Nobody ever really wants to think about what needs we may have in the future, but there comes a time when each of us should consider what future plans we would like to make if challenging circumstances do arise. Making plans for the future is not exclusive for persons with disabilities or for older individuals, it applies to everyone.

There are many components that go into long term care or advanced planning. Generally, these plans may include whether to purchase long term care insurance as well as evaluate various living environments and arrangements if one is not able to continue to live independently. Additionally, this process may also include some of the harder to discuss and more heavily laden issues such as creating a will (for what we would like to have happen to our belongings and assets) and also a “living will” (a plan to try establish our medical and treatment wishes if at some point we are unable to make those determinations ourselves).

These are tough things to mull over and possibly even harder to discuss with loved ones and make “official” in writing. But, the question we often forget to consider is what happens if we don’t plan for these things…who will make these challenging and difficult decisions?

The truth is that if we do not make these decisions then someone else has to make them for us.  Friends and family members may have conflicting ideas about the best course of action or decision makers may feel guilty if they are not sure if they are carrying out our wishes. The best gift you can offer to help make difficult situations a little easier is to think about a plan and then follow the process to make those wishes legal and known to all the important parties.

Yet, it is difficult to discuss these needs, but we don’t have a guidebook of life to know when the time will come when these decisions will be necessary.  In that respect it becomes important to examine these issues now when we are able to make those decisions for ourselves and maintain control over our wishes.

I don’t know about you, but I get comments sometimes when I can’t do something like, “But you did it the other day, you were fine.” I think that’s one of the many things people without MS don’t understand. Just because we can perform a certain task one day, doesn’t necessarily mean that we can do it EVERY day.

Sometimes it is really difficult to explain to others that every day with MS is unpredictable. So one day I might be able to clean house, but on another day if I clean the house I might have to “pay for it” for a day or even a week later. Everyone with MS is of course different and certain activities affect us differently.

I find it very difficult to explain to people why I do certain things knowing that I will “pay” for it later. A lot of people say, “If you know you’re going to pay for it later, why did you do it in the first place?”

This goes for both daily obligations and leisure activities, like when I’m out of the house hanging out with friends, it’s fun and refreshing. I may make a choice to stay out too late because it’s nice to get out of the house and be “normal”. But when I do that (staying out too late, for example), I do it knowing that I will pay for it with increased fatigue or other symptoms later on. It’s kind of like my MS is grounding me for staying out too late.

Even when I decide to clean my house or something similar to that, I do so know that I will deal with increased symptoms later on. By knowing this, I don’t partake in activities that I know I will “pay for” when I have events coming up (like the Holidays) because I don’t want to be stuck on the couch for these events.

I try very hard to stay active and live my life the best way I can but sometimes I find that I don’t always play by all the rules and recommendations. Sometimes I just want to stay out a little bit too late.

I’ve made a tremendous amount of changes in my life because of my MS, and I know my body better than anyone else. So, if I listen to it, I find that I typically know when I am doing “too much”. It is my choice whether to listen to what my body is saying or not and I don’t really need other people to judge my decisions.

For me, managing my life with MS, comes down to a freedom and independence thing. While we understand when others express their concern about certain decision we make… you really, “Don’t get it, till you get it.”

It’s hard to believe it’s already that time of year again… Thanksgiving is here and Christmas is right around the corner. While it’s a joy to spend time with family and friends during the holidays it can also be very stressful for everyone, especially for those with MS.

So what do you do during the holidays? How do you manage your stress level during all of it and still get the shopping and the cooking done, and even the traveling?

I thought I would share how I get through the holidays with everyone. My memory isn’t that good, so if I don’t write it down… I will forget about it. So I start off with a checklist. This way I know what I have done and what I haven’t done and what I need to buy to make things for the holidays and what people I need to buy gifts for.

First off, when it comes to traveling, I don’t have to fly anywhere but I do have to drive, or my husband drives if he isn’t working (he is a Fire Fighter and works shifts). So, to make sure that I don’t have to deal with the traffic and crazy drivers during the Holidays, I always make sure that I plan to get to my destination a day or two before the actual holiday. There is usually a lot less traffic this way, and I make sure to plan my trip where I’m not going to be on the busy roads.

Then we have to think about all of those holiday gifts we have to buy. Well, I’m not brave enough to shop on Black Friday, I’ll tell you that much. I have found it very easy and reasonable to do my holiday shopping online. I also try and plan ahead on my gift shopping, so it’s not all done at once and I don’t “break the bank”. A lot of stores have it to where you can shop online and have it shipped to the store location closest to you, if you don’t want to pay shipping and handling. Something I’ve seen a lot lately is where the stores will wrap your gifts for you. This is a lifesaver for me because I couldn’t wrap presents well before and now that I suffer from spasticity in my hands; it’s nearly impossible (and at times dangerous) to wrap presents.

Now on to the lovely cooking portion of the holidays… all of that wonderful food that makes you feel guilty you ate once the holidays are over. I don’t have holiday meals at my house, so I don’t have to worry about a bunch of people coming over, but I do have to cook things and bring them to family gatherings. The crock-pot is my best friend during the holidays, because I can throw the ingredients in to the crock-pot and don’t have to worry about it all that much. I’m a total addict to Pinterest and the easy recipes that are shared. Pinterest also has a lot of quick/easy ideas for almost everything that you can think of.

If you are one of the lucky ones that has the whole family come to your house for the holidays, that’s something that I couldn’t handle, so kudos to you. However, if I am having a party for the kids or something like that at my house I have to prepare for that, so here are some things I do…

I don’t try and clean everything in one day, because I don’t want to pay for it fort he next week. I clean my house one section at a time, and I find it’s much easier that way. Also, if you have friends and/or family near, don’t be shy to ask them for a hand. I’m sure they would love to help you prepare. If all else fails, see if you can have someone clean your house for you. I know that there are a lot of cleaning services out there that are really expensive, but if you shop around, you might be able to find a deal. You may also talk with the National MS Organizations to see if they have any resources that can help you prepare for the holidays.

I hope this help you with the holiday stress… just remember to take it easy and don’t wait until the last minute when you have to rush. Plan things out and don’t be afraid to ask for help when you need it. I’m sure your family and friends would love to help you out but they might need to hear that you need that assistance.

I hope everyone has a good Thanksgiving!

On Sunday, November 18 at Seton Hall University in South Orange, NJ, MSAA and Swim for MS Ambassador and US Olympic Swimmer Missy Franklin worked on a series of public service announcements that will soon air across the country about the Swim for MS program. Below are a few pictures from the photo shoot. Don’t forget to dive into action with the Swim for MS program! Learn more by visiting SwimforMS.org!