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Feeling prettah, prettah, prettah….good

No news from me means one of two things.  One:  I’m busy as all hell or Two:  I’m feeling pretty good.  In my case, BOTH are true.

I’ve decided I am not even going to think about MS anymore.  When I do…well I feel crappy.  I know that positive thoughts can do wonders.  I wallow away in a lot of negative thoughts and so I’m trying to turn that around.  I’ve started doing some positive affirmations in the morning when I first get up.  I also am stating my ‘I Am’ wishes (affirmations) throughout the day.  (Thank you Dr. Wayne Dyer!)

My wonderful daughter is in lots of things (because I keep putting her in them.  lol!)  I’m a typical mom I imagine.   We moms will work a full-time job and then grab our kid to take them to some type of practice or event.  We get home sometime after the sun has already gone down.  We really are super-moms!!!   The good news (I think) is that I’ve been able to keep up with it.  Yes, I have days where I am feeling the MS fatigue or something, but most days and most hours of the day I feel good. Woohoo!!!!

My focus this month will be to continue the positive affirmations, to really, really try to eat conciously and to not put some things off to the last minute (like sewing pageant costumes).  Have a great October everyone!!!!!

 

 
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Posted by on October 1, 2012 in Life, Multiple Sclerosis, Random Rant

 

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Head Tilt Mayhem

Yesterday I experienced something I never ever ever want to experience again.  EVER!

Let’s start at the beginning.  I felt pretty good for the most part until about 12:30pm.  Oh, I guess I should tell you that Thursday I ended up leaving work a few hours early because I was stupid and went to read outside during my lunch break.  I lasted a whopping 5 minutes and then came in as I was utterly exhausted.  The MS exhaustion that is and I couldn’t keep my eyes open. So off I leave for home and crash the rest of the day in my bed.  Okay, so Friday I wake up and feel good.  I little achy but that is my norm.  Around 12:30pm I head over to my thyroid ultrasound appointment.  All is well as I get there early and get in early.  Woot!  Then it happens.

The ultrasound tech lady asks me to lie down with my shoulders at the top of the pillow so my head is tilted down.  So I hop up on the table and proceed to do as she asked.  Immediately, I’m feeling dizzy and a little odd.  I wanted to watch the screen as she started to do the right side of my neck but that was making the feeling rose.  So I close my eyes.  That doesn’t help. The dizziness continues to get worse, then I start sweating and I’m getting chills like you do when you have the flu.  By the time she moves over to the left side of my neck and telling myself to take deep breaths and relax.  However, now I can feel my hands starting to tingle and I’m really not feeling too hot. She finishes on the right side and tells me not much longer.  I haven’t uttered a word the entire time and am praying over and over to make her get is down as fast as she can.  Well, the last part she ultrasounds is the center of my neck and that really, really, really makes me feel horrible.  Its so uncomfortable and my entire body is hating it and making me feel horrible.  She finally finishes and I slowly raise up to sitting level and I tell her I have to sit awhile before I go. When I sit up things get worse if that is possible.  Both my arms from elbow down through my hands start vibrating internally.  I’m not talking tingling.  This is full out vibration as if I was holding a jack-hammer but it is inside my body.  My legs are weak and basically my whole body and I feel I should get to the bathroom.  I’m sitting there thinking something is seriously wrong and maybe the tech should be calling a doctor. But I don’t say a word and actually was miffed that the tech didn’t notice I looked like death and call someone herself.  Pfft.  Well, the vibrations start to diminish some and I decide to head to the bathroom out in the waiting room area.  My whole body was soaked and I’m sure I looked like death walking there.  I made it though and stay in the bathroom for awhile until I don’t feel quite as bad.  I look at my palms and my feet and they are bright red.  Well, I tell myself to walk out to my car and sit there as long as I want.  I make it out to the car and know there is no way I can go back to work but I’m also thinking there is no way I can drive 25 miles home. I try to think how I could get home without driving.  The hubs doesn’t work in the same town or even close so I would be waiting forever for him.  I supposed I could call people at work, but then I think that would mean I would have to leave my car in the clinic’s parking and it would get towed if left overnight.  I think I could possible get two people from work to help out but I don’t want to be a burde.  Soooo, I decide I will drive home.  Yep, stupid.  The drive home I have the air conditioning full blast and I’m still sweating.  I’m so out of it that it is very hard to focus on anything.  I’m driving like a zombie I imagine.  I took it slow.  I talked to myself (inside my head) the entire time and prayed and prayed to make it home safely.  I had to repeatedly blink my eyes to focus.  Towards the end of the drive I had to start squeezing my face or pinching myself to focus.  Well, I did make it home and I tore my clothes off as I get inside and lie down and fall asleep for 2 hours.  The rest of the day I spent in bed because I was wiped out.  I didn’t feel that horribleness anymore but it took its toll.

