Little Things

Posted on September 20, 2022 by MSAA

By Doug Ankerman

Time management? When one has multiple sclerosis?

Good one!

That’s like asking if you would rather walk on broken glass…or hot coals?

You see, I HAVE the time. I no longer work and my obligations are few, so time is no prob-lemmo. Management, on the other hand, well that’s where MS fudges things up.

Because despite all my pre-planning, organization and visual run-throughs, I am always behind. Or so it seems.

Always longest in the shower. Pokiest to get dressed. Last to the car.

Trying my darndest, MS is the speedbump I struggle stepping over.

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Goal Management Instead of Time Management

Posted on September 19, 2022 by MSAA

By Stacie Prada

Time is fixed and passes at its own pace. Goals can grow, contract, adjust and evolve.

Often advice for time management includes instructions to make lists, dedicate time for tasks, be organized, get up early, multitask, do more, and just generally be different than you’ve been. While some are good suggestions, the attempt to fit an individual’s unique experience into a fixed and uncontrollable passage of time can miss the mark. It can be overwhelming and unrealistic when not considering a person’s specific life circumstances, obligations and health. When already feeling like there isn’t enough time, the advice to do more can feel offensive.

Time management seems to inherently approach the future from a perspective of scarcity. It is true there is only so much time in the day, the week, the year, and a lifetime. Each moment passes whether we’ve spent it intentionally or not. Even so, I’d rather approach the future with a feeling of abundance. There is limited time, I have limited energy and abilities, and I also have the opportunity to fill that time in ways that fulfill my needs and goals. I can do this by being clear about my immediate and long-term needs as well as my goals in each moment and for my life.

Time management advice recognizes that it can be a project to fit everything in, but it often forgets it can be effort to fill the time. I’ve had both in my life, and at times they’ve paradoxically co-existed. There were fast-paced workdays where dedicated, productive accomplishments never seemed to put a dent in the backlog, and there were evenings with long stretches of solitude where loneliness was at the ready to dominate my head space. The daily schedule of surge and stagnation with such severe contrast was exhausting. That experience is telling for how different needs and goals dictate different choices and solutions.

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Tick Tock.. Tick Tock..

Posted on September 14, 2022 by Teena Palathanam

Time stops for no one. We often do not realize how fast the clock is ticking. But soon days turn to months and months to years and valuable time is long gone by. It is important that we use time wisely and set our priorities right. Here are some tips on how to accomplish your work and use time in the most effective way:

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Summer Travel Planning

Posted on July 12, 2021 by Angel Blair

I think it’s safe to say that this summer, so far, is shaping up to look a lot different than last years. Being in the height of the pandemic and COVID cases still on the rise at that time, the summer was just another period to get through living in a changed world. With individuals having the opportunity to be vaccinated this year, the summer months are being celebrated once again. And hopefully in a safe manner. For some this will mean getting the chance to travel again and thinking about their accessibility needs in doing so.

Traveling can be an exciting and exhilarating experience for those who enjoy it. So, making plans and preparations that will ensure the trip is a great one is an important step. For those living with a disability, having the right accessibility measures in place for travel is imperative. From the planning stages to the endpoint of the journey there are different factors to consider. The destination itself, the mode of transport, accessibility of sites and attractions, and accommodations are all elements significant to the plan. It can sound tedious and like a lot of work but making sure the trip will be safe and enjoyable is the ultimate goal.

For those making travel plans, COVID has unfortunately added another layer to the planning piece this season. Checking with destinations on their COVID policies and procedures and with the mode of transport you plan to take are additional steps now to ensure safety. If able, working with a travel agent for assistance planning your trip can help in this initial phase. For many destinations they have websites for visitors and tourists traveling to their area and offer helpful information and resources online.

If you plan to travel this summer, be sure to consider what your travel and care needs look like. Are you using a mobility device, do you need your accommodations to have specific accessibility features? Would you be traveling with medications and need documentation from your doctor? Are the sites you’re visiting accessible? What about restroom accessibility? Trails, walking paths, street and sidewalk access? Are you heat sensitive with your MS symptoms and need to think of climate? These are just some aspects to think of when making plans for your journey. It can be fun but making sure it’s also safe and accommodating for you is key.

Wishing you a safe and pleasant journey!

Travel Planning

Posted on June 6, 2018 by Angel Blair

Can you believe that it’s already June? Time is flying and we’re heading into the summer season full steam ahead. With the way the weather changes it feels like we hardly get a spring season anymore—winter tends to lead right into summer with the blink of an eye. For some folks this time of year marks a busy travel season-making plans for trips and creating itineraries of activities. For those living with disabilities, the idea of planning a trip can be taxing; making sure travel sites are accessible, packing the appropriate necessities, organizing each route to be taken—it can be exhausting before you even head out the door! But it’s important to know that there are different resources available to help you plan your trip, so hopefully you can enjoy the journey as well as the destination.

