Christmas Letters with Multiple Sclerosis Fatigue

Have you ever tried to write about your year while struggling with MS Fatigue?  I do every year, and I need help doing it.

It is not just writing that gets me.  I can do that in stages, and I tend to have at least one person check my work when I write some letters.  (You may also notice that I tend to write much more often in the evening or at night which, for my fatigue, is the best time of the day!)

It is the cognitive aspect.  My cognitive abilities have been severely dampened by my fatigue.  It interests me that it has been only in the last decade or so that cognitive problems have been linked to MS.  I had a cognitive evaluation done last year and it showed I am still an intelligent human being, but with deficits they now link to Multiple Sclerosis.  It is probably why I don't submit posts as often as I would like.  Too many things in my life to remember:  You know, get up, eat, take pills, drink fluids, pay bills, Christmas is coming... (and I really do have to remind myself or be reminded to eat, drink fluids, take pills, pay bills...!)

Anyway, back to this Christmas letter thing.  First, I started months ago to address the Christmas cards.  Really.  And I update the addresses every year on my Excel document, of which I have several copies on several devices, and I date each copy in the name so I know which copy is the latest in the copies I find.  Of course, sometimes I even delete old copies, but other times I am so worried that I will lose something important that I end up keeping them.

Next is the letter thing.  I was taking notes throughout the year, but I don't know where the notes are, so that didn't work.  Instead, this year I asked my housemate, caretaker, landlord, friend... to make a list of all the things that happened this year, and I wrote from her notes and my somewhat Swiss cheese memory.  It turned out to be a pretty good letter!  And I had only two pages so I only had to use one piece of paper (front and back)!  

Well, my back has been very painful today, so I will quit.  More later!

Headaches and the Holidays

The holidays are fast approaching, and like flood season, they are upon us too quickly and without any seeming warning.  Those of us with cognition problems may start to get "ready" in August, but we don't remember what we have done or where we might have put it!

Fatigue is the base issue for me, and I must admit that it is hard to let go of the holiday rush to rest up for the holiday cheer.  This year will be pretty slim overall.  I have not the energy, nor the finances to create the illusions of the holidays, so I will have to rely on naps, and on my own heart to bring the true spirit of the holidays to any festive activity I attend.

I mentioned headaches in my title.  I am fighting a whopper right now, as I write (hoping my typing is ok, since my eyes are half mast or totally closed)!  I believe these headaches come on as I attempt to do more with less energy, and my stress level goes up as I cannot achieve as much this year as even a year ago.  All the things I want in life are becoming harder to grasp as I reach into my little bag of tricks for magic beans that make me well enough to give all I want to give.  

Today, I am supposed to call about getting "Medigap" coverage for the things Medicare does not cover, that I still cannot afford.  I also have to call my new drug plan to see why they are telling my pharmacy they do not cover a medication I asked about before buying the policy!  Then, of course, I have not worked on my book, nor my business, nor any Christmas gifts for a while.  And I always have to remind myself to eat at least once a day (before dinner, which is a required course since everyone in the household eats at the same time), do a little walking, and take my nap.  

I have a recipe book that needs finishing so we can order copies to sell as a fundraiser.  A cover to work on, recipes to input (thank you, Mom for doing a lot of that!), proofreading and editing, and on and on.

Yesterday, my brother and two friends came out in a virtual rainstorm and went up onto my roof to fix a leak.  It is fixed, and all is well.

Our creek almost broke its banks yesterday as well, and would have flooded the road if not for a couple of new construction projects that happened the past two summers.  We may have been flooded in, which in some ways is better to me than having the power go out because with the power out, if it is out long enough, it gets cold.  Flooded in just means the roads are closed.  Our house is up far enough that we would have to have a MASSIVE storm to flood the house.

So there you go.  The holidays in a nutshell for me.  Thanksgiving at my brother's house this year, then back home.  Christmas at my parents' house, then to the other half of the family for a couple of nights.  Find out if the neighbors can watch our cats, and give medication to one of them.  Feeding them would be good, too.  I hope the neighbors are going to be home!  If not, we will have to implement Plan B, as soon as we figure out what to do for Plan B!  

Lots of stuff going on here during my headache as the holidays march closer.  I send good, happy, healthful, and especially peaceful hopes and wishes for all of you out there.

Passion

There is another show on tv that I have been enjoying.  It is Eric McCormick's new show, Perception.  I named this post Passion because we all need to find our passion in life, and the episode I just watched, from about a month ago, had a young man in it who was in college on a football scholarship.  When Eric McCormick's character (who is a college professor but also a schizophrenic - not multiple personality - with some very interesting hallucinations)... anyway, he figures out this kid in his class, who is in college on a football scholarship, has a head injury that keeps him from playing football anymore.  The kid goes back and plays in the next game and injures himself even more severely.  Dr. Pierce (McCormick) asks the kid, "Why would you do this to yourself??"  The kid says that ever since he was small, football has been his life.  Who is he if he can't play football anymore?

Now, I have to back up here.  One of Pierce's hallucinations this episode is a younger version of himself.  This younger version reminds Pierce of the plans and the dreams he had before being diagnosed with schizophrenia.  

Okay, so back to the kid, and the question he poses to Dr. Pierce.  Pierce does not let on to anyone he has schizophrenia because it is so misunderstood, and because he has a helper who keeps him kind of focused and on track so he doesn't lose himself in his hallucinations.  So what does he say to this kid?

He tells the kid that he had dreams and plans, and ended up in a hospital, too.  He thought his life was absolutely over.  The kid asked, "What did you do?"  The answer?  FIND NEW DREAMS.

