Oh the little joys (annoyances) of MS

Once again my sleep is interrupted and I am awake at an ungodly hour. Yesterday I was awake from 2:30 - 4:45. Today I was awakened at three a.m. and I found I had peed the bed a little. Yippee! Isn't that what every 38-year old woman does?

I know my multiple sclerosis is fairly benign compared to other people's MS. However, it's been ramping up silently and slowly lately and it's starting to really annoy me. For example, the sleep thing is getting ridiculous. I take enough meds at night to knock out a horse. Two of those meds are Requip and Baclofen which should take the edge off my muscle twitches but not so much lately.

Most nights, or should I say mornings, I'm aroused (NOT in that way) because my legs are a-popping. My calf and lower leg muscles are bouncing around and bouncing against each other. I can only ignore so much and then I get out of bed. Once I am upright the popping or muscle fasciculations (fancy word for twitches) usually stop. I am so desperate to sleep through the night that I usually put a hot corn bag (like a heating pad) under both legs each night before I go to sleep. That is what I used to do this past summer and it worked much better than it is now.

So here I am b!tching about minor things when I know it can be much worse. I need to call the neuro's office again today to check on things. The last time I was there we talked about my lack of sleep, which, if you know me has never been a real problem before. I need to talk about my increase in leg fasciculations because it's not even close to summer yet when things really ramp up to a high level.

Anyone have any ideas or suggestions for the sleep and/or muscle twitches? I don't think it's a case of missing any potassium or something like that. I know the neuro wanted to try melatonin for sleep but I am wary of that because a friend sent me a link saying that it may not be the best for people with MS and that it can affect depression which I also deal with on a daily basis. That means I need to ask the neuro about that specifically.

Sigh, I know it could be worse but it's not usually like this in April when it's not even hot yet. I'm done b!thcing for now. Wish me good night, please!

Still sleepy but I'm a twitching and a message not from our sponsor

I received this message the other day in my comments section and I'm placing it here because I know some of you readers are also MS bloggers. I haven't done any searching to see what mediciglobal is and if this is even legit. Maybe one of you has already done the searching and can inform me or one of you will do the searching and then can inform me. I hate to put up any type of misinformation and I am wondering who Ashley is a Patient Advocate for as she doesn't mention the actual group she works for in the message. If anyone knows anything about this, please let me know. With no further ado, here is Ashley's message:


{I couldn't seem to find any of your contact information, so I hope you don't mind me leaving a comment on your blog!

My name is Ashley Toal, and I work in Patient Advocacy. We’re working on a multiple sclerosis clinical research study assessing the safety and effectiveness of an oral investigational study medication, teriflunomide. We’d love your help in informing the MS community about this study. Since your blog is so influential in the MS community, do you think you'd like to post some of the study information on your blog?

You can contact me any time at atoal@mediciglobal.com and I'd be more than happy to e-mail you the information.

Thanks again!

Ashley Toal

atoal@mediciglobal.com}

Okay, now back to me, me, me.

I was still sleepy this morning but woke up the first time before eleven, methinks it was about nineish. (I went to bed about 9 p.m. so it was about twelve hours of sleep.) I got myself up and threw on some dirty clothes and ate a breakfast of salad and leftover pizza. I also threw some kitty vittles in the wonder cat's bowl.

I watched a little TV and felt tired again but I had taken my morning meds today after forgetting them yesterday until too late. I knew it would be a shorter nap because I had taken my Provigil this morning. The second time I woke up it was about 12:30 p.m. and I putzed around for a bit before taking my shower.

Since then I have played on Facebook, ordered contact lenses online, and dragged my laundry over to another building to use their washer as ours is broken again. I have since dragged it back over to my drier and it's spinning around. I am also washing the dishes in cycles, so many for a few minutes, then back to the computer, and repeat. I fed the cat his afternoon dinner. Now I am awake.

Not singing and dancing awake but awake. Oh, and the 60 degrees predicted for today was a big ole bust. It's raining now and I think it hit the high 40s. I am still wearing my shorts because by golly I shaved my legs and that is just the way it is. You only really get one good day when you shave your legs and this is it so I am showing those piano legs off.

