Reminders

Ahhhhhh, my memory has taken as bad a hit from MS, perhaps worse of a hit than my body!  I used to have a wonderful memory. I could remember nearly verbatim anything I had read and if I heard something I just needed to write it down once and I could retain it.  Now, at certain times during the day I can't even keep a thought long enough to carry on a simple conversation. It is always very frustrating and quite honestly often embarrassing as well.

Recently I decided that I would try to blog first thing in the morning because frankly it is when I am at my peak cognitively. I am well rested and my mental resources have not been taxed by anything yet. And by first thing in the morning I mean first thing! I'm still lying on bed as I write this! :) 

As I was about to start this post today on memory, in the morning (at the peak of my cognitive performance for the day, mind you), I was distracted by a muscle twitch. Not an unusual occurrence for me. Click here for post related to twitching.  So what do I do?  I promptly draft a post (see previous link)  about muscle twitch, save it, open my email and twenty minutes later remember I was supposed to be writing a post about memory this morning!!!! 

Obviously, because I am having problems with this I have had to and am continuing to develop strategies to help me cope.  Obviously, they don't always work ....... at least immediately. 

One thing I do is make lots of lists. If I think of something that I need to do, accomplish or purchase, I write it down, immediately  (for obvious reasons). I try to be consistent with this and have one particular notepad or device that I use so I'm not losing my list(s).  If I am using a hand written list I mark off anything completed immediately. If it gets too cluttered with scratch outs, I rewrite it because the clutter distracts me. 

As the day wears on and I become more fatigued both physically and mentally I have more difficulty even remembering to check a hand written list.  The afternoons are when I am thankful for technology. I am learning to use the reminder function on my smartphone more and more. It sends me a little jingle at a programmed time to remind me to check it. If I get something done with a single tap I can remove that task and the next one is moved into its place. If I don't get something taken care of on that day, it is automatically moved to the next day for me. 

Taking advantage of the technology available has been a life and sanity saver for me.....now if I can just keep up with my phone!

You can do it!

One of the positives for me that has come from being diagnosed (yes I said positives!) is that I am more willing to take chances or leaps of faith. I'm not talking about my spiritual life here but my everyday, the: Can I do this?; I'm not sure of the outcome or my ability, riddled with self doubt life. You know the one......where you pass up career opportunities or personal opportunities that seem too good to be true and you over analyze or self doubt yourself right out of it.

For someone who is now plagued with the additional questions of: Am I going to get too tired?  Are my legs going to work the whole time?  Will I be able to make a decision or retrieve the correct words? the fact that I am more willing to step outside "my box" is quite amazing to me.

My daughter invited me on a trip over the summer.   It was a spur of the moment trip.  That is something pretty unusual for both of us.  We are both planners.  I wonder where she gets it from?  We both, although I am sure I am more inclined to do it, usually have everything mapped out well in advance.  We do spontaneous things, but we plan for them.  :)

I wanted to talk myself out of it.   There are always excuses, right.

• How can I justify the expense?
• I'll be too tired to be any fun.  
• I can't leave the other kids because school is about to start.  I have supplies and clothes to shop for.  
• What will they eat?  

Yeah right!  They are teenagers, they will hunt down food like wild animals.  Besides I had already decided earlier in the summer I was not going to miss out on things anymore because I thought I might be too tired which is really what most of my anxiety stems from when you boil it down; that I will be too tired to physically or mentally to complete, well, just about everything.  I decided that I was not going to BE the obstacle, I was going to overcome my obstacles.

So off we set to the airport.

First obstacle:  Pre-filled Copaxone syringes on a plane.  I packed them in my carry-on because I didn't want them to somehow get lost in "luggage land" without me.  I can't run down to the drug store and pick up a few extra.  They come from a specialty pharmacy, are shipped overnight via
refrigerated carrier; and they cost a bazillion dollars which insurance would not cover to replace.  I was anticipating trouble but was pleasantly surprised.  As I waited with my shoes off to head into the scanner, I leaned over to the lady screening the bags, got her attention and gently tapped my suitcase and quietly said "I have medication in syringes in my bag."  She smiled and asked if there was any type of gel pack with them.  I replied that there was indeed a refrigerated pack to keep them cool (I hadn't even thought about that being an issue).  She shook her head and motioned me on through.  After I went through, she smiled and said, "Thank you for letting me know."  That was it, no problems whatsoever.  We put our shoes on, grabbed our bags and headed to the plane.

One obstacle that wasn't an obstacle down.



So within one week of mentioning it to me, my daughter and I both boarded a plane from Dallas to Los Angeles.  We did have hotel reservations but that was it.  We had no plan for what we were going to do while there and we had no reservation for a rental car or ride.  She had mentioned that she had done some research and we should use public transportation while we were there.  I laughed at her, literally.  I know people use public transportation but we don't generally.  We live in rural Texas.  Other than Greyhound there is no real public transportation.  She and I both have used buses and trains in Europe, but that was pre MS.  Pre having to be more prepared (in my mind anyway) for obstacles. 

