I still can’t believe it’s almost 2013! I hope everyone is having a wonderful (relaxing) time during the Holidays. I know that I’ve been extremely busy, but I make it a point to relax when I need to. During the Holidays, even though it can be stressful, I really do enjoy myself. For me, I spend my time enjoying the company of my family and friends and focus less on things I “should” be doing.

After the Holiday festivities are over, I don’t rush to my “to-do list”… Even if I haven’t done a lot of physical activities during the Holidays, it can still be a stressful, but wonderful, time. I have found that just relaxing completely and having ME time has helped a lot when it is time to get back in to the swing of things.

I read a lot post-Holidays. This helps me to feel less stressed.

Clear your brain, enjoy all of the presents you received, go grab a Holiday Starbucks Coffee and enjoy what you have in your life, no matter the circumstances! Yeah, I know we have MS & there isn’t anything we can do about it. Sometimes I get aggravated and angry and depressed, when my MS interferes with things I want or need to do but I won’t let it control me 24/7/365!

Talk to you next year!

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!

So, let’s face it… cognitive issues/memory issues play a big part in living with MS. Then the fatigue that we deal with along with all of the other symptoms, play a big part in our daily lives.

With all that we have to live with, how are we supposed to “remember” things… like paying bills, appointments (and what we are going to need for the appointment), symptoms, medications, medication refills, the list is endless.

I, for one, have had a very hard time when it comes to remembering things that I’m supposed to… and having two little kids adds on to the list of remembering things. You know that “fog” you feel when it comes to anything you have to “think” about… it’s a struggle, right? Sometimes in my “fog” state, I have accidentally put the milk into the pantry, instead of the fridge… and I know I’m not the only one.

Since my diagnosis in late 2010, I’ve found little tricks along the way to help me remember things, though things do still slip, at least it’s not everything…

So, for any kind of bills, appointments, or anything I have a “deadline” for, I set up an alarm and not just one. I set up multiple alarms on my phone, computer and in some cases, it might help to have a family member or friend remind you, or even set an alarm on their phone. With bills, if I can, I set them up on “auto-pay”, this way I won’t have to worry about not having electricity because of my memory issues.

For remembering medications, I have a document I saved on my computer and I keep a printed copy in my wallet. I also have it written down in my “notes” application on my phone. There is also a lot of “apps” out there to help remind you to take your meds, or you can set an alarm on your phone. The MSAA even has a free app if you have an iDevice called “My MS Manager”, it’s a very helpful resource I use that has a lot of tools, check it out when you have time.

Please note: My MS Manager will be available on Android in the upcoming weeks. Please check back for the official announcement.

For my medication refills, I set them up on the “auto-refill” with my pharmacy, so that I don’t have to worry about making a refill in time and I’m e-mailed when my prescription is ready for pick-up.

With my symptoms, well I deal with a lot of the same symptoms everyday, but I do take note of any changes in my symptoms. I try to put this on paper and in my phone. I’ve also found it “better” to have multiple places throughout the house for me to write down things on, so that I can put it all together before my next neuro visit. I have found that a dry-erase board is something you can’t misplace when you have it stuck on your wall in a “general” area of your house.

All of these things have helped me a lot when it comes to remembering everyday things and making sure that I can update my neuro on how I’m doing with my MS. I have a certain journal that I got, it’s labeled My Story, and that’s basically where I keep all of my MS information and I have it near me at all times, either in my purse (it’s a small booklet) or in my car, or in the kitchen. I have also set up a “reminder” on my phone to not let me forget my journal when going to an appointment.

MS is already a difficult illness to live with, so I’ve tried to find ways to make it just a little bit easier with day-to-day tasks.

As we all know, MS doesn’t have an “age limit”… It’s not very often you come across the younger generation that have disabling illnesses, so a lot of onlookers give you that “what the heck is wrong with her…” look.

I was 22 when I was diagnosed in August 2010 and I live in Central Texas. My life has completely changed since I was diagnosed. I know a lot of people who are my age and have MS or a lot of people with MS in general, worry about dating, marriage, kids, etc.

Well, I have two kids that are three and six and I’ve been married for almost seven years, so that’s not something I really had to think about for my future with MS but I can tell you this, being a young married couple with kids is hard enough and when you add MS into the mix, it is not an “easy life”.

I now have to worry about… what’s the temperature going to be like outside, are my kids contagious when they get sick, how am I going to clean the house or keep up with the laundry, the list goes on and on…

After I was diagnosed, my good “friends” were no longer… it was very hard for me to handle with everything I had going on in my life. Now I have come to realize, that they were never the friends I thought they were to begin with.