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Stress Management Tips

Posted on November 16, 2016 by Melissa Young

The holiday season is fast approaching. This time of year brings lots of great things like family traditions, fun activities, and opportunities to celebrate with friends. Unfortunately, holidays can also be stressful and unpredictable. Dealing with fatigue and managing your MS symptoms can add to your stress if you aren’t careful.

So, here are four tips to help you manage the stresses of the season so you can have happy holidays!

Plan ahead

Planning your holiday schedule of activities in advance can help to reduce anxiety and limit fatigue. Planning ahead will also help you identify the things you really want or need to do and weed out anything unnecessary or unpleasant.

Relax

It is important during the holidays to take time for YOU. Even just a few minutes to relax and recharge can reduce stress levels and help you cope with all of the chaos.

Eat healthy

We all know that holidays bring sweet and savory treats, late nights and unusual schedules. Be sure to stick to a healthy eating plan and reward yourself by having a few treats during the holidays.

Support

If you are feeling lonely or stressed, make sure you have a close friend, family member or someone you trust that you can call on. Maybe attend a local support group or call the MS Friends helpline to talk about how you are feeling. Multiple Sclerosis Friends: 1-866-673-7436

The holidays don’t have to be stressful. Take a step back and organize your schedule for the holidays, and make sure to take time for yourself. By doing so, you can enjoy time with family and friends.

Communication is a Two-way Street

Posted on February 9, 2015 by MSAA

Sometimes you may feel like you are talking at someone. As if the things you are saying hit an invisible force field and bounce back toward you with no impact on the person you are speaking to. When this happens it can cause feelings of frustration.

You may think: Are they even listening? Do they care? How do I make them hear what I am really saying (and not just what they want to hear)?

Communication can be difficult when the person you need support from is on a different page. You may feel they are unresponsive, unrealistic, or uncaring. The other person may be thinking about something totally different, they may be unmoved by your appeals, think you are incorrect in your logic, or something else entirely.

You can only do your best to communicate your needs and sometimes you may not get those needs met. Why, because communication is a two-way street. Talking at someone rarely effects change. To make a difference it often requires both sides to give a little and meet somewhere in the middle or for one person to make concessions to another.

When no one gives a little, situations can explode. For example: “I need help with the laundry, it’s getting too difficult to carry it up and down the stairs” over time can turn into “You didn’t change the laundry again. Do you even care about my fatigue and how that makes me feel?”

Or “Doctor xyz about that medicine makes me really uncomfortable.” Response: “You will take the medication prescribed, I’m the expert here.”

If both sides can collaborate and agree to a plan of action it may result in a better outcome. “Let’s make a plan for you to help me with the laundry every Monday so we can all have clean clothes for the week.” “Okay, but if I forget please just remind me when you want it done before getting upset.”

Or “If that doesn’t work then let’s talk about what other options for treatment we have available and try to select something we can both agree on.” Creating a clear plan of action can remove frustration and set realistic expectations for each party.

If ultimately, the other person refuses to listen or budge on an issue you may have to try and get your needs met in other ways. “My mom agreed to come over to help wash the clothes” or “I’m finding a new doctor.” As you can see in some circumstances seeking other support can help to resolve the issue but sometimes at a steep cost.
If you run into a situation where someone will not meet you in the middle you will need to review the pros and cons of your alternative options and remember that communication is a two-way street.

Planning for a Stress-Free Holiday

Posted on November 17, 2014 by Samantha Schech

With Thanksgiving a little over a week away, many families have already started planning for the holiday season. Who is hosting, who’s making the turkey, and who will be opening their home to holiday guests this season? As if the actual day wasn’t hectic enough, with the shuffling around of foods, the constant chatter, and all of the hugs and kisses; why stress this upcoming week in preparation?

The following tips may help keep this holiday season a little less stressful:

1. Make a plan: Start by listing out each of the tasks that need to be accomplished. Breaking them down into groups can help keep things organized (i.e. cleaning, shopping, cooking).

2. Ask for help: Be prepared to delegate tasks to others. Go through the list and identify tasks that can easily be accomplished by someone else. Family and friends are usually asking, “What can we do or what can we bring?” Use this opportunity to check something off that list.

3. Practice self-care: Take breaks throughout the day; do not push through to finish a check list. Find a good mix of tasks that you enjoy with ones that are less pleasurable; when it comes down to choosing one or the other, always choose the one that makes you happy.

In what ways do you plan for a stress-free holiday?

Inside My Bubble, Prepared for Anything

Posted on September 26, 2014 by MSAA

By: Jeri Burtchell

I like to think of myself as a planner. Now, before those of you who know me collapse into uncontrollable laughter, let me explain. I don’t plan as in “wedding planner” or even use a “day planner.” In truth, I’m a perfect candidate for one of those intervention reality shows.

