a personal journal was to vent my sadness, stress or frustration.  Here are a couple of entries made during this bad spell:

“I wish I could just have 24 hours of being a normal person with no physical problems. To sleep through the night without waking up because of a cramp, a spasm, a pain, or to have to pee.  To not wake up tired after being in bed for eight hours. To sit down and pee without the hassle of using a catheter. To have a bowel movement without worrying about if I am going to go, or if I am going to get to the commode in time.  To eat whatever I want without bloating, gas… To have a day with no pain, or edema.  To be able to walk.  To have a day when I could everything myself without waiting or depending on someone to help me. To not have to worry about changing or cancelling plans because I am too tired.  To not drop things.  To be able to jump in the car and drive someplace alone. “

“Life is a journey as people often say.  But why is it that some people just seem to cruise through life?  Sometimes I feel like I’ve been travelling on some bumpy, dirt road never knowing when an obstacle will pop up.  It always does.  A flat tire.  A dead end.  A detour.  Overheated.  A breakdown.  Out of gas.  An unmarked fork in the road—which way to go?  Stuck in a rut.”

In the past, I always reached out somewhere, like counseling, to get me through my grieving.  Grieving isn’t a bad thing; it is a coping mechanism.  But grieving too long is not good.  It will crush your mind, body and spirit.  I wasn’t reaching out this time and I was getting crushed.

Two things happened over the past month that broke me out of this spell and helped me heal my spirit. The first thing was that a lost dog appeared in front on our house late one evening, barking incessantly.  This dog was a clone of my beloved companion Bear that died exactly a year earlier, both in looks and personality.  After a month of unsuccessfully locating the owner of this lovable one-year old pup, we adopted “Grizzly”, aka “Little Bear” as we named him.

Second, I came across an article about positivity that I saved from earlier this year.  It was also a catalyst that started me thinking healthy thoughts again.  I’m posting it today on my blog after I post this article so that it may inspire others as it inspired me.

Divine intervention?  I think so.  Faith, hope and love are so powerful.  They pulled me out of the deep, dark hole I fell into and got me over my grieving.  I’m moving forward again with a positive outlook and I’m smiling again on the inside and out. 

www.DebbieMS.com