First the Basics: LDN 101

"LDN" (low dose naltrexone) is an "alternative" medication used with surprising success in treating immune disorders, both autoimmune and immune deficient. Taken orally at bedtime, LDN works by briefly blocking opiate receptors, thereby "tricking" the body into increasing endorphin production. Endorphins being a central part of the immune system, increasing their production has been shown to help correct immune defects.


On MS and Memory Issues [or, OMG I Forgot To Reorder My LDN!]

I try to keep up with things, I really do. I hate screwing up. Carelessness pisses me off whether it's in me or in others. I especially hate wasting other people's time and resources by messing up and forgetting something- that's the worst.  

I know, we all blow it from time-to-time. But for about 10 years now I've been busily forgetting things roughly from the time I wake up until the time I fall asleep. Which makes me feel like a total screw-up, but I try to remember to forgive myself each time I mess up, although it's hard and not always possible if I've blown it badly. But at least I resolve not to repeat the same mistake again if I can possibly help it.

Meanwhile, I make these over-the-top memos for myself- obsessively well-formatted signs and notes, usually illustrated to some extent, and sometimes I even laminate the silly things! But I still sometimes forget to look at them.
One of my silly laminated reminder signs- helps out on watering day
Posted on a sliding glass door, to remind me not to let Claude the Blue Lacy (my dog) out while thirsty wild critters are visiting
I used to rely heavily on my cell phone's alarm feature for reminders, but unfortunately the alarm stopped working reliably months ago, so that's that until next year when I'm eligible for a new phone. Which brings up another issue I've been wondering about; am I smart enough for a Smart Phone? Well, maybe. Just barely. I have to admit I dread learning how to use tricky new fact, I avoid it; way less stress. I know, it sounds lazy, but you know what they say; no pain, no pain.

See, my memory trouble usually arises when I try to hold a simple thought or plan in the back of my mind while I attempt to do (or just think about) something else

It's really just simple, two-layer multi-tasking, which was never a problem for me before MS. But trying to hold a thought in my leaky brain now while focusing even temporarily on something else hardly ever works, and I guess I've adapted to it by not attempting it if I have a choice. And luckily, most of the time I can still manage to recall in time that I'll probably never keep things straight if I try to do more than one thing at a time....

So what to do?

Well, my first line of defense when I realize my brain is getting overwhelmed is to stop everything and focus on just the most important thing, whatever that is at the time. (Usually simply updating my calendar takes care of it.) The rule here is relax and take one thing at a time. And above all, I don't let myself get stressed. Keeping things loose, light and easy has become the most normal, natural response for me. Life's tricky enough without riding your own back all the time, right?
Don't get stressed; keep it light
After all,  I'm not on a deadline-I can afford to take a break and resume whatever it was when my head clears.

The commonest multi-tasking situation that arises in my life these days that gets me overwhelmed is on

So far I've got almost 15,000 people dangling on my family tree, going back past Saint Constantine, Emperor of the Roman Empire (my 43rd great grandfather), and I've got 17 other, much less complicated  trees working as well. This genealogy stuff really interests me and is a perfect challenge; for one thing, I learn a LOT of stuff. 

But connecting one family tree to another on that site involves multi-tasking on a level that would have been a challenge even before I got MS, so I've found it best to work on this stuff a little at a time. More importantly, I've learned to let it go gracefully as soon as it gets too complicated. Just let it go. When I get stuck like that, typically I have several Windows open at once with info I'm trying to compare and consolidate.

Inevitably there's a point where there are more levels than I can even see at once, if you know what I mean, and I almost feel something shorting out in my head. Not literally, but that's when I know I've tried to go in too many directions at once and have, understandably, lost my which point I just close everything and take a break. Maybe I play a bit of Tetris or something; pretty much anything off the site. As long as I avoid anything that demands complex multi-tasking for awhile. 

In circumstances when I have to manage to juggle two things at once,  I employ what I guess you'd call a "memo-mantra", sort of a chant I literally mutter to myself unceasingly ("the water's running, the water's running, the water's running, the water's running") until I can, you know, turn off the water or whatever. 

It's like the back of my mind has this very steep, slippery shelf off of which things always tend to roll... off into a void. I have to work hard to hold that extra thought on the shelf and it doesn't always work. Usually I find it best not to attempt multi-tasking in the first place. Like I said before, one thing at a time.

Along with my inability to multi-task, I also noticed (starting almost 10 years ago) that I'd become a klutz; all I've really figured out to do about that is to move very slowly and deliberately so as to avoid wrecking things. It doesn't always work by a long shot, but it's all I got.

And OMG the most frustrating thing is that I lose things all the freaking time!  I spend a huge amount of my time looking for stuff that I swear I just freaking had!  It's maddening! 