I never said I plan in a structured, well thought-out manner. No, I’m motivated by more of a panic-driven, deeply troubled, “what-if” thought process I learned from my mother. I have cultivated an emergency response for every possible scenario that could come along in life. I have prepared for catastrophic events that may or may not ever happen.

Mom and I have our fire season evacuation box, our hurricane season supply stash, and when I travel I have a whole suitcase packing ritual designed to make life easier in the event that things go wrong. When connections are missed or there are bathroom emergencies, I know I can count on the contents of my purse or roller bag to rescue me.

I like to think of this as part of my MS Bubble. Since I was diagnosed in 1999 and have come to realize how unpredictable it can be, one small thing that gives me solace is having my MS Bubble.

It’s a sort of invisible force field I’ve visualized that surrounds me. Inside I have everything I might need to deal with unpredictable events. Things that define my comfort or bring me joy are always close at hand.

Others might say my bubble is nothing more than my “comfort zone,” and in the classic sense, I guess it is. When I’m working, it’s right here at my desk. In my bubble/comfort zone, I keep the necessities of life. I have everything from a box of tissues to device charging cables.

While others look at my workstation and see a chaotic mess, I see a symphony of bubble-friendly instruments, each playing a part in bringing me comfort. I choose to forgo the aesthetic appeal of minimalism. I’d rather have clutter, as long as it’s purposeful clutter. Who can say I won’t need that thermometer mere inches from my keyboard?

My sweater stays on the back of my chair, always at hand in case I get chilled. Slippers are close by.

My smartphone is the most indispensable tool in my bubble. It connects me socially, delivers my mail, reminds me to take medications, tells me what the weather is like outside, and will distract me with games if I let it.

The point is, I have made my life as comfortable as I can, given the unpredictability of MS (and of life itself!). Although my bubble does not appear to be in any semblance of order to the untrained eye, it works for me.

I haven’t “planned” my bubble this way as in planning-a la-Martha-Stewart. It is only an ever-evolving collection of habits and things that aid me in everyday life. So I am soothed by the knowledge that, even when my MS symptoms are acting up, my MS bubble is always there, ready to comfort me.

Perhaps it’s eccentric of me to imagine this “bubble,” but visualization is a coping mechanism that works for me. I once got through the claustrophobia of an unmedicated MRI by imagining I was at the beach. My “vacation” was so enjoyable I was almost sad when the MRI ended. The protective “bubble” just works for me.

If you can develop coping strategies – whether or not they involve visualizing your own bubble – whatever works to keep you calm, centered, comfortable, and in a joyful state of mind is all that matters. So think about your situation and what things bother you the most. Then go about “planning” to deal with them ahead of time.

Create your own comfort zone, your own MS Bubble.

And if you’re a friend or family member of someone coping with MS, you might want to consider memorizing these 12 things you should never say to someone with a chronic condition.

But please add one more: Never say, “I took the liberty of cleaning up your desk. Hope you don’t mind – it was a real MESS!”

Why, that would just burst my bubble!

References:
Photo credit: Jeff Kubina, used with permission under the Creative Commons License
http://www.healthline.com/health-news/ms-12-things-not-to-say-022814#1

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

The Time is Ripe…Despite Multiple Sclerosis

Posted on July 9, 2014 by MSAA

If you like to eat bananas, then you know that there are only a few days that they are in their prime. You go from the green tough phase, to one or two days of yellow perfection, and then the brown spots, bruises, and too sweet taste takes over.

If you eat avocados, then you know that when you buy them you have to feel them each day until they get just soft enough, and if you buy them soft, you must consume that day or miss your window of opportunity. In fact, sometimes it may seem like your avocado only has a few hour span where it is perfect for consumption.

So, what do bananas and avocados have to do with anything (aside from eating them, since they can be delicious and healthy snacks…just not served together)?

There are things in life you may want to do, but find you don’t have the time and/or the planning just never seems to work out. You know, like when you belong to a gym, but every time your schedule has an opening you are too fatigued to go. What about that painting class you wanted to take, but it is only held on a weeknight. which is really inconvenient? Sometimes you may be dealing with a banana situation where you only have one or two days which might work or an avocado situation where you feel you have mere hours to make something happen.

Yes, life is complicated and busy, and can be extremely overwhelming. MS often throws a wrench into all of those carefully laid plans, but if there are things that you want to do: meet up with your friends, take that class, and get to the gym. Despite MS, the time is ripe to take charge and enjoy all of those things you want to do with your life. Sometimes it may take careful planning, re-prioritizing, and positive self-talk to get you there, but it’s worth trying. There may be cancelled appointments and days when you need to take a nap instead, but don’t let those days take over for planning for every other day.

After all, you probably still buy bananas even though you know you might not get to eat each one before it turns brown, and if you aren’t already acquainted, please meet your new friend guacamole.

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