Now to the twitches. I get them primarily in my fingers on the right hand, my eyes, my legs, and the bicep area of my left arm. I sometimes get them in other places like my lips or my buttocks; I can hear Forrest Gump right now telling the President he got hit in the buttocks from that famous movie. I mostly get them in my hands and eyes at night. Before I fall asleep while reading my eyesight gets really wacky from the twitching and getting tired. The words slip away off the page and lines disappear into other lines and letters aren't in words in the correct spots.

The twitches aren't painful, just sometimes slightly annoying, especially in the fingers. Now spasms can be painful. I generally get those in my legs at night and I wish them on no one. I have had spasms so bad in my legs that my whole leg pulses as my calf muscles spasm while the leg is pushed out into one straight line. You can't move or bend the leg and you can barely breathe because the pain is so bad. The muscle cramps and spasms for 5 minutes, then ten, then maybe twenty or more minutes. It's as if the calf muscle is trying to birth itself through the skin. Nice imagery, huh?

People say to get out of bed and walk or massage the muscle. When you get spasms like this the leg is no longer my own. It's taken over by the spasm and I cannot move. The slightest move makes the spasm stronger. It's all I can do to keep from screaming because I try to control the pain by the pregnancy type breathing and prayer. Unfortunately, once it stops and I do get out of bed I am hobbling and the muscle is twitching again which usually leads to another full on spasm and little sleep. This process can go on three times in an evening of "sleep" and basically gives you a rough start to a new morning. These kind of spasms I generally get in the summer, yippee.

So twitches I can handle. Anyone else out there get those annoying little bug you twitches? Mine are pretty much daily but I can deal with them. For those of you with spasms I feel for you, I really do.

I may not write tomorrow as its haircut in the morning and in the afternoon I am going to the doctor's with my dad and family and then we are eating at Red Lobster's for my brother's early birthday. He will turn 30 on Friday which is when he is leaving to return to Iraq so that's why we are going out tomorrow. I'll have to wear one of my new PIP, probably the jeans.

Thanks for stopping by!

Snooze, needing lots of sleep

Lately I have been sleeping a lot. That of course pushes my night time bedtime back a bit to what may be a normal bedtime.

I'm not sure why I'm so tired. Perhaps it's just the last few weeks catching up with me. A lot of stress worrying that every phone call is bad news, which it usually was for a while. Then there were the trips in the car and standing and sitting around in the ICU talking to someone who couldn't talk back. Emotionally, there was another vortex of happiness swirling around because my brother and sister were coming home from Iraq and I was delighted to see them.

Maybe that's why I have been so tired. Then again it could be the MS doing its special thing and letting me know that it was in charge, no matter what I was thinking.

For example, I went to bed late on Friday night for me, somewhere between 9:30-10. I slept through until 12:09 p.m Saturday afternoon. And, I took a nap.

Repeat on Sunday and then today.

I was supposed to get up at 7:30 today for physical therapy at 8:30. I turned off the alarm and there was no way I could get up. I was exhausted. Granted I fell asleep reeeeally late last night, after ten for some reason (perhaps all the sleep I've been getting). I totally blew off PT; I didn't call them today and they didn't call me so I need to call tomorrow and apologize for missing my appointment.

I feel bad about it but apparently not bad enough to get up for PT.

Does anyone else with MS ever get into this type of hyper-sleeping mode?

If I take Provigil for a few days I can forgo the naps but then it seems to catch up with me and I need all this sleep. I know some people with MS experience insomnia and I can't even imagine that. If I had to stay awake almost all the time it would make me wacky, moreso than usual.

Anyone want to comment on sleep issues?

Can I be sick from the doctor's office? Err, yes.

I'm not feeling so well, almost said not so hot, but I am actually feeling hot. All this just after telling the neuro's NP that my fevers have been staying lower. I came home from the neuro's and went to bed and woke up feeling like crap.

Ick.

I took two Aleve and am taking it easy and plan to get some sleep here soon. Not that I often stay up past 9 p.m. because that would cut into my 11-12 hours of sleeping at night.