Find your new passion, or reinvent an old one.  You might have noticed that the last post and this one both deal with new shows with a psychological twist.  My passion when I was going through elementary, junior high, senior high, and college was psychology.  I loved the theories and the whole world of different ideas about people... our motivations, our cycles of growth, our thought patterns... so much more.  I think watching these two shows, I may actually be rediscovering an old passion that I can grab hold to in order to make some order out of this world of mine which, for several years now, but especially since I have been on full disability, has been just a jumbled mass of lists and ideas and piles of barely started projects.  

I want to write a book on MS, and on knowing your own MS.  Psychology may just be the door I have been looking for...

Politics and why I have been away... this time...

Politics.  I really hate them, so until now, I have avoided commenting on the entire election.  I have been seeing arguments for and against each side of the races... local, state, federal.  It amazes me how badly people treat one another in the name of politics.  I see and hear what I thought were perfectly sane people talking like the apocalypse is coming if so and so gets elected... and it doesn't matter what side they are on, because both sides are saying the same thing.  All I know is that life will go on, just as it has before.  The way we as a nation treat other nations, the way other nations treat us, the way we treat each other as individuals... it all comes in waves and circles.  I don't know where this election will leave us as a nation.  I just wish for once we could go back to the days before we began locking our doors, distrusting our neighbors, and hating people we once called friends, all in the name of politics.

I was watching Matthew Perry's new show, Go On, the other night, and there is a character on there who is married and lives not only with his wife, but also with her boyfriend.  When asked how he can be so happy all the time, he explains how he has made up an old town called Harborville.  It has 700 people, and he knows all of them by name.  He goes to Harborville (in his mind) whenever he needs to escape the realities of his life.  There he is happy.  There everyone treats each other with respect.  I think we all need a little Harborville in our lives... and a lot less nonsense.

Help with our cookbook!!

By the way, my walk MS team, team Motivation is making a cookbook this year. Last year we did a cookbook called Just Desserts. It was full of over 50 dessert recipes. This year we are doing Simply Salads and Super Soups. What we need, is a bunch of soup and salad recipes!

I have set it up so you can go online and simply input recipes for us. We are looking for at least 100 recipes! If you do nothing else with this blog, please click on this link and add a recipe of your own! It can be really simple or very complex, whichever you like...

http://www.typensave.com/get-started/

The login is:  team motivation

The password is:  grape730

Your Opinion Does Count!

 No this isn't a political ad.  It is a new commentary, this time on knowing your own MS.  I have discovered, in my experience and by reading about other experiences, that those of us with MS have as varied lives as anyone else. Our personal MS is not exactly like any other persons MS. Sometimes you might go to the doctor, and the doctor will tell you what is and is not MS related. You might feel to shy or too overwhelmed to contradict the so-called experts. Now I've got to admit that when I went to my very first neurologist, everyone told me he was the best MS neurologist I could get. He also had a lousy bedside manner, and rarely recognized my needs, even when I tried to tell him about my needs. I finally left that neurologist and got a new neurologist. This one actually listens to me, and takes my account of my experiences to heart.

I guess what I'm saying here is that it is very important to have a neurologist you could talk to. I also have a good primary physician and a great chiropractor, all of whom helped me get my SSDI.  All of them are very involved in my medical life, I guess I could say. This reminds me, I told one of them I would write her a little note to tell her how I'm doing because she was too busy the day I saw her! At any rate, I want everyone to know that your opinion counts. The doctors will not continue to learn about MS if we do not teach them about our experiences.

I know there are people out there who choose not to reveal their diagnosis. That is a very personal choice, especially in the workplace. I myself have always been open about my diagnosis. As a matter of fact I was working in a family owned business when I had my optic neuritis and was ultimately diagnosed with multiple sclerosis. Taking the time off of work to get different tests done, I felt it natural to tell them, my employers, what was going on. They are good people and he had become a bit like family to me, so I was very fortunate to be where I was.

At any rate what I really want to express is that the more we talk about our MS, whether it is only to our doctors or to everyone we possibly can just to raise awareness, our opinions and our experiences count.

Just remember,

You count!

Just an Update...

Just an update from the previous post.  Ok, so this is what have been able to accomplish today.  I have one load of laundry clean, but not put away.  The other load is waiting fort me to it into the dryer.  I did go shopping and spent over $90 for a few meals worth of food.  Too bad I don't eat those fillers of bread, pasta, potatoes, etc.  They are cheaper!

Right now I am watching the Seahawks struggling against the Packers.  That is right, I am a football fan, although to be a fan of Seattle sports, it does mean I am looking for a win.  It is hard to watch a game when the officating is so bad, but it is Seattle sports, and well, whatever.

At any rate, I was able to get some good watering done, to do my shopping, am still working on the laundry, all of the dishes are done except the plate sitting in front of me.  I don't remember what else I had on my plate, so I guess that is all that counts.  I am tired, yet will stay up for a while, if for no other reason than I am a night owl and just don't like to give up and go to bed.  Go Seahawks... and good night all... for now.

Thank you for reading.

PS.  That was so a catch by Greg Jennings, nor Golden Tate, but Go Seahawks amd Golden Tate! Wow.  Although I do like the win, I can say that the replacement referees need to go. Wow.  It looked like the Superbowl with the Seahawks.  The bad calls just went against Green Bay. I am sorry > Green Bay.  On the other hand, the Seahawks did see the worst officials in the Superbowl while they were there... still,