We made it safely to our destination and bought ourselves a Metro Tap Card for $20.00 each and we rode the Metro Rail and buses all over Los Angeles!    Not only did I overcome self imposed obstacles but she overcame her fear of needles by very carefully (and after much encouragement and coaxing) administering my shot on two nights while we were on our trip.  It was a time for us to enjoy each other and both experience and see things we had never before.  What an awesome adventure with my daughter that I would have missed if I had worried about everything and talked myself out of going because of what "could" have happened.

 

 

Yep, I am finally doing it! The 30 Day Squat Challenge

Okay, I have finally given in!  I am doing the 30 Day Squat Challenge.  You know the one that made its way around social media last spring......Hey! Better late than never!  When this started going around Facebook last spring, I had numerous Facebook contacts who were participating and offering each other encouragement and accountability.  I wanted to try it then but was pretty sure that I could not keep up with the progressive nature of it at that time.  Sticking to one of my New Year's Resolutions however, I did do something.  I quietly and without any fan-fair began doing a few squats every day.  I think I actually started with five.  Over the summer I worked my way up to 25 every morning.  Now I can do those 25 without even blinking an eye so I decided it was time to start the actual challenge.   Exercise is so important to people with Multiple Sclerosis and aside from the physical limitations that may prevent us from performing certain exercises we also suffer from just plain lack of motivation!  Even though the "rush" of doing this challenge seems to have passed in my social media circles, hopefully there are a few of you out there that can keep me accountable and help me stick with it.  I am proud of myself for consistently working up to the point where I feel like I can even attempt it!  Anyone want to do it with me?

More Intriguing Information about Vitamin D

As you probably know by now, I am a big proponent of Vitamin D these days!  (If you don't know why Click here!)  I was just reading an article shared by Multiple Sclerosis Information on Facebook that just further enforces my beliefs!

The article is Researcher: Vitamin D Better Than Drugs in Treating MS.

The title sounds a pretty boastful based on the initial findings of the research presented in the article but regardless I firmly believe there is a strong correlation between MS and Vitamin D deficiency.   Based on how I feel when I am regularly on my Vitamin D regimen personally, I can confidently say there is a huge difference in my fatigue level.  While the Vitamin D does not eliminate fatigue for me I have had better results with it than a variety of alternative prescription solutions.  I personally take my Vitamin D in conjunction with Copaxone to help treat and manage my MS.

What are your thoughts on Vitamin D?

 

New Year's Resolution - Exercise More!

One of my New Year's Resolutions is to EXERCISE MORE!

This really should not be a difficult one for me to accomplish because pretty much if I exercise at all I will be doing more than I have been recently!

I have never been one that really enjoys "organized exercise".  I prefer to play a sport where I get exercise but am having fun, but also reaping the health benefits and I don't realize it!  :)

Now, while I am at a Soccer field for what seems like just about every waking moment, I get little to no health benefit from being a spectator.   To accomplish my goal I must actually move!

I was recently at a dinner where the topic was the benefit of exercise to a patient with MS.  With limitations on what we can do physically, sometimes it is a challenge to come up with an exercise routine that is both feasible and fun.

Initially after my diagnosis, once I was able to walk better, I enrolled in a Zumba class.  It sounded ambitious to me at the time but my daughter encouraged me and went with me while she was home on a school break.  I was not able to do all of the moves (especially at first).  However, as time went on, it helped me tremendously in regaining not only my strength, but balance and stamina as well.

As summer wore on, it became consistently too hot at the gym where the Zumba class was held and the risks outweighed the benefits, so I switched to water aerobics.  I loved it and was able to maintain a more consistent body temperature while exercising.  Water aerobics lasted through September (I think) and then with the rush of school starting and getting back into that routine any semblance of an exercise schedule for myself got left by the wayside!

My goal is to find several activities that I can do several times a week so that I neither get bored, nor physically strained.

My list for now consists of the following:

• Walking in the neighborhood (weather permitting).
• Zumba (at home on DVD, with my own thermostat!)
• Water aerobics when it resumes for the year.

What are you doing?

New Year's Resolution - Time Management

I have been doing pretty well with my time management goal lately.

However, I have realized I only have a certain amount of control over my own time. I can MANAGE all I want, but I am only able to carry out so much, regardless of what I have allotted for any particular time.  Even if I have allowed for rest, breaks, unforeseen circumstances, sometimes I am just not able to make it all work out the way I (originally) thought it should.

So really what my my resolution should be on this topic is to not be so hard on myself about not being able to do it all.

