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!
On the road... of life...
Always keep moving
Sunday, November 25, 2012
Tuesday, November 20, 2012
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.
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.
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