An MS Journey

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“A Picture of Health on the Outside”

I was only 25 in 1980 when my MS symptoms started. My career was taking off, I was newly married, and my husband and I were active outdoors doing things like skiing and dirt bike riding. Life was good. But like all newly-diagnosed people with MS, the fear of having the rest of my life ahead of me with a chronic, debilitating, progressive disease with no cure was frightening to say the least.

What kind of life could I expect?

Flash forward to present day, 35 years later. Life has been good despite the challenges of living with MS while also dealing with other challenges in life that “normal” people endure. Adjustments to changes in my life seemed constant, as my MS Blogger Buddy Nicole Lemelle would say, would become “My New Normal.” And I’m currently facing two more…

Truthfully, I hate MS—it’s interfering, unpredictable, and invisible in so many ways. I didn’t have a choice about getting it, but I did have a choice about whether I was going to let it control me or manage my life. It took time, but I learned to manage my MS well. It helped that I am a positive person with an “I can do this” attitude.

Difficult decisions had to be made—giving up my career, having only one child, going on disability, having to move out of my house… It was hard. But amazingly for me, in the end each difficult decision resulted in a good outcome.

I can honestly say that I have, and will continue to have a fulfilling  life with my husband of thirty-seven years and my 32-year old son. Not only have I been an avid swimmer, crafter, and reader for as long as I can remember, my love of history and nature was satisfied after visiting all fifty States, seven countries in Europe, Canada, Mexico and the Caribbean. Many of these trips I made in a wheelchair.

As I journeyed through motherhood, I enjoyed being a soccer mom, wrestling mom, homeroom mother, and a volunteer in my son’s school, church and community. In-between, I learned Spanish and tutored high-schoolers for fifteen years. And I was involved as a volunteer and in other roles in the MS community for the past thirty years. I’m proud to say I authored a book, Managing MS: Straight-Talk…  published in January 2012, and since then learned social media and built a website through which I have interacted within the MS community since.

I have always practiced health and wellness as a critical component of managing my MS and chose my medications carefully. Good sleep, regular fitness, healthy diet choices, stress management… Recently at my annual physical, my doctor said to me “I have good news and I have bad news.”

The good news? Out of all her patients that day, I was the healthiest– perfect scores on all my tests: blood pressure, weight, cholesterol, pulse, circulation, Vitamin D, calcium, and all the other things that are measured when blood is checked.

The bad news? I have severe osteoporosis in my hips and osteopenia in my spine—the worse she has ever seen. I had most of the risk factors for it: genetics, years of steroids, being thin, post-menopausal, and little weight-bearing fitness due to being in a wheelchair for fifteen years. The first of two new adjustments that I have to research and work on. This is serious stuff.

When you look at that picture of me, it is a definite portrayal of that old expression that makes all of us with MS cringe: “But you look so good!” You can’t see the osteoporosis, just like you can’t see so many of my MS symptoms. Though I use a scooter or wheelchair because I can’t walk anymore, many folks have asked me if I had an accident. They can’t see the pain, the numbness, weakness, the bladder/bowel problems, or the fatigue and emotional issues that I live with daily.

And now that the new ridiculous TV commercial about Tecfidera is airing, people are getting the misconception that there is a pill—a cure—that Relapsing/Remitting MSers can take that will give them the ability to be active and normal all day long. What a hurtful setback for me and all of the other MS patients that have been trying so hard to get people to understand what MS really is all about.

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                                                     Shame on you, Biogen.

I don’t know. At first I thought that no awareness was better than misleading awareness, but maybe this commercial will stir up the pot and get people talking more about MS.

 

Throughout my entire life, I have always been a doer and a helper with some purpose to serve. Even in the toughest spells throughout my life due to MS or something else, I forged forward to reach out. However, I’ve reached the point where I’m so tired and I hurt almost all the time now. I have been wrestling with this question for a while, “Is it time to quit?” That means the second, big adjustment into unknown territory—true retirement.

 

Actually, I won’t let go of everything completely; I will share and care about MS on a limited basis through my social media sites. But I’ll let the MS blogging be carried on by great, credible others that I got the privilege of knowing from social media and attendance to a MS Blogger Summit sponsored by EMD-Serono/Pfizer:

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MS Bloggers and some Significant-Other Caretakers

   (Sitting, L to R)
Laura Kolaczkowski
Lisa Emrich
Nicole Lemelle,
Lisa Dasis
Yvonne Desousa
Debbie Petrina
(Standing, L to R)
Jon Chandonnet
David Lyons
Stuart Schlossman
Dave Bexfield

There are other great MS bloggers around too, such as those on Multiple Sclerosis.net, that can be trusted to obtain quality MS info, inspiration and education.