It’s the next day now and I’m weak all over. A trip to the grocery store was tiring.  Taking the laundry downstairs and then bringing it up after it was finished was tiring.  Every time I have to go up stairs or down stairs I seriously think I need to consider moving to a new home that is single level.  This has been in my head now for quite some time.  It seems inevitable that this house will not work out for me with MS. Today I also have stiffness in the very lower calves and ankles.  Yep, another thing I’ve noticed.  I wonder if this is what they call spasticity.

Yesterday was frightening. I had moments where I seriously wanted to die rather than feel that horrible. I really thought I was going to pass out driving home.  How stupid of me but I didn’t see any other choice.  You see, I hate asking for help and honestly I don’t even know who I can ask for help.  Everyone that I know has there own problems and I don’t want to become one of them. I’m pretty much a loner and I don’t reach out for anything. I’m not social so my circle of friends is very very small and practically non-existent.  I have people that are acquaintances and are my friends but we don’t go out and do things together.  So there is a limitation of how much I would open up.  It’s very hard for me to open up.  Too many things have happened in my life that I’ve really closed myself.  But, then again, I’ve always been this way. It’s been only a few times that I’ve made really good friends and then circumstances (distance) pull us apart and it fades away.

I guess with yesterday’s head tilt mayhem, I’ve finally had a scary moment which I believe was MS related.  I’m pretty sure it was related just because I tilted my head back.  Lesson learned:  Never ever tilt my head backwards lying down or even standing up.

 
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Posted by on August 25, 2012 in Life, Multiple Sclerosis, Thyroid

 

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Happy Dance!

I am officially OFF Betaseron!!  HAPPY DANCE..woot, woot…Happy, Happy!!!

I just returned from my neuro appt and she has permanently taken me off Betaseron and put in my records that I am allergic to it in a bad way.  She said I was the top patient of hers with the most adverse side effects.  In fact she thinks I’m special!  HA HA HA  (yes, I am in many ways).

I went in determined to say what I wanted to say about medications.  Guess what?  She agrees that for now I don’t need to be on any medication but I will be monitored.  She kept driving that home that I need to be monitored and if my MS starts showing up that we would talk about getting on a different medication.  I’m okay with that actually.  So, I go back in 3 months for a check-up, I increase my Vitamin D to 5000 a day, and an MRI in January.

I can’t wait for the following to go away again from the Betaseron still in my system:

  1. Eating everything in sight.  My appetite increases ferociously on this.
  2. Muscle fatigue and nasty pain going away
  3. Swelling in my feet and hands go back to my normal swelling
  4. Heat intolerance going back to what was normal for me before all this.
  5. ENERGY to do things
  6. Fatigue going away.  I went to bed at 7:30pm last night and that was struggling to stay awake.  Ugh!
  7. Depression going bye-bye
  8. Stress surrounding all this going away

YIPPEEE!!!!!

 

 
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Posted by on July 17, 2012 in Life, Multiple Sclerosis

 

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What’s Up Peeps?

Yes, I have been MIA on this blog for some time. I really haven’t had much to say about my life and this disease. I’ve been at the full dosage amount on Betaseron for several weeks now. After switching from ibuprofen to Tylenol, I have gotten rid of most of the crappy, nauseous feelings that I was experiencing the day after a shot. I thought all was going well. Then, of course, I start having the muscle weakness/fatigue and extreme exhaustion. I ache all the time. The time I feel the muscle weakness the most is when I am upstairs in my house and have to come down the stairs. I have to hold on to the banister and support myself on the opposite wall. I have to creep down the stairs and really pay attention to every movement I make. I feel like there is going to be a day that I do something stupid and I fall down the stairs face first. That would suck.

This past Saturday was one of those days I basically slept the day away. Not on purpose. I wasn’t trying to just veg out and relax. I was experiencing that exhaustion that comes out of the blue and hits you like a ton of bricks. Nothing to do about it but fall immediately asleep. I did this multiple times. What a waste of a day.

Last Friday my neuro called and said my latest bloodwork shows a slight increase in the stuff they look at for liver functioning. I go again to the medical center vampire to get it checked next week. I suppose if it is still elevated, or even more so, I will have to make some type of decision again about medication. Well, folks, if I have to change, there is a good chance I can’t afford any of the other meds due to my insurance copay. Oh joy. I thought I was through with this hassle and stress.

I’m trying to focus on getting healthier. I’m like a broken record with this. Unfortunately stressors keep coming up that throw me off and health takes a backseat. I need to stop this. I hope I can. I’m thankful for the support I’m getting from some of my co-workers that are helping me figure out this stuff. I actually went on a walk at lunchtime today rather than sit on my butt in front of the computer. Last Thursday I signed up for membership to Planet Fitness as they were having a great pre-sale. I also started using myfitnesspal.com to keep track of everything.