And I'm always forgetting what I was saying, which is just more multi-tasking FAIL.

I often wish my life had TiVo, so I could push a button and go back to find out what the heck I just thought of and so quickly forgot. (Uh, what was I just saying? Crap. I know it was important...oh well...)

In fact, memory problems were the main thing that motivated me to get a head scan in the first place, the results of which led to my MS diagnosis. 

I was doing medical coding in a family doctor's office when all of a sudden I found I couldn't remember the code for hypercholesterolemia (it's 272.0), an ICD-9 code I'd used countless times every blessed working day for years, but all of a sudden I couldn't think of it. 

I felt so  freaking stupid.

I was pretty sure about the numbers involved (I thought there was a "7", a "2", and a "0", with a decimal point after 3 digits and then one of those numbers repeated after the decimal), but I had no idea about the order of the digits. 

Finally I actually had to look it up, which was on par with forgetting how to spell my own name. It was, "OK, I want a head scan and I want it now!"

Anyway, if all else fails, a sense of humor helps immeasurably as your marbles slowly roll under the fridge where you'll probably never be able to find them again....

My most recent screw-up involves my LDN. I was taking my bedtime meds night before last when I came across a little card in the slot that said "Need LDN".

Shitshitshit! I was supposed to order a refill on the 1st when I got my check, but I totally spaced it out. (Insert more cursing...)  

Obviously I should have thought to put that little "Need LDN" reminder card in a slot that I would have seen several days before I ran out, in time to get a refill, instead of on the night when I'd be out already. Oh well, another lesson learned.

Anyway, as of two nights ago, I've been off LDN because I'm out, and I won't have any to take until at least Thursday or Friday, maybe later. The compounding pharmacy I use is closed until tomorrow because today is Labor Day. They'll send it (Priority Mail) because Aurora Illinois is too far from Austin Texas for a routine road trip to pick up a refill....(duh) 

Well, hopefully my immune system won't notice the oversight. (Ha! Good luck with that, right?) 

The only other time I couldn't get my LDN for a week or so was back in '05, and I wound up with an exacerbation involving a world-class case of labyrinthitis. I literally had to hold my eyeballs still with my fingers! I was left with chronic dizziness. 

I'm hoping this week's brain fart won't lead to any permanent drama; meanwhile all I can think of to make more endorphins while I await the refill is to exercise- so I'll go to the gym later to work out....if I can remember to go...

Oh crap, I just realized that they're closed for Labor Day too! (Insert more superfluous cursing referencing feces)

Oh, and speaking of meds (well, I was, remember)....obviously it's important to remember to take them, and I have to remember to take a small handful of meds and supplements twice daily. So I've found that the simplest, surest way is to set up two weeks' worth of my meds at a time,  which I store in two clearly and heavily labeled, slotted trays; one tray for morning, the other for bedtime. 

This is not a foolproof system, but at the very least I can say that every screw-up has led to a new innovation and fewer mistakes afterward. 

For example, I found it helpful to make little cards with the days of the week on them to put into each little slot, so I can tell at a glance whether or not I've taken my meds yet; otherwise I have no idea. None.
Bedtime Med Tray
Inside the bedtime med tray
Morning med tray
Inside my morning med tray
I've shared all this silly minutiae not because I imagine it's interesting to anyone, but in case you're dealing with similar issues. At least know that  you're not alone if it's any consolation, and that there are ways to manage things if you try. Hang in there, and hey, if nothing else, work on developing that sense of humor!

Sometimes in life, whether you have MS or not, whether you have memory problems or not, it helps to think creatively and to be ready to improvise, to let go and go with the flow. I've learned that I can't afford to be too attached to things the way they are; attachment brings even more suffering to MS patients than to most people.  

Be flexible. Make plans, but make 'em in pencil.


Anonymous said...

I have MS and I most definately have the same issue with my memory. I rely heavily on the apps on my smart phone. I have a pill reminder, pay bill reminder, and even a poop log. Yep, I even forget when the last time I took a dump. I also dont leave the house without an extra set of car key on a necklace around and my neck. I am contantly locking my keys in the car. Its pitiful but I have to always come up with creative ways to compensate with my disability just like you. thanks for sharing

Anonymous said...

I started taking 3mg of LDN for about 2 months with no noticeable changes. I then increased the dosage to 4.5mg since the label the dr. wrote said take 1-3 capsules per night. Each capsule is 1.5mg. I'm not sure if this was the right thing to do. Need some feedback. Thank you. Josie

flora68 said...

Hi Josie
After starting on 3mg I've been taking 4.5 mg of LDN myself for years so I obviously have no reason to NOT recommend doing that. Good luck!