Category Archives: Just Living Life With MS

I’m in Such a Bad Mood; Heat and MS When There is No Heat

Ugh! I am in such a bad mood today! From the moment I woke up I was just… angry? You see, yes, I am sleeping way better but I still don’t wake up feeling rested (like most of us with Multiple Sclerosis don’t feel). In fact, I really can’t remember the last time I woke up and felt like I actually got the amount of sleep that I did; refreshed and recharged, ready to start my day! Pft… No… Just fatigue. Doesn’t seem to be secondary (the result of poor sleep or some other symptom) since I am actually sleeping again. So that tells me it’s primary (lassitude). Fatigue for no reason other than the fact that MS IS BS.

Re-establishing Pre-Bedtime Routine and Journaling

So, for the last few nights I have either not been sleeping at all or sleeping terribly. The other night I went to bed at about 9pm but just lied there till about 3 or 4am. Then I fell into a light sleep but around 5am I was right back up so I just lied there till about 6 or 7am. All of this despite taking 50mg of Benadryl and 30mg of Temazepam… My thoughts were just racing full speed about everything and nothing. I have not had insomnia that bad in a long time! The next night I switched from Temazepam to Clonazepam. I seemed to fall asleep a little faster but I didn’t feel like it was a “deep” sleep, I had such vivid dreams! So vivid that I woke up feeling like I had been up all night actively doing the things I dreamt about. So all day I just felt like a zombie, extra exhausted, my body wanted to sleep but my brain wanted to go-go-go. This messed with all my MS symptoms as well so I felt utterly terrible. Now, I didn’t even take Nuvigil (a central nervous system stimulant for promoting wakefulness in things like Narcolepsy) so I blame the Oral Prednisone I was on for keeping my brain “wired”. It wasn’t much, the dose was really low, I was just taking it as a taper for the Solu-Medrol infusions I had just done which ironically did not seem to affect my sleep at all but then again, I had cannabis edibles for those nights.

Still Riding the Steroid “High”

My last day of Solu-Medrol (IV steroids) was Friday and I have been pretty surprised at how it has affected me. For years steroids have stopped doing anything for me besides leaving a weird taste in my mouth. This time around I had that “wired” feeling again and I constantly felt like I was running behind schedule to get something important done despite the fact that I had finished all that I needed to do. It’s miserable because it’s impossible to “wind down” for the night. I lie down to go to sleep but still I feel like I should be doing something and so I start creating a to-do list in my head for the next day. I should also note that being “wired” on steroids just means your brain (at least mine) is constantly racing, breaking every little thought down into more thoughts, and just generally overthinking things that I would have never otherwise thought of. I still felt so physically exhausted I could barely keep my eyes open! Yet I could not fall asleep for hours even after taking Klonopin and cannabis.

Steroids; 5 Days of Solu-Medrol Done!

What a 5 days! It felt like forever! Each day, the closer to completion I got, the slower time felt. It didn’t help that a couple of the nurses had a bit of trouble placing the line… several times… resulting in multiple pokes and bubbles of burning Solu-Medrol under my skin. So much fun! I don’t plan on ever going back there again. First of all, it was ran out of a 2 bedroom house converted into a medical building. Lots of businesses do that in Redlands, CA but still, it was kind of weird at first. Then I just don’t have any desire to put my veins through that pin-the-tail-on-the-donkey-game again. Never even had that issue with medical students! But I am done. I was supposed to start a Prednisone taper today but guess what? My doctor never ordered the Prednisone despite my nagging calls! Oh well.