Living with MS for 35 years and being involved with the MS community in so many ways teaches a person a lot of things. This is the last page of my practical MS guide book Managing MS: Straight Talk From a 31-Year Survivor that I published in January 2012:

Final Words of Inspiration

September 28, 2011

Life is precious, challenging, and worth getting out of it what you can.
Being a lover of American history, one of the items on my bucket list was to visit the actual trail of the Lewis & Clark expedition. I just returned from an RV road trip with my husband and brother to do this. During the trip, I reflected on the similarities of their journey and life with MS.

When Lewis & Clark began their journey to the Pacific Ocean across the continent, they went into unknown territory. Daily they encountered obstacles in the wilderness they had to overcome, and had to rely heavily on the support of each other/ strangers, their skills, ingenuity, and creativity in order to survive and prevail. The team of thirty-three persons suffered; one died. They experimented. They documented. They learned. They managed and accomplished incredible hardships. There were moments of the deep despair and defeat, and moments of high joy and success.

They found their way. I found my way. You will find your way.

                                                                                       Debbie

www.DebbieMS.com 
Author, MS Counselor/Consultant

 

*Image courtesy of “rakratchada torsap” portfolio at Free DigitalPhotos.net

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 Truth about MS and Wheelchairs

“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.

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

Growing Old with Multiple Sclerosis

“A Double Whammy”
June 5, 2014

It has been awhile since I posted my last blog article. The pace of my postings has slowed over the months. And the pace of everything I do has slowed.

Staring out into my yard one day, the realization really struck me: I’m getting old! Next birthday I’ll be sixty, with over half my life living with MS. It is taking me longer to do things. Napping and resting more each day is necessary. There are many things I cannot do alone anymore and I need to wait for someone to help me. All these things eat up the minutes of my day.

Two things happen when you grow older with MS.

1. Normal people start experiencing many things that a person with MS may have been experiencing already: leaky bladders, less balance and coordination, weakness, fatigue, less strength and endurance, cognitive issues. Aging compounds MS symptoms. Wow—a double whammy. I personally noticed increased fatigue and weakness when I became post menopausal 1 ½ years ago.

2. With MS, it is always tricky trying to figure out what is causing what; is the MS acting up on its own, or is it re-acting to something else. There is substantial interplay between physical, emotional, and mental health. When you grow older, it becomes trickier, since age and hormonal changes (e.g. menopause) affects many things that MS affects. For example, are cognitive problems a new symptom of MS, or is it due to aging?

With regard to #2, I decided, at this point, why care about figuring what is causing what? The focus now should be what can I do to help these things as opposed to asking why is this happening. Like doing mental exercises and adjusting my exercise programs to maintain strength, endurance, etc.

Point number #1 has been a difficult adjustment for me. This year has been quite busy with numerous things. In addition to my regular household responsibilities, I became involved in helping four immediate family members with serious (separate) problems, had out-of-town guests, and did extra MS-related counseling and events—all in addition to trying to maintain my own MS-related issues (doctors, tests, new adaptive equipment, etc.).

My life has always been this way. Busy, helping out, achieving, overcoming obstacles… People depending on me more often than I ever depended on them. And that was okay because that is the type of person I am.

But–

Lately, everything changed. My brain went fuzzy. Motivation to go anywhere or do anything stopped. I didn’t exercise, and lost strength. All I wanted to do was sit or sleep.

My MS symptoms worsened. I was mentally, emotionally, and physically drained from things going on in my life. I’m tired, feel hurt and deflated. Like someone pulled the plug out of me. I didn’t make a conscientious decision to shut things down; my body forced it on me.

Some folks have an easier time “letting things go”, or have financial resources to help get things done around the house. Others, like me, don’t.

The MS in my life has made me grow older faster. Not on the outside—everyone still tells me “how good I look” and not nearly my age. But I feel like I am eighty and my body certainly functions like it. Actually, my body has been functioning like an eighty-year old for at least the last twenty years. So, I guess maybe I’m maybe pushing the century mark?

