Tag Archives: tired

Sleepy Time

I don’t know about you, but the last week and a half I have been soooooooo tired.  It usually hits me about 1pm or so and gets worse and worse throughout the day.  Like right now……  I could seriously just lay my head down and fall asleep.  But, I can’t.  I have things to do of course.  Life!  Jeez, it gets in the way all the time.  My allergies are also in full swing and I keep forgetting to buy more allergy medicine.  I think not taking it is actually leading to the fatigue I’m feeling.    Who knows really?!   Having a multiple of mystery symptom diseases I could just blame it on a handful of those and just be done with it.  Excuses I have aplenty.

Speaking of excuses, I really do have a lot when it comes to myself.  Me, myself, and I.  I find it extremely hard to focus on myself and fixing things that are broken with me.  I focus all my attention on my daughter and I can’t seem to stop.  I love her and I spoil her.  That’s just how it is.  I’ve piled myself (and her) with activities almost every single day.  It’s pretty draining and obviously is not keeping stress reduced for me.  I’m driving her all over the place for different things.  Why do I do it?  Because I want to give her every opportunity to excel and enjoy her life.  I don’t want her ever to have regrets because she didn’t get to do something or learn something while she was growing up.  She’s spoiled….truly.  But she’s not a brat and that makes me super proud.  She’s a GOOD kid.  A very good kid and I’m totally proud of her.  She’s also my best friend and has been since she was born.  She’s my life and she’s my heart.

Obviously you can see where all my attention goes.  Not much room for anything or anyone else.  I forget that maybe I need to put some of that attention (maybe a lot actually) on myself because I deserve it too.  I deserve to love the person I am…..but I don’t.  Everyday I pray that I will start fixing the broken things about myself.  Everyday I go to sleep kicking myself for another failed day when it comes to those things I swore I would fix.  Everyday I live with such negativity about me.  *sigh*

All I can do though is to try every day to make a change….even a small change….and make it became a new reality for myself.  Small things can add up to huge changes they say.



Posted by on September 19, 2012 in Life, Random Rant


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Should I Have Hope?

I’ve been on the full dosage of the Betaseron for some time now. Amazingly, since getting to the full dosage…and after the first shot of an increase which is never fun….I have felt pretty good! Yay!

I changed from taking ibuprofen 1/2 hour before a shot to taking Tylenol (well, I take generic acetaminophen) 1/2 hour before, then just before bed and then the following morning. This seems to have really helped overall. The acid reflux also has died down a lot. Looking back over the past week+ I can say that I’ve only had a few brief yuckiness feelings in the mornings and then only one day of utter exhaustion. Compared to what was happening, this is way better.

Even though I feel better, this year still seems to be a year of health issues for myself or my daughter. In the past 7 days, I’ve taken her to the emergency room for different ‘possible’ broken bones. Luckily, each time it turned out it was only a bad bruise and no fracture. Last week, she had her fingers taped together. This week, she has a sling. I am hoping that once March closes, our health will be 100% great and not sucky.

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Posted by on March 27, 2012 in Life, Multiple Sclerosis


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And it has started….

I received my training on how to inject myself with Betaseron yesterday.  I had no nerves or fear of the moment occurring.  My nurse was super nice and answered my questions in a way I was able to understand.  (No brain fog was occurring yesterday thank goodness!!)  I didn’t actually get my first shot during the training though.  He would have let me but since it was noonish, we both agreed doing it before bed would be better just in case of side affects.  (Yes, sleeping off side affects is much better than struggling through them during the day).

I actually hadn’t looked at any of the stuff in the training kit before the nurse arrived.  I was imagining that the shot was all just ready and waiting to go into the auto-injector.  But nope.  You actually have to mix the stuff so there are more steps than I thought.  Thank goodness I had no memory issues yesterday either but even if I did the training kit has this wonderful photo guide for each step in getting the shot prepared.  I had it out last night when I was ready for the first shot, but didn’t need it.

My daughter watched me prepare everything up to  the point of where it was ready to give.  But once I was going to do the shot, she went somewhere else.  lol!  I didn’t have any other family member or friend take the training. It will be up to me to give myself the shots.  I’m okay with that.  I like to take things into my own hands anyway.

So, I decided my right thigh would get the honor of being the first.  (All the other parts are soooo jealous.  ha ha)  It was……..uneventful and not at all painful.  (I don’t mind shots anyway but this was hardly noticeable).  The auto-injector is VERY LOUD when you press the button / lever thingy to inject the shot.  That is very annoying but I can deal with it.