I had received my Associates Degree in Criminal Justice two-weeks before I was diagnosed with MS, I even had a job interview set with the county jail to be a correctional officer, but I was diagnosed the day before the interview when I was hit with a huge flare… I couldn’t take the written test because I couldn’t see straight.

I tried to go back to school for my Bachelors but during the first semester my GPA went from being Honors Level to barely meeting the minimum GPA requirements for the University. I decided that I needed a break from the stress and I didn’t want to ruin my GPA completely.

I have a handicapped-parking placard in my car and I don’t “like” to use it unless I really need to. When I have used my parking placard I see everyone staring and whispering (it reminds me of being back in high school)… I’ve even had people tell me, “You’re a disgrace for abusing your grandparent’s parking pass…”

I’ve finally gotten to the point where I’m not AS irritated with the ignorance of onlookers. I don’t get as upset or angry and I don’t lash back out at them anymore.

As for having a relationship and being young with MS… it’s a struggle but I’m glad that I have the support from my husband. Yes it’s stressful, but what relationship is perfect? I’ve told many other young people with MS that if the person you’re in a relationship with can’t stay in a relationship because of the strain of MS, then you may need to accept that and move forward and that goes for the friends issue as well.

I went from being a very active person, always outside… loving to do yard work and going to the lake, to being home a lot. I still TRY to do these things when I can, but lets face it, in the Texas heat… I’m a couch potato. I am now more focused on my life and well being than the drama of having fake friends and doing what “healthy” people my age do. I know that my choices on how I live my life now will reflect on what happens in my future and that’s the big picture. I don’t expect anyone my age without MS to understand that, and that’s okay.

MS has taught me many things… But most importantly it has taught me… If you live your life with negativity then that’s all that you will have surrounding you. But by embracing life for what it is, and making the most of everyday… You know you are doing everything you can, not only for yourself but also for those surrounding you to make this life the best it CAN be.

I’m not happy I was diagnosed with MS, who is… but I can say that I’m happier now with my life than I was before.

From my experience, I’ve known families to be supportive, not supportive enough, or way TOO supportive. It’s something that a lot of us living with MS have to deal with… and how do we address this issue?

I find it… difficult at times, to handle my family, well some of them. The other part of my family… is quietly supportive (which I enjoy… once I found out that they were still supportive in a “back burner” kind of way).

So how are we supposed to let our families know what amount of support we need from them. If they are too supportive, it’s hard to tell them to “chill out” without upsetting them, because they are doing it out of love and general concern for us.

Since I have a rather large family, I’ve dealt with a lot of different “types” of family support. When I was first diagnosed, I was scared and depressed and in the middle of a really bad flare up, I didn’t want to talk to anyone yet my phone was ringing off the hook. I wasn’t trying to be rude by not answering; I just didn’t have anything to say.

I’ve found that the word “I’m sorry” is said to me a lot, since I’ve been diagnosed and I tend to get irritated at times, by hearing it constantly. I understand that NO ONE wants to see a loved one get diagnosed with MS, but life happens… we can’t do anything to control it.

I’ve finally found my ‘balance’ when dealing with my family and their support. Some people in my family show they care and give me the support I need, in just the right amounts. It’s enough to let me know that they love me and care about me, but since it’s been two years since I was diagnosed… the check-ins aren’t as frequent… which it’s kind of a relief. I had told my mom that I love the fact that my family cares so much, but at times, it was too much… I think the “word” got around and that helped my support system become what it is today.

In other parts of my family, it seems as if they don’t really acknowledge my MS, unless it’s obvious (physical signs of my MS). I know I’m not as close to them as others in my family, but it’s always nice to know that they care. I don’t want to ALWAYS talk about my MS to them, but I did drop a hint, that it’s nice to hear from them every now and then.

Then there are some that just flat out ignore my MS… which is irritating in a lot of ways, because I can’t ignore my MS…. not even if I tried to. MS is a life changing diagnosis.

I’ve found helpful tools online and at MS Conferences, to help “show” my family what MS is like, in some ways. It’s so hard to tell them how we’re feeling… and we can never explain it to them or show it to them, where they will completely grasp the feeling, but we can get close…

All in all, I’ve let my WHOLE family know, that I love the support they give to me… even if it isn’t constantly checking in on me… I finally found the ‘dose’ of support that I need when dealing with my MS, and it’s finally working itself out with everyone.

Here is a helpful tip to remember; if someone asks you what MS is, give them information in spurts. This way they can really take in what you’re saying, when you are explaining it. I’ve learned that if I overload their brain with information, they forget some of the important details…

A saying comes to mind, that I’ve used with my family and close friends, “I don’t want your pity… but I NEED your support.”