That’s the downside of getting old with MS. Like an old car, things are wearing out, breaking down and going slower. Lots of dents and bruises. Worn out from all the miles travelled at an age younger than the average normal, healthy person.

But there’s definitely an upside. All those miles travelled with MS and age brings with it a lot of wisdom, strength and experience. As I sat in my yard reflecting on my life, I started making a list of what the upsides of MS are/were for me, and I am sure others as well:

• I’m a survivor and a success. I focused on what I was able to do, not what I couldn’t do. As a mother, teacher, and educated businesswoman I learned to manage my life with MS while sharing and supporting others: my entire family, friends, children, teens, persons living with all types of illnesses/disabilities and the elderly. I did this voluntarily through my daily life—listening, sharing, talking, speaking, writing, letters, phone calls, cards, social media, holding hands and giving hugs. All for free.

The upside? Priceless payback in knowledge, personal growth and problem solving acquired from all the interactions. I have found that so many people who acquired MS are of this same nature. Positive achievers. The irony of getting MS altered my personal life actually for the better in terms of my life’s goals and direction.

• I never took things for granted and always appreciated so many people and things in my life. A sunrise, an outing with a friend, the hand controls in my car, my freedom from living in the U.S… Being wealthy or keeping up with the Joneses didn’t matter. I was satisfied with what I had. MS, or any chronic illness can make you be this way. You don’t lose sight of what really matters in life.

• You can’t recover an opportunity after it is missed or time after it has passed. Whenever possible, I strived to enjoy as many things as I could. One never knows what the future holds or how fragile life can be. Having MS or another major health issue will do that to you.

Life can turn on a dime, as the saying goes. My awesome sixteen-year old nephew was in an accident and was brain dead for twelve days before he passed. My dad died of a heart attack in 1972 at age 45 when I was seventeen. An acquaintance of mine fell out of a tree and became a quadriplegic in his forties. I lost one of my best friends of cancer at the age of forty-nine. My husband and I were caretakers for his bedbound and blind grandmother for fifteen years. The list goes on…

• Living with MS taught me how to take care of body and protect it. Eating, sleeping and exercising properly. Using walking aids. Maintaining good health and avoiding drugs, smoking, and taking huge risks. I paid attention to my body. When I was 32, I took quick action for a weird-looking mole on my back, only to find out that I had malignant melanoma and would have died six months later otherwise.

My internist jokes that I am healthier than most people he sees all day! I got results back today on thorough blood work, and everything was normal. (Too bad my sensory and motor functions are a MeSs!)

• I have the virtues of patience, empathy, compassion. I became a whiz with commonsense, logic and communications. I fight for what is right and what I am entitled to.

• I am an expert in managing MS. Though MS took control of my life at times, I knew how to get back in control.

I recently called an old friend of mine whose husband died unexpectedly last month. She has had MS over thirty years, is seventy years old and her hubby was her loving caretaker. Being a fellow old veteran MS buddy of mine for 25 years, I wanted to check in on her now that all of the memorial activities have ceased and the reality of her new situation has begun.

We talked about her present position and future plans, about MS, and so many other things. There are quite a few things I would like to share about our conversation that I believe is worthy for someone with or without MS at any age to think about.

• It’s essential to have a solid network of friends and family. You just never know if your caretaker will pass or leave you. “J” is ambulatory, but she does have her limitations in other ways because of MS. J has no children. Though dependent on her husband whom she had a loving relationship with, she maintained her independence as much as possible. One of my favorite expressions is “Use your mouth and your intelligence”, and J does that. Her wonderful circle of support helped her with the memorial and the aftermath of things to do. Going forward, her “circle’ will help out with her car and her house.

• It’s important to have a plan in place in the event your caretaker/significant other leave before you do. Where would you live? Who could take care of what? Plans should involve short and long-term healthcare, short and long-term finances, wills, living wills, medical powers of attorney, memorial desires in writing.

• Do you know where to find important information, or how to do things your significant other does? For example, my husband knows all about the “outside” of the house (e.g. circuit breakers, timers, sprinklers, all of info about our RV…) and I don’t. I know all about the household finances, taxes, investments, insurance, where all the important documents are kept and he doesn’t. We need to find the time to educate each other.

