Heat, the MS Hug, and Breathing

Yesterday sucked. After my walk I felt SO tired so I decided to take a Nuvigil because I could not stand this pattern I was falling into; Wake up for two hours and sleep all day. So I took the Nuvigil and half an hour later I… fell asleep. When talking to someone on Facebook about this medication I remembered why I stopped it, it started giving me really bad panic attacks! Right now I think it would be worth the risk to stay up because even now as I type, I just want to lay back down and I have only been up for 2 hours and 48 minutes… When I see my neurologist next Wednesday I will ask about something new for me like Ritalin because this is getting depressing… well… OK, it already is which only makes me want to sleep more!..

So I fell asleep but it wasn’t a deep sleep, I was still half awake as in, I could hear my surroundings. I could not fall deep asleep because I kept feeling like I would stop breathing, I felt like I could even hear it! Must just be a dream though right? Wrong. Something woke me up, I think an alert on my phone perhaps? So I jumped up to check it and then since I was up I wanted to stay up and that’s when I noticed that my chest felt kind of tight so my breathing was pretty labored; I felt like unless I focused on taking a deep breath I would take really small, short breaths. I could not speak a full sentence without running out of air so I would have to take a deep breath and say what I could before taking in another and same with eating; one large breath, bite, chew, repeat. It was mentally (and maybe a little bit physically) exhausting!

I finally decided to call my doctor’s office and see what I could do. Since I missed my last infusion and was briefly out in the heat the other day (on my way to the store), maybe I just needed some Acthar to hold me over til my infusion next week? Of course everyone I talked to just heard “I could not breath and I was having chest pains” when that’s not what I said, I said it felt LIKE I could not breath because my chest was so TIGHT. I told them this is nothing new and it just usually is not this bad but still, they just heard “he can’t breath”, “chest pains”, so they kept telling me to go to Urgent Care and I just kept telling them I could breath, my chest is just tight. I am not going to Urgent Care, this is normal, and there is nothing they can do for me there. He did send a message to my neurologist when I pushed the Acthar but something tells me he did not even mention the Acthar… Just the breathing and chest pains. So I will just suffer through it for a week until I can talk to my doctor who will know what I am talking about. It’s not as bad today but still there… UGH…

I pretty much just lied down all day and watched TV eventually falling back to sleep for a while. After I woke up (again) I just felt like I had to do something! I had been laying down all day and even though I could say “well my MS is making me tired from the heat” I can’t help but feel like I am wasting so much time laying around all day! So I decided to knock out a little project. something that required almost no thinking: since I got a new water filter for my fish tank the filter is raised above the tank much higher than the last so it covered the bottom of my picture frames. I wanted to move the frames all up a bit but when I took them all down I realized just how much I had ruined the wall with a million nail holes since when I first put them all up I had not started Tysabri yet and was not so good with tools. One picture was tilted so I used a push pin to keep it level! It was horrible. So I puttied up all the holes, sanded it down, textured it, and repainted that wall so it’s all nice and fresh! I’m glad I got it done but I was so tired after that!

To end it all, when I finally went to bed for the night I lied there twisting and turning for about an hour. I could not sleep! My mind was racing even though I was physically tired… I had all sorts of thoughts racing through my head, even numbers, math, all the things that keep me up thinking! After an hour of that I gave up and took a Temazepam even though I only have a few left… I couldn’t handle laying there for 4 hours wide awake… So I guess that’s another thing I have to ask my doctor about, a refill on Temazepam. I blame all this on the heat! At least I am SO FAR avoiding a relapse… Knock on wood….

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