The strategy is simple- basically I stay inside as much as possible. And try not to go nuts.
I used to get out early in the morning and then again after sunset in the summer, so as to avoid the heat of the day, but a relapse of microcolitis has quite literally messed up my early mornings, which is as frustrating as it is unpleasant. The colitis probably has nothing to do with MS, although some consider it to be auto-immune; it's just something else I deal with. Just because you have MS, that doesn't mean other stuff doesn't happen too. My colitis was probably caused by all the anti-inflammatories I've had to take through the years (and STILL have to take), being in chronic pain from a spinal injury and being allergic to opiates, yada yada yada....
Anyway, I do get out briefly by about 10am every day if not before, to take sweet Henry for walkies (he walks and I scoot) to go down the hill to check the mail. I take my camera along and get pictures of wildflowers and wildlife if it's not too hot, but after about 15 minutes outside in the heat I start to weaken and melt (and Henry, being a Chow mix, doesn't really like the heat that much either), so it's back inside in front of a fan for me, and back to the couch for Henry.
|I don't know how anyone gets through life without a dog.|
Days are SO long this time of year....it really gets a bit tedious waiting for the sun to go down.....kinda makes me feel like a vampire.
|I'd like to Be Here Now, but I'm already counting down to October.|
This has nothing to do with the season or heat intolerance, but I sometimes wonder what my MS symptoms would amount to completely independent of my back problems. It's often hard to separate it out. (If you haven't read previous posts, I was already pretty well disabled before I ever got MS; I had a walker and everything, but I just hadn't applied for disability.) But I do know that in terms of symptoms and disability, my MS has really been pretty stable for about 10 years. Sometimes it's hard to tell though; my spine is a train wreck and I'm almost 65 years old....my geezerly friends and I are ALL pretty much falling apart one way or the other.
Speaking of how the MS is going, I was on a Facebook page on MS this morning, and the topic was the importance of a routine head MRI's every year for MS patients. I mentioned that I hadn't had one in several years because I couldn't justify the expense just for the sake of my curiosity, and of course that set off a flurry of concern for my well-being, which was sweet but I instantly regretted chiming in on that page. I don't usually do MS anymore, in terms of where I spend my time online; I'm pretty much all politics and social issues...but I used to spend a lot of time on MS sites in the first year or two after I was diagnosed, especially one called "This is MS, Unbiased". It's just that after awhile hopefully you find your way and it gets pretty repetitive.
You know what really bugs me about MS sites though? It's the over-the-top, grinning their asses off for no damn reason, borderline DEMENTED feel-good ads for MS meds and MS websites that make it look SO FREAKING AWESOME to have MS. Everyone looks like they feel perfect, incredibly happy, and surrounded by other smiling happy people.
Sheeesh! This is the kind of sugar-coated nonsense that could induce a sudden onset of insulin-dependent diabetes. Not one of these pictures EVER depicts an MS patient alone. Apparently we're supposed to be surrounded by deliriously happy people all the time. How exhausting. And how absurdly unrealistic. NOBODY lives like that. Seriously, those sites must be put together by the same minds that create soft drink ads or Jet-ski commercials.
I'm still on 4.5 mg of LDN at bedtime, and really nothing else specifically for my RRMS. I honestly have no way of guessing whether I'd be doing significantly better or worse without the LDN, but I assume I'm stable partly because of it. I know that if I'd been spending thousands per month on conventional therapies all these years, I would have thought my lack of progression was due to THAT treatment. You really HAVE to try to believe in what you're taking if literally thousands of dollars are being spent on it every month, whether it's your money or insurance company's money or government money; its a LOT of money and you have to do more than just hope it's working.
Hey, there's an LDN Conference coming up in Orlando in February. I don't have the means to travel and I don't know a lot about it, but maybe some of you can go. Here's what they sent me:
BONUS 2 - You will save $60 on the full ticket price
BONUS 3 - You will be able to view all conference presentations online after the event
Our mailing address is:
LDN Research Trust
Norwich, Norfolk NR10 5WY
When asked via email whether or not I'd be attending, I replied that I couldn't, unfortunately.
I was told very cheerfully that I could still watch it online...sigh......my heart always drops a bit when I hear that phrase "you can always watch it online", because out here a mere half hour from Austin, Texas, we still have no option but a satellite connection that is both VERY limited and expensive, and unfortunately we can't watch streaming stuff online if it's longer than about 3 minutes. (Yeah, for 2015 this kinda sucks. But I've got air-conditioning so honestly, no worries.)
Anyway, I briefly explained my lack of sufficient internet for streaming data and asked if they planned to make a transcript available afterward, but I never got an answer, so I guess not.
Well, that's about it. I just wanted to check in so people wouldn't imagine that my silence means I'm dead or something. Take care and good luck with the summer heat if you're in the northern hemisphere. Laters!