One step at a time….

 
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Posted by on April 16, 2012 in Life, Multiple Sclerosis

 

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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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Oh Bother!

I haven’t really had much to write about so I’ve been kind of quiet with posts. Sometimes I just can’t even figure out what to write about. This all must be extremely boring to read actually. Who really wants to hear about all the crap going on in my life with this MS? Sometimes I just feel like I’m a whiner or something. *smile* Well maybe I am! This is the only place I can whine. I hate whining to people in person. So, I do it here.

Here comes the whining….

I am now on the .50 dosage of the medication. The first one at this level I shot in to my upper arm area. This was the first time that I had muscle ache/pain lasting for about 48 hours. Certain movements of my arm were very uncomfortable. But I did survive it.

The last several days I’ve had all the muscle weakness pain crap going on. It feels like I was in a bad accident with the type of soreness this is. Today my upper back/neck is messed up even worse with sharp pains. I have limited range of turning my head either direction and it is stiffening up even more as the hours tick by. *sigh* The sucky part of this muscle crap is that I take Flexiril every night before bed. The nights I have the Betaseron shot I take two instead of just one. You would think that taking a muscle relaxant like this I wouldn’t have any pain when I wake up. NOT! On top of that my eyes are killing me and my vision was blurry today when I was driving. That’s always fun especially with the monsoon winds that seemed to be occurring at 5AM this morning.

I decided to give up pop (soda) for Lent and so far I haven’t slipped up! (amazing for me. ha) I have been drinking more water and slowly also trying to kill my tea addiction. I also decided to not eat any candy and to try to avoid high-fructose corn syrup (article about issues with HFCS). I’m trying to give up the other desserts & sweets too but so far that has been a complete losing streak.

I started taking Evening Primrose Oil capsules (1300mg) and Bee Pollen (500mg right now but will probably up to 1000 in about a week). I’m also going to start B12 supplements.

It seems I have just two side effects that I can figure out that is related to the Betaseron at this point. The first one is insomnia. The Flexiril helps with this though (as long as I haven’t run out like I did this past weekend. grrrr). The other is really really bad acid reflux to the point that it is also very painful as the food passes down my esophagus. It’s not the swallowing that hurts but I can actually feel the food pass down my esophagus about mid-throat. This hurts really bad some days. Of course, I would get a side effect that is rarely known with Betaseron but according to my neuro this is one. Go figure!

Today is one of those days I wish I was just curled up in my bed because everything hurts.

 
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Posted by on February 24, 2012 in Multiple Sclerosis

 

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Number two down and out of the way

I’m in shot heaven I think.  Well, not really heaven but these shots have such thin needles that I can’t even feel the shot!  That totally rocks!!

Last night I decided to give the shot much earlier.  You see, on Tuesday night I felt like I was awake the entire night.  I get up Wednesday morning and felt really exhausted and my muscles were so weak and sore.  I figured that maybe I should give the shot earlier so that when I woke up before the crack of dawn (4:45am…yes AM!) that hopefully I wouldn’t end up like Wednesday.  I also took a higher dose of the Flexerall I take each night to prevent nighttime headaches.  (It also helps me sleep the entire night).

The good news is that I slept most of the night until about 2;30am and then just kind of kept waiting for the alarm clock goes off.  I’m thinking this betaseron has a side effect for me in that it keeps you awake and alert.  What do you know?  It does have that side effect.  Lucky me.  NOT!  I’ll have to discuss this with my neuro to find out what I can do to kind of curb that because it has been a problem for me without this new med so could get really annoying as time goes on.

What else have I noticed?  I get muscle pain/joint pain in my neck and shoulders when I’m sleeping.  Of course I can’t tell what is symptoms of MS and what is side effects of new drug because a lot of what I’ve been feeling this week while I sleep I have had regular occurrences before.  That leads me to the question of how does on know when they are relapsing??    My symptoms are all over the place and never completely clear that I’m clueless as to what is even normal and not normal nowadays.  How does the doctor even know when you are in remitting????  I’m serious here….I have no idea.  Can someone clue me in on this?

Back to the shot last night.  I was going to attempt my hip but couldn’t really figure out the one handed shot at all.  I guess I’m just going to have to skip this zone on both sides unless I figure out something.  I almost attempted it even with the awkwardness but figured I better not with only shot number 2.

Oh, and I am not having ANY reaction to the shot site…..yet.  It’s hard for me to even see where it was given.  Fingers crossed that lasts!

 

 

 

 
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Posted by on February 10, 2012 in Multiple Sclerosis

 

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