I recently skipped TWO soccer games.  One game each, of my son and one of my daughter.  Skipping a game is not something I do.  I make an effort to be at all of their events.  I am not able to always do this but I manage to get most of them.  These particular games were the same night in two different towns in opposite directions from each other.  On paper, I could have made it to the first half of my son's game and the last half of my daughter's game.  We had been to several games (preseason scrimmage) already that week.  The weather had been terrible - cold, windy and wet at all the previous games.  I was tired.  I should have been tired anyway and then the MS tired hit and hit hard.  I couldn't do a thing about it but stop!   That MS tired did not care a thing about what was written in my calendar.   I felt guilty and I felt sad that I was missing out on their games.

Funny thing is that the kids were fine.  They know I am their biggest fan, on and off the field.  When my son got home (he drives), he was surprised I hadn't been there.  He said, "I was pretty sure I saw you in the stands!"   We all had our usual post game talks about who did what, and how they felt about it, and what they needed to work on.  No one made me feel badly about me not being there but me!


So I am releasing the guilt!  I am going to keep trying and when I can't go anymore, well.... I will go to plan B, or C, or even better, no plan and just roll with it!  Everyone have a great day and just keep, keeping on!

Cool As A Cucumber!

Yes, yes! I have ordered and received two shirts that are made with a relatively new material that activates a cooling sensation when moistened. I am super excited to try them!

In the meantime however I have discovered a wonderful little "evaporation towel" called Chilly Pad by Frogg Toggs. It is pretty terrific and as a matter of fact I am using one right this minute!

Today we are attending a soccer event. I didn't wear one of my new cooling shirts because this one is at an indoor facility. As an afterthought though, I did grab my new Chilly Pad as we walked out the door this morning. I am so glad that I did!

As the day has worn on and the hot Texas sun has beat down on this place it has warmed up inside. I have my Chilly Pad draped across the back of my chair and it is perfect for keeping me cool while watching the kids work on their skills!

I discovered my exciting new find based on a tip from a new acquaintance I met at a recent MS program hosted by Shared Solutions. She had one and passed it around for all to feel. She uses hers draped across the back of her wheelchair to help her keep cool.

I found mine at Wal-Mart in the hunting section.  I couldn't find it on my own but when I asked the young lady working in the department, she took me right to them. 

They are also available online on a number of sites or

 you can get one by clicking here -->   

I definitely recommend them!

Hot Days and Cooling.....Vests, Tops, Tanks?! What's A Girl To Do?

The dog days of summer are upon us.  I have always been a summertime girl.  I like the outdoors, water sports and sunshine; and in the past, yes, even the heat.  Now, not so much and August heat in Texas, even in my better days, could prove rough.  

Heat intolerance plagues many of us with Multiple Sclerosis.  I was not really sure that I was susceptible to this particular symptom until pretty recently.  Last year’s excessive heat and drought in our area kept me, and everyone else with a choice, in the nice comfy air conditioning (and possibly in denial) more than I realized. 

This year when I have ventured out I have noticed the symptoms set in that I have never recognized before.  Symptoms that I had however experienced with hot tubs (yes, I have avoided those for years – I like the bubbles but leave OFF the heat please!). 

• I become physically drained or “heavy”.

• I become dizzy

• My vision becomes “narrowed”.

• I feel just overall yucky! 

Thankfully these symptoms abate after I am able to cool off and return to a normal temperature!

So my goal now is to figure out how to deal with the heat without having to become a hermit and hide inside during what formerly was my favorite time of the year.  One thing I have heard of was wearing a cooling vest to keep your core body temperature down while outside.  Last night I Googled “cooling vest” and received a long list of results featuring a myriad of colors in the latest in what I am have begun calling “road crew construction fashion”! 

Now, I am not really a slave to fashion but I am hunting for something a little more feminine that I can walk around downtown on The Square and peruse the windows in the antique stores without feeling like I am going to fall out.  After what seems like hours of searching online I have found the following few options that I am going to give a try.    

This one for sure
and one of these too only in women's, of course.......
and while I'm at it maybe a dress or two......   :)

They have special material that produces a cooling effect when moistened (aka you sweat in them).   They don’t promise the same results as the cooling vests but they do seem like a viable option for most of what I am looking for. 

I will let you know how they work and if you have any suggestions or have already tried some of them please let me know! 

You mean not every health issue I have is related to MS?

When I start to feel "not right", I automatically assume that I am experiencing a relapse or an exacerbation of existing symptoms.  But guess what?  Sometimes I have the flu or a cold or low blood sugar, or high blood pressure.  Or better yet, (and the one I like the least) is I am just aging!?  

The truth is that people with MS have just as much likelihood of catching the same bugs that everyone else does.  They also have the same odds of having coronary artery disease, diabetes, cancer, etc. as the general population.  