I was wondering how I would do with sleeping.  I took the ibuprofen about half-hour before giving myself the shot (per suggestion of nurse).  Then I gave the shot about 30-45 minutes before I went to bed.  Well, not sure if its a side-affect or not but I seem to have been awake more than sleeping the whole time.  I also have just a feeling of muscles aches especially around my neck, back and arms.  I’m exhausted this morning and more than a little spacey feeling.  It’s that quick exhausted fatigue that I have as one of my symptoms.  It seems to be hanging on longer than I usually experience in one episode (usually it’s just 1/2 hour then it goes away, then comes back later, and on and on).

The area where the shot was isn’t red or hurting at all.  That’s the other thing he warned me about where about 1/2 the people will get a red area that can stay for a long period of time. This first shot is a low dose so I’m not counting my chickens yet that I’m out of the woods.

So, today I’m staying home since I feel run over by an elephant.  I hope how I feel isn’t actually the side affects because I don’t want to feel like this everyday.  It’s difficult to function and hurts.  *sigh*  The wonderful life of someone with MS.

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Posted by on February 8, 2012 in Multiple Sclerosis


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Day 19: Dry as the Desert but Found Some Green

I’ve been feeling pretty good the last several days so didn’t think I needed to bitch and moan on my blog.  lol.

Anywho, I did get approved by insurance to start Betaseron.  Today I got the call from the person that will train me on how to do the injection.  This may freak out the majority of people, but I have absolutely no qualms about it.  I just wish I was already started just because I’m not a patient person.  Having to wait for the approval was annoying.  Now I have to wait fo the training kit and the medicine to show up before I can call the trainer back to schedule the appointment.  At least this is all done in my own home.  That totally rocks!  I guess I’m supposed to get a call from the reimbursement office also from the med company.  I hope they call soon and tell me good news about that.  Fingers crossed it will be fine.  Oh and I have to get my labs done soon soon soon.  (If my daughter wasn’t sick today and I didn’t have to stay in convenient care with her for over 2 hours maybe I would have accomplished that today.)

I’ve been getting some killer headaches in the middle of the night.  I’m pretty sure I brought them on from getting dehydrated.  Stupid me.  I should have known better since first my heels cracked, then my lips got all raggedy, and then dry skin.  Yep, pretty sure I was sucked dry and once I started drinking water I started feeling better with that.  The only other things going on is that I’ve been bitchy irritable…..for no reason.  I really turn nasty at the drop of a hat.  No, wait…dropping a hat takes longer than it does me biting your head off.  Grrrr, I say!    What else?  Hmmm, well my speech is kind of choppy and abrupt stops to the sounds.  Kind of hard to describe that.  I also get exhausted out of the blue.  One minute I’m fine and the next I can barely keep my eyes open.  Lasts about 30 minutes each time.  I would love to just take a nap each time but that doesn’t happen in the real world.

I just couldn’t resist taking a bath the last two nights BUT I did go with only warm water.  It wasn’t bad at all.   I’d prefer super hot, but I think I could live with this on occasion.  I just couldn’t bear seeing my giant tub anymore.  I caved!

I tried a ‘green’ drink today.  It was the Naked Juice:  Green Machine.  It looks totally disgusting so I didn’t look.  I just drank from the bottle.  It was actually good but really sweet which I thought was totally weird.  Anywho.  This drink has fruits (of course) but also has some funky ingredients that I never thought would be okay in a drink.  It has broccolli, spinach, algae, wheatgrass, parsley and many other funky stuff.    I have no idea if there is enough of that stuff to get any good healthy benefits or as much green goodness as I should, BUT I figure it has to have some benefit for me.  What I do like about it is that I don’t have to make it and it is not a powder.  Quick and easy to grab and go.  So I went and bought 3 more for the rest of the week (2 servings per bottle).  I need to really straighten out my eating.  Such a freakin struggle as I really dislike so many things.  I’m trying to eat more protein and throw some green things in there too.  Stopping all the sugar is a must but I’m totally addicted and I really don’t want to give it up (because I’m addicted).  *sigh*  A struggle.

I’m cutting out so many extra-curricular activities.  Anything and everything is going if it can.  My stress levels are already decreasing.  I hope it stays that way.






Posted by on January 24, 2012 in Multiple Sclerosis


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Day 9: What Shall I Read?

