New Release!

Managing MS
A Roadmap to Navigate Multiple Sclerosis

It’s done! The second edition of my book Managing MS is out, and I would love for you to read it. This edition is updated and enhanced—it’s amazing how much has changed and happened in ten years.

As in the past, my mission is to continue educating anyone dealing with MS in an easy, uncomplicated way. In addition to the apparent walking difficulties associated with MS, most people aren’t aware of the numerous invisible symptoms and stigmas that are part of the disorder. “What to know, what to do”, is all in one place.

This second edition has more information, resources and links for readers to reference throughout the book. People acquainted with an MSer will learn how to help them. Read what my friend Dave Bexfield, founder of www.ActiveMSers.org has to say:

“Debbie Petrina has managed to improve her no-nonsense, been-there-done-that guide to navigating the often, choppy waters of multiple sclerosis. For personal advice without the unnecessary puffery, it’s just what the doc ordered.

If interested in a copy, here’s the link:  http://debbiems.com/orders_275.html  If you like it, please write a review on Amazon. or wherever you bought it. And then, spread the word to help others understand multiple sclerosis!

www.DebbieMS.com
Author/MS Consultant/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

Stress Management

“The $1 Million Question: What to Do?”

July 23, 2012

Stress has been analyzed for years to determine if stress affects the body. I roll my eyes at these analyses. Personal experience with MS and anyone with MS I have ever talked to knows stress has a direct impact on us in the short or long term. Or any other chronic disease for that matter.

It doesn’t take a rocket scientist for us to also know that ALL types of stress—physical, mental and emotional–has an impact on MS. While MS research hones in on triggers that bring on MS—viruses, vitamin D deficiency, genetic factors for instance—it seems that the final kicker to bring out the initial MS attack is often the result of an extremely stressful event such as:

*an accident, injury, or sickness

*a horrendous altering personal situation (for example, death, divorce, new  baby, job loss, etc.)

*long-term chronic fatigue from being overworked (such as simultaneouslyworking, raising a family, and running a household while neglecting one’s health…)

And these same long-term chronic stresses can be the precursor for more flare-ups or exacerbations as life goes on. These are serious events that require serious attention.

So let’s forget the “if” in the stress factor and focus on the “what to do about it” part, because that’s what really matters.

The goal? We want to prevent it, minimize it, and/or resolve stress. The buzz-words used today for this is stress management.

Unfortunately, stress is like anything else in today’s society. It comes in countless varieties—type, intensity, duration, onset, frequency—and there are always more than one to deal with. So for starters, one has to sort out what the stresses are and then what’s causing them. Then we can proceed with prioritizing them and finally managing them. It sounds complicated because many times it is. But going through a process to handle them lessens the overwhelming, impossible feeling they give us and helps us focus on the important ones first.

Let’s start with the first bullet above. Obviously, if we have an accident, injury or sickness, we take steps to get cured or better. During this process our symptoms are in the crazy zone from our defunct immune system, medications, fever, etc. So while we are recovering from our physical problem, we have to address the other associated stresses (pain, medication side effects, fatigue, undone domestic chores…).

It’s hard to be patient during this relapse, but it helps if you try to stay calm and focused on the fact that: when the injury/sickness is better, the symptoms will be better. The state of mind and a positive attitude is a powerful force on our well-being and healing process.

Furthermore, it’s important to takes measures to prevent these things from happening in the first place. For example, if you have a mobility problem from fatigue or balance issues, use walking aids to prevent falling and muscle strain; if someone has a cold or flu, don’t go near them…

In the other situations above, when things happen that are out of our control (death, job loss, overworked) stress can be minimized/resolved and here’s how:

    • First and foremost, take care of yourself and your health. Ensure that you eat and sleep. Self-control and mental/emotional effectiveness is enhanced while resistance to getting sick is maintained. Let’s face it, we know how we (re)act when we are tired or hungry. I freak out when I am tired and my husband is a beast when he is hungry; so I head for the bed and he heads for the frig.
    • Seek help and support from others to lessen the burden. Professional counseling, peers and support groups are invaluable for sharing, caring, problem-solving, finding connections and venting in a “safe” environment. Reach out and ask for help from friends, family, neighbors, your religious association, etc. for physical, financial, domestic issues. If you are concerned about humbling yourself or feeling ashamed, don’t be. You would do it for them; let them help you.
    • Learn to say “no” to anything that would overtax you, no matter what the circumstance. List your priorities, and review it frequently.
    • Figure out ways to change your lifestyle. Again, rely on others to help. I was a perfectionist, an independent person, and a constant doer. Therapy and unrelenting fatigue transformed me into a non-perfectionist (so what if the house didn’t get cleaned?), a more dependent person (I let others clean, cook and wash for me), and less of a doer (I made the time to rest in a quiet room at various intervals).

In contrast, short-term stress will cause a worsening of symptoms from an hour up to a day or two. The good news is however, that short-term stress can be remedied quickly and easily when identified.

This can include anything like lack of sleep, an argument, heat or allergies. Having an argument with my husband will frustrate me, causing me to drop things more and throw my legs into spasms. So I take a time-out and find ways to de-stress such as swim/exercise, take a walk around the block, read, phone a friend, read, shop on the internet, deep breathing….whatever works to calm down. Then I am better able to think and cope.

If I’m hot, I’ll cool myself down with ice water or ice packs. Showers and baths are definitely rejuvenating. When I start a new drug, I may have side effects; if the effects don’t reduce in a week or two, I might decide to stop them if the side effects are worse than the benefits I am receiving from them. If the monthly menses are causing too much havoc, it’s time to call the gynecologist. I personally was on a birth control pill for hormone management for years to help me with this problem.

In the past, I have talked to my physicians about different medications to try to help with the stresses/effects of things like depression, anxiety, or insomnia. These are very common issues with MS, and there is nothing wrong with taking something to help us cope. I have successfully used antidepressants, anxiety pills and sleeping aids intermittently over the years.

There is a lot of merit in new alternative therapies such a deep breathing, yoga, pilates, and tai chi to name a few. I have tried them all, and they provide great benefit for relaxation as well as aiding problems associated with symptoms such as weakness, balance, endurance and fatigue. These can be learned from videos, online resources, and local clubs/associations/ MS chapter programs.

There are ways these techniques can be incorporated into daily activities. For instance, deep breathing can be done while showering. Standing on one leg while doing dishes can help with balance.

Whatever it is that can help—medications, alternative therapies, therapy/self help groups etc.—it never hurts to try it out and see if it works for you. As with anything, what works for one person may not work for someone else. And I always say—“Two heads are better than one” in figuring out a problem or solution.

If there is no clear-cut problem or solution, find a peer to talk to. It’s comforting to just unload stresses, secrets and complaints to get it off your chest. There is no one better than a peer or a good, loyal friend to “dump” on. They would do it for you as you would do it for them. And, yes–“misery loves company.”

Finally, it’s okay to just go ahead and vent! Go into a room alone, close the door, and let it out. Scream, yell, cry, swear, or throw pillows. Most of the time I do very well, but then that moment arrives. I give myself a break to let go and lose control. Like a pressure cooker. I earned that right, and so have you. It doesn’t solve anything, but it sure feels good.

P.S. You can always take a stress management class. I never have, but it’s worth a try!

www.debbiems.com