Fighting the fatigue monster

Feeling angry and generally despairing. 

Went to an event this weekend and had to return early thanks to MS exhaustion. Beginning to realize that as time goes on and the fatigue and confusion hasn't lifted, I am likely left with a bit or permanent cog fog and a lot less ability to do things...

It is frustrating and surely one of those losses I'll have to get used to over time. As with the other losses in MS, it just becomes accepting a new normal, but along with that comes the loss of dreams for the future...dreams of travel, publication, probably even a partner.

It's interesting looking down the skinny end of the telescope as my world narrows. Things close in. Friends become so important, especially true ones. Joy becomes more valued, a hearty laugh worth everything.

I've chosen wisely. I made a move to paradise, Nova Scotia. I can be outside in a wildly beautiful spot in moments. I like the people here, and I have made good friends. Health care is great, the climate is perfect, and whenever I need the sea, it's steps away. Music is everywhere, the library is fantastically accommodating, fresh apples arrive every fall...

But I'm still grieving today.

I'll have adjusted by tomorrow. Nothing that a good rest and some PBS mysteries can't solve...and a few fresh fall Macs from our last run down the valley.

Fampyra diaries: epilogue

Hey all - 

Well, Fampyra and I have parted company, at least temporarily. I was finding it contributing to my gastric reflux, it was disturbing my sleep to the point where my little FitBit was recording me in bed for 9 hours but asleep for 3. I'd think it was the machine but before I took Fampyra and after I stopped taking it, my sleep hours lengthened to 6 or more. So I must've been doing something when on it.

Tough to guess as I am in bed alone (see previous post) but thats my thought.

Plus I can't really afford the $570 monthly charge - I could, I suppose, if I really felt it was helping that much.

Of course, now that I'm off it, I am having increasing trouble walking but to be fair, I was before I went off it, too - just the progress of the disease, I think.

I have an appointment with my doc in October and will get re-evaluated then. She may think I should try it again. I may differ. 

If any of you have had sleep disturbances when on Fampyra, write it in the comments....would love to know how everyone else's experiences are. I just know I need more than 3 hours of sleep a night...

Sleep, glorious sleep....

The MS fatigue is unusual. It makes me believe that Epstein-Barr virus is a cause, because when it hits it is like having mono all over again. It is total, blinding, encapsulating. I shopped yesterday, but was totally unaware of my surroundings, like walking through fog. I ate yesterday, but tasted nothing. I spoke, but made no sense. I moved, but have no body recall. I could not see through the greyness around my eyes. It is really quite a dangerous state, as I am only halfway present, and probably prone to walking into speeding cars, putting my hand on burning elements, etc.
I am, quite frankly, not all there.
Yesterday was stellar. So murky, I felt wraithlike, except for the pain. Which accompanies the fatigue. Probably a good thing, as it makes me less likely to move, thus keeping me from speeding cars, etc., above.
The day passed. I did some things. I don't know what. And I slept, a deep sinking sleep, drowning in unconsciousness, hours passing without note. I slept all afternoon, all evening, and until 9:30 this morning.
The pain is mostly gone.
But I could sleep.....
Dang. I was doing so well. So I did my usual thing - I overcommitted and did too much. When I feel good, I forget I have limitations. It's a good thing as when I don't forget them, I feel a wee bit despairing.
There is really no predicting when the fatigue is going to hit, except that the day before it hits I get a zinging feeling through my body, a jangling of nerves that makes me feel overcaffeinated, slightly disconnected, twitchy. Resting then won't keep it away, but at least I can better prepare for it.
It's adjusting to it every time that is so heartbreaking. My mind refuses to accept that everything, everything, has changed.
On the positive side, it also has its joys. Today, I woke up pain free. There is nothing to compare with the joy of that respite.