Tag Archives: daily MS activities

Holidays Got you Stressed?

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“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

MS and Sleep

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“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