We did talk about disability at the appointment today and that is something that seems to evoke lots of differing emotions at the same time. I'm still in it with the Tysabri for now and look forward to seeing how that medication works for me. I hope I feel better soon so it won't effect this third Tysabri infusion.

That's all I've got for now. Not so inspired lately with my writing but thanks for stopping by.

Random shiny moments

1.) I love plays on words like the sticker above. The flair buttons and bumper stickers are one of my favorite parts of Facebook. Remember, if you're a Facebooker and want to be pals send me a note and maybe you can be part of my Facebook entourage.

2.) A note on my tiredness and fatigue. My mom thinks that if I sleep a lot I will feel much better. Now that is true up to a point. Provigil and my ADs help me to feel better, along with the sleep. I go to bed around 9:30ish now (late for me!) and sleep until sometime between 8 and 8:30. Then I take another nap for an hour or two after I've been up for a while.

So you can see that I sleep a lot. My mom thinks that all of that sleep will make me feel rested and I should be good to go the next day. If you have MS or know an MSer with fatigue issues then you know that's not the case. I live each day as if it was from the movie Groundhog Day with Bill Murray. I wake up and my body thinks it needs all the sleep it can get, no matter how much it got yesterday. I'm always tired.

3.) I've started watching Arrested Development on Netflix today in between my bouts of semi-coma like sleeping. I like it. It's sharp and witty and sarcasm at its comedic best. Sometimes not having good cable can be a blessing.

4.) Tomorrow is trying to put up the fake tree day. I hope we can survive it.

That's all I've got for shiny crow rambling moments. Believe it or not, I'm tired again.

Monday tidbits

It's Monday at the crack of dawn, actually before the crack of dawn, and I have been up since shortly before four a.m. Weird night with little sleep and my stomach has been off since yesterday whenever I eat, which could be a positive thing on the scale.

My mom called again last night and my dad was supposed to go back to the emergency room. I think he is back home now as I haven't had any phone calls yet. He is scheduled for a heart catherization on Tuesday but that may need to be rescheduled because of the emergency room stuff.

I have plans done for two days at school and I'm working on Wednesday but I don't want to get too far ahead as we know what happens to the best made plans - they get rewritten because of various snafus in life and the classroom.

Today is Tysabri infusion number two and tomorrow is an appointment at my neurologist's office. I want to talk about supplements and my constant fevers and my fingers of lead. Of course, I want to talk about everything that's bothering me but I guess the big stuff is all about the lack of jazz hands.

I also have all the sick leave stuff done and it will be turned in first thing this morning as I joyfully drive my plans in around 6:15. I am hoping that I will stay clear enough to get there in one piece. I have more grades that need to go in the computer for report cards while I am dropping off plans.

I cannot even begin to tell you what a relief it is to have the sick leave stuff done. It ended up being a fifteen page packet that I made into three sets of copies: one for me, one for the head of the union, and one for the superintendent. I spent so much time calling people, typing, looking for stuff, making copies, and whatnot that it's such a weight lifted. Now we just have to hope that it will all work out and I'll be approved for the leave.

Deep breath and exhale......

Sleep, the cat, and sick leave bank

So much for that extra sleep time I was shooting for mentally and figuratively. The wonder feline managed to find a new way to wake me up fully.

Vomit.

Yessiree, vomit and the hacking sound it makes wins out almost every time.

So it's about 5:40 a.m. and the upchucking sounds start. I gently nudge the cat off the edge of my bed by pushing him with my foot. (I didn't abuse him by kicking him but I preferred no vomit on me or my bed things.)

The upchucking sounds continue and produced two tiny gifts/puddles of grayish vomitus. Small little Halloweenie bundles but enough to get me up to clean it up. Then it was time to feed wonder feline because he knewIwasawake and must have food rightthen.

Last night I was productive and made lasagna again and garlic monkey bread that was frozen and needed heating. Yummo!

I also looked up dates from last school year's absences to correlate doctor appointments and IV Solumedrol treatments and those absences for the sick bank leave request. I typed it all up and now have exactly 30 days off due to depression and MS, which means that I should be able to go without any gaps in my paycheck. That's great and something my boss mentioned to me to do.