Since this diagnosis of MS is all new to me and because I’m an avid book reader, I decided to go browse Amazon to see what books are out there on the subject.    I did this last week probably day 1 or 2 after the diagnosis.  I found one book of immediate interest because it is all about the first year.  (Seems like there are a whole slew of books about medical conditions and the first year.  Who knew!)  So I ordered the book ”
The First Year: Multiple Sclerosis: An Essential Guide for the Newly Diagnosed” and it arrived at my doorstep yesterday.    Has anyone else read this??  I’m thinking of buying Awkward Bitch: My Life With MS also as it looks like a more entertaining read and may help me relate.

I’ve looked at the table of contents but that is about it.  I’m already behind in the reading as I should have read through about 70 pages!  I, of course, have been reading a Fantasy series instead!  *smile*  (currently on book two out of three of the series so can’t stop now!!)  Tomorrow, or maybe even tonight, I’ll read out those 70 pages and get up to speed on things I suppose.  Otherwise I’ll think the book has no purpose if I keep delaying it.

I wonder about books surrounding what you should eat when you have MS.  Hell, I know I eat like crap but I love the crap food.  I’m not a big raw food person or healthy foods person.  It’s something I know I need to change and I definitely probably should change now with this MS crapola.  I hear green juicing is big  (or just a big hype for 2012).  I toss it around inside my head if I could actually do that.  It would be a different lifestyle and a shock for me to do but maybe gradually I could do it.  It sure would be nice if I had support people doing it with me to make me stick to it.  Immediate family lets me get away with whatever because I can become bitchy.  lol!

Symptoms wise my day has been better for the Bell’s Palsy.  I can’t seem to tell what is BP and what is MS though.  I’m exhausted today so that has to be the MS.  Typing & writing issues continue and that could be either.  I’m clueless with what is causing it but I know how I feel.  Light still bothers me and I keep running in to things, however, my drinking and eating are much better and my face has dramatically improved.  Yippee for that!!!

I wonder if I can stay awake past 7pm tonight.  I want to sleep!!!!!






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Posted by on January 13, 2012 in Multiple Sclerosis


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Day 3: Frustrated as all get out

It’s 6pm and I tell you I am so ready to just crawl in to bed and not have to talk or do anything else.  Talking was crap today.  Crap, crap, crap.  Grrrr.  I have been slurring like a drunken sailor!  On top of that, I had a task to type out a bunch of addresses this morning so I could get to the post office.  Okay, not really a bunch.  Just about 25. Took me FOREVER!   Might as well throw in all the issues I was having while eating too.  It definitely was not normal eating.  I was dribbling (ewww) and felt like I had to open my mouth super wide and then concentrate…yes, concentrate…on what I was doing and getting it chewed up.   Licking my lips was also….weird.  Hard to explain how that felt.  My eyes have been doing some freaky things to.  As I sit here they will start repeatedly blinking ….like a twitch almost.  They also just feel like I can’t focus on anything at all.  And talk about feeling spacey and tired.  Might as well throw in that I tripped a few times too.  Ugh.

For these types of symptoms this seems to have been the worse day for them.

Of course, it’s annoying when I’m repeatedly asked what I said.  I get so frustrated that I just say STOP.  I can’t help it.  If you can’t understand me then just stop.  Stop, stop, stop, stop.  I just really wanted to scream.  It’s so FRUSTRATING!!!!!  My daughter (she’s 11) and I went shopping today.  She is so understanding and ‘mature’ for her age.  She ‘gets’ that I can’t help these things and she helps.  But sometimes she goes into that ‘Ask Me A Million Questions” routine and today that happened a lot.  After saying STOP about the 3rd time she did.  She just says ‘It’s okay.  I understand.’.  And I honestly think she does.

I hope my sleeping is not woken by another headache. Last night the glorious headache arrived right about 2am.  It always seems to be that time.  It was a lovely headache behind my eye.  Those suck.  Well, all of them really suck.

SUCK SUCK SUCK SUCK BLECK!!!  Yep, that’s how I feel.

Tonight a little worry has started to creep in to my head.  My symptoms are noticeable today…a lot.  They weren’t like that before I don’t think.  Hell, I could just not remember. But it hasn’t happened for quite some time. Another reason I think it took so long for the diagnosis. Anyway, now I feel like they are worse so that makes me wonder how bad they will get.  Am I going to be able to even talk a year from now?  Will I be able to feed myself?  Will my eyesight get so bad that I’ll have to have a service dog?  Will I lose the ability to type or write?  Really scary stuff now. *sigh*


Random Note here:  I want to thank all those that have commented.  It helps to know that someone out there knows what it is like.  THANK YOU!!!!

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Posted by on January 7, 2012 in Multiple Sclerosis


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