• It is never too early to know how to take care of yourself and depend on yourself financially. When my dad died, there were three of us kids and my mother was a homemaker. I learned early to work, get a college education and into a high-paying career field, save and invest. Good thing. I got MS in my twenties. One never thinks it will happen to him/her.

• Age is wisdom. J and I talked about how well we know what is best for us and how we have the confidence to trust our intuition and judgment in making decisions. We also know when to reach out to a person we can trust to discuss something with. After all, two heads can be better than one.

For instance, J mentioned that her neurologist is pushing her to switch her DMD from Avonex (requiring a weekly injection but working well for her) to a newer oral treatment. Her answer? “NO! I know my body, and I don’t want any new drug with new, unknown side effects and more MRI monitoring.” She asked me what I thought about her decision.

• Finally, WE are in charge of our own bodies. At a recent visit to a new internist, I declined a bone density test, Pap smear, mammogram, colonoscopy, and two vaccinations. After explaining why, she accepted what I had to say, and said she will always work with me.

Getting older is a welcome if you have your health. The truth is, living with MS is very hard. As I get older, it is getting harder and more complicated. I get tears in my eyes when I see commercials of happy senior citizens in active adult communities.

I’m in the so-called Golden Years and retirement. It’s time to let more things go and make the most of it. This doer part of my personality needs to be turned down lower to control my self-induced stress. I just booked a cruise to Hawaii, while I have the opportunity and the time.

Now I am going to fix myself a margarita and watch the hummingbirds on my patio. And not think.

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

Holidays Got you Stressed?

“Letting Go”

December 20, 2013

After all these years, I still get to the point of total meltdown when in the midst of the holiday season. I know I’m older, I know I have MS, I know people don’t expect me to wait on them or see a perfect house… Yet I still occasionally get that desire way to do things myself–perfectly with ease and energy. It used to be my personality.

Even though I also know those days are long gone, the old personality resurfaces. I still freak out every December as I tearfully stumble through trying to decorate and send cards. When it gets to the point like a balloon getting ready to burst, I have learned what to do for myself.

I had heart-to-heart talks with two friends on Monday, who are sixty-ish and feel like their to-do lists are never completed because of their lack of energy. I talked with my good-humored neighbor, who is legally blind and “gets” what it is like to constantly have to rely on others for help. And then I cried and cried. It all made me feel better. I had to let go and move on.

Between Christmas and over New Years, I will have relatives coming to stay with us for a week. I remembered this article I wrote last summer and re-read it. Good advice; I’m back in the swing of things.

I am re-posting it because I think anyone with MS or a chronic illness would benefit from reading it whether it is for the first time or not. It doesn’t matter what time of the year it is either, though right now is a perfect time to put these things into action.

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

Stuck in a Negative Spell & Attitude

“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

Fatigue & MS

“What it is—What to do”

“People look at me and just cannot understand why I get so tired.” (MSer comment, March 2011) This is a quotation I used in a chapter about fatigue in my book, Managing MS: Straight Talk….”

During a brief conversation with my sister last night, she remarked that she had no energy, she couldn’t think clearly, and all she wanted to do was lie down because she felt so exhausted. She has a virus. I got it—I knew exactly how she felt.

I often describe MS fatigue to people that it is like having a cold or virus—that you feel so exhausted all you want to do is lie down. Out of all the symptoms I and others have experienced with MS over all these years, I truly believe this is the one symptom that is the most difficult one for everyone involved to understand and know what to do about it.

But fatigue is extremely difficult for a non-MSer to understand because you can’t always see it—there is no stuffed up nose, swollen eyes, or sneezing. Or, someone may say “you look tired, maybe you should take a nap.” Okay, a nap may help, but fatigue isn’t only due to being sleepy.

It doesn’t matter if the MS 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 almost always present with MS, 24/7. Why? Fatigue exists because it is caused by MS–a disease, a chronic illness–and it causes other symptoms such is walking problems to intensify.

Fatigue is the hallmark symptom of MS. It is a universal complaint by 80–90% of MS patients. And it is finally being recognized as a serious obstacle for employment by the Social Security Administration when applying for disability benefits.

• A MSer will get fatigued easily, whether other symptoms are present or not. Simple activities like making dinner or talking on the phone too long can be exhausting. The slightest thing can make it worse, such as not eating, drinking enough fluids, or being overheated.