I awake yesterday feeling refreshed and felt pretty d@rned good. Then I went out to run errands and the cognitive thin spots were showing through like a shabby couch after my cat has exercised his nails. I went to the post office and the lady there insisted my debit card wasn't one, even though I know it is and I've used it there before. I lost the stamps she just gave me during the debit card debacle. I walked outside and couldn't find my car which was right in front of me and the only car of its make and model in the whole d@mn lot.

I did some more errands after that with the same kind of lackluster precision and then decided that was enough for the day and went home for a nap. It's all about the sleep, isn't it?

Wow, sleeping is great stuff!

Yesterday I was at work at 6:30 a.m. and then went back in around 2:30 p.m. I did the double trip for the purpose of getting more grades in and dropping off plans for the next two days. This brilliant idea was drafted so I could get more sleep the next morning, which would be today.

It worked!

The depressed dwarfette slept through until about 7:40! The cat started meowing around 5 something but with an occasional pat he would settle down and I could sleep some more until he meowed again and I patted him, and repeat until I finally got up to feed him.

I feel so much better and clearer. Wow, this is great stuff. I go to bed somewhere between 8:30 and 9:30 so sleeping a lot is clearly something my body craves (along with chocolate and most other yummy foods).

By the way, my Facebook is now working just fine. It seemed to fix itself by the end of the day that I was complaining about it. I swear it was acting up for me. If there is anyone out there who wants to be friended on Facebook, send me an email through my profile page and I'll add you to my list.

I just got a call from my therapist's office canceling my appointment for today. That's a good thing because I didn't even know I had an appointment for today. In my book, it's for next Friday but she said he'd see me in two more weeks. Now the schedule is all off but at least I didn't miss an appointment today! I would have felt like an idiot, moreso than normal.

That's all I've got for now. I might even try to watch Survivor tonight due to the extra sleep. Woohoo, I am a wild woman.

Why couldn't I sleep?

I have always been a great napper. I could pretty much take a nap within an hour of waking up because my fatigue is so pervasive. If napping was an Olympic event, I could definitely represent for the US and maybe even medal! Last night, however, I didn't sleep well.

I guess it must be the Tysabri infusion doing it to me.

I've had IV Solumedrol and I know how to hook up an IV with meds and flush the lines. Heck, I have worked teaching and hooked up to an IV pole, dragging it around the room. As a complete aside, not all IV poles are created equal. If you get a "bad" one you know it. The last one I had kept twirling itself around, maniacally ramming me in my sandaled feet. Ouch.

I've taken Copaxone for almost the first two years of my diagnosis which meant daily shots. My first shot was on Christmas Eve, alone in my apartment, but I just wanted to get it started. Then I later took Rebif for my thrice-weekly torture pricks that make you feel like dried dung in an African desert.

But this one measly infusion kept me awake until almost midnight and then it had the gall to keep me tossing and turning when I finally could get to sleep.

I feel as if there is so much riding on this one medication. Will it make me better? Will it slow down my multiple sclerosis? Will I have an allergic reaction to it? What will I feel like later on? What will I feel like today while I'm there and then after when I come home?

Oh my good golly, too much for me to be thinking about here. It's one medication but I am hoping for a miracle. Is it too much to ask for my life back?

Can I follow through on tasks that I started? Can I deal with the heat of late spring and summer like a normal person instead of having to hide inside like a vampire, minus the cool cape and the blood-drinking thing? Will I be able to walk a reasonable distance, say from my room to the teachers' room, without limping and spasming like a cowboy who has been riding his horse for far too long ? Can I think clearly again? Will I stop living in this pit of depression where everything in life overwhelms me?

Look at me asking for all of these things to make my life better. How selfish can one person be while enjoying the slow spin on this third rock from the sun? As selfish as she wants to be, I reckon.

If you happen to be reading this and you're of the prayerful sort, I wouldn't mind someone throwing up some positive vibes for me around 1:30 this afternoon. Maybe I'll sleep better tonight.