So what does that mean?  It means that MS is not responsible for everything that goes wrong with your health!  Here is what you need to do: 

• If you have a new symptom, no matter what it may be, let your doctor know.  
• Maintain a good relationship with not only your neurologist, but also your General Practitioner.  Visit them when you are well so they have a baseline for your overall health.  
• Get yearly health screenings just like you should, including physicals and blood work.  
• If you are a woman don't forget (or avoid) your annual well woman exam.  

Keeping a handle on your overall general health will be beneficial in your maintenance of your Multiple Sclerosis as well.

"Am I going to die?" well yes, but probably not today....

Being newly diagnosed with Multiple Sclerosis is scary business.  

I remember the day I got the diagnosis.  It was heart breaking.  I thought my life was over.  Now that I have been on this ride for more than a year I realize that it is not over, I have been given a new life.  In the midst of all of the uncertainty with MS, I realized that I do have control over some things and that is what I can do to keep myself as healthy as possible. 

One of the first things I hear when I talk to people who are newly diagnosed is “I’m not ready to die!”  Well, the good news is, most likely that really does not need to be an immediate concern.  The fact is while we are more likely to suffer from disability in some form or another; our average life span is quite in line with the national average.  MOST people diagnosed do not die from MS but other causes, just like everyone else.  With the treatment options that have become available in the last two decades life expectancy for MS patients has steadily increased over the last 50 years and the progression of disability is able to be slowed in many cases with consistent treatment and modification of lifestyle. 

Well what does that mean - Modification of lifestyle?  It means pretty much what every doctor tells everyone.  It means you should eat more healthily, get as much exercise as you can tolerate and avoid stress.  Oh and you should take your medication regularly, not just when you feel bad or cannot function properly.  MS is described as disease with symptoms that come and go so just because you cannot see or feel an attack does not mean the disease is not progressing.  It is possible to have progression without outwardly visible signs. 

So, if you are “not ready to die!”  Listen to your doctor!   Take control of what you can in this crazy ride.  

• ·         Make healthy menu choices; avoid high fat, high sugar foods.  

• ·         Exercise – Keep your body in the best physical shape possible.  The blood flow is good for the brain and memory retention and the physical benefits are paramount when you have a relapse.

• ·        Avoid stress – I know this one can be the most difficult.  Most people don’t look for stress, it finds them.  You have to learn to walk away, say no, stop and smell the roses and enjoy the moments you have.  All of that sounds so easy (and like a bunch of cliches thrown together) but it is essential for your health.  Take it slow, eliminate one stressful thing from your life, adjust and then do another.  It will pay off in the long run!

• ·         Take your medications regularly – If you have vision problems, do you stop wearing your glasses/contacts because you can see well when you have them on?  No!  They are working so you keep wearing them!   So why would you stop taking your medicine if you feel better and fewer lesions/plaques are forming!?  It is doing its job!  Let it work!

So yes, it is a scary, crazy ride but you have  the ability to take control of some things along the way to make it a better than expected trip!

a, b, c, D……my new favorite letter! Are you struggling with MS Fatigue?

D3 to be exact!

I have for years been suffering from sometimes debilitating fatigue.  Over the course of my life it has been chalked up to a variety of causes:

• Busy lifestyle.
• Anemia.
• Depression.
• Low blood pressure.

It has always been frustrating to me because there never seemed to be a consistent rhyme or reason for my fatigue.

It is true I led/lead a busy lifestyle.  I have several children, have always been employed and/or attending school and am involved in or with various clubs and organizations.

Blood work has rarely, if ever shown me to actually be anemic, when it has actually coincided with my bouts of fatigue it has always been referred to as "borderline".

I have never felt like depression was causing my fatigue because I have not experience the other symptoms often related to depression.

My blood pressure is pretty consistent and has always been on the low side.   It does not fluctuate with my fatigue level.

 Possibly, occasionally, some of these factors contributed to a certain level of fatigue in my case.  However, I feel like the fatigue that would send me to the doctor every few years was what is now known to me as MS Fatigue.

The fatigue that I formerly experienced on occasion now has become a daily burden that I must stay diligent to keep at bay.

Since being diagnosed I have learned several ways to help cope with MS Fatigue.  First and foremost is for me to take care of myself.  I have had to learn to not be afraid to say no to or postpone obligations in order to allow myself to maintain an adequate amount of rest.

Exercise also helps keep up my energy level.  However, I do have to be careful not to get too hot because getting my "core temperature" elevated increases my fatigue.

I also have started taking my Vitamin D3 religiously!  I have noticed a measurable increase in my fatigue level when I forget to maintain a regular daily dose of D3 in my diet.

What coping strategies have worked for your MS fatigue?