• Fatigue is compounding and escalates quickly if MS becomes active due to a relapse, or the amount of disability has increased over time. For example, sleep disturbances due to bladder problems at night, or extra effort required to walk because of spasticity or other gait problems, will impact fatigue significantly. Energy is reduced, weakness increases. This causes stress, frustration, and depression that will then lead to even greater fatigue.

• Fatigue is often caused by medications taken for other MS symptoms.

Often we can combat fatigue by pacing our activities, taking frequent rests, or letting others do things for us. Yesterday I came across an article entitled What You Can Do About Fatigue From MS, and is worth a read. It is from a blog I subscribe to called Stu’s Views & M.S. News; the source of this article was WebMD. Here’s the link http://bit.ly/Wrk8M9 .

There ARE many ways we can help to manage fatigue, and even if some do not work, other things may. At least we can try and keep on hoping.

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

MS and Sleep

“A Top Priority”

If someone asked me what is the #1 thing a person with MS should do, I would say make sure you sleep. If you do nothing else for yourself every day, you should at least make sure you get 7-9 hours of good sleep.

 
What is good sleep? Being able to fall asleep and stay asleep. Easier said than done for a person with MS, whose sleep becomes dysfunctional due to bladder problems, pain, spasticity, worries about life problems, and the actual effect on the brain by MS itself.

 
Why is sleep so important?

Sleep affects EVERYTHING in the body—your heart, energy level, pain, weight, and even skin. Your brain cannot function well without it. It affects your mental state: judgment, reaction times, moods, memory, concentration and decision making. Sleep enables your brain to process information and store it in your memory; it rejuvenates parts of your brain that was used during the day and even parts that are not normally used.

 
Sleeps keeps your immune system healthy and your resistance up to prevent colds, viruses and illnesses. Sleep problems can lead to accidents, as balance and coordination issues that many people with MS suffer with become worse. Sleep deprivation makes it harder to deal with stress, solve problems, or recover from sickness or injury.

 
Good sleep relaxes the body, helping to reduce pain from sore and tense muscles.
And poor sleep or lack of sleep can impact your life at home and at work, as well as your relationships. Energy levels—already plagued because of the fatigue factor—are exponentially reduced for a person living with MS.

 
It’s common sense. But what’s not apparent to many people is that sleep also gives your vision a rest. Vision is a cognitive activity! Poor sleep means your neurotransmitters, which normally suppress pain, don’t have time to refresh. Not getting enough sleep can impact the arteries, increasing the risk for heart disease/stroke and causing skin to become stretched and shallow.

 
Less sleep affects the appetite since it causes one to snack more, increasing the risk for weight gain. Becoming overweight makes physical activity more difficult and lessens endurance, which means fewer calories burned. In addition, inadequate sleep releases less serotonin in your brain that can cause the body to crave sugary foods.

 
There are several things you can do to improve the quality of your sleep. (Note: This list was from an article in Make the Connection, U.S. Department of Veteran Affairs.)

• Keep your bedroom quiet, dark, and cool
• Make your bedroom a place just for sleeping and not a place for other    activities like watching television, reading, working on the computer, or listening to the radio
• Create a relaxing bedtime routine
• Stick to a sleep schedule, making sure you wake up close to the same time every day
• Get outside and exercise daily (but not close to bedtime)
• Take medications that might delay or disrupt your sleep earlier in the day
• Avoid caffeine and nicotine
• Avoid alcohol before bed or drinking excessive amounts of alcohol
• Avoid large meals and beverages late at night

For MSers whose sleep is bothered by their symptoms, I offer these suggestions:

• Manage your symptoms that impact your sleep by minimizing them as much as possible. For example, I suffer from spasticity, and I make sure I stretch my muscles every day. This reduces the tightness, jerks, pain that spasticity causes. I have much back pain, and deep breathing and a shot or two of scotch will put me to sleep right away. I refrain from liquids two hours before bedtime to get my bladder as empty as possible. I take my antidepressant at night, since a side effect it causes for me is drowsiness. If I wake up in the middle of the night worrying about something, I read a magazine article to get my mind on something else.

• Consider a prescription for sleeping pills. Personally, I have had a ‘script for them for thirty years. My personal rule of thumb is that if I have two nights of poor sleep in a row, I take a pill on the third night. I make myself sleep, because I believe that not getting good sleep is far more harmful for me than a sleeping pill.

So, bottom line, make sleep a priority. A requirement. You’ll feel better, think better and function better.
www.DebbieMS.com