MS Cog Fog, Slump Week, and Grieving

2 coffee makers

Have you ever had a night out drinking and then next morning “replayed” the events from the previous evening in your head? You try to fit the pieces and events together but you know you are missing parts…Everything is a little blurry…. I am doing that now, but not because I was drinking…. I wasn’t.  No xanax, or other mind numbing medications.  But the “blur” is there.

I don’t know which one is to blame, or if its a combination of all three, but I can tell you it was rough, and maybe a little dangerous.  That was yesterday, I’m hoping that I am better prepared for it today.  I have identified the problem, now I want to ‘laugh’ at it and try to prepare for today a little better. (plan for the worst, hope for the best?)

My new coffee makers ( yes two of them) arrived yesterday, and as I sit here drinking my 3rd espresso, I would like to review yesterdays events.  YAH COFFEE!!!! but more about that later.

I remember being woken up at 5 am to take Einstein to work.  I know that I walked on the treadmill at some point.  I remember thinking no workout today because my arms and abs still hurt from the abuse I had given them the day before.  (I think I only ‘remember’ that because they still hurt today….doh!)  I also know that I was on wordpress and facebook a bit, because the notifications and time stamps tell me that I was.  (I honestly don’t remember though)  Did I mention I wasn’t drinking?!?!?
I went to Aldi’s yesterday to buy eggs.  Only eggs.  This I do remember because I had a long discussion with myself that I didn’t need to use a cart for balance, I was only getting one thing and I COULD do this!… I make it to the back of the store, grabbed two dozen eggs, cradled them in my arm like a baby, and made my way to the checkout where I just stood.  I never put the eggs on the belt.  I stood there having the meaningless conversation with the cashier, “Hi, how are you?” etc.  The problem is I stood there for 5 mins, just holding the eggs.  “Oh Shit, I should probably give these to you huh?” I asked.  He smiled and said, “Nope I got you, $2.12.”  I remember that too.  I remember the price of the eggs, but I don’t remember driving home, putting them away etc.

At One O’clock this heavy cloud/weight settled on me.  I felt like I was going to pass out.  Not because I couldn’t breathe panic attack style.  I just couldn’t….. anything.  Well that sucks… I needed to pick Einstein up from work in a couple hours.  MORE COFFEE!!!! Fold the laundry? Somehow you must stay vertical!!!!  Yeah that didn’t happen.  I passed out, sitting up folding laundry.  I woke up 2 hours later to the sound of the 4th call from Einstein….”Did you forget me?!?!?”

OMG!!!!  YES I did!, I mean NO!…oh shit…. Sorry, I fell asleep…… I’m coming!!! I went to the bathroom, tripped over the coffee table, put my shoes on and ran out the door.  ARGH… I don’t take naps, I am NEVER late, in fact, if I am not 15 minutes early people begin to worry……smh

While I didn’t HURT myself or anyone else yesterday, I wasn’t there.  (Although, I did almost hit Einstein with my car for the 3rd time in his life.)  Yes I did just say that I hit him with my car 2 times, once WAS intentional the other I claim is his fault.  ( If you remind me, I will tell you about it in a couple weeks, it’s not a horror story, and it’s something we all laugh about, NOW)

So TODAY, I am prepared for the worst.  Einstein took my car to work, so I don’t have to leave the house until visitation tonight.  My only plan is enjoy my new coffee maker, and just be.  I am giving myself the gift of no expectations until this evening.  When all I have to do is show up.  My girls are going to the funeral home with me.  My parents are meeting us for dinner afterwards, and then I am coming home.  No lists today!

Tomorrow, or next week, or even a week after that ( Yah Tysabri on the First) I will make another to do list, but for now, for today…. I will just be…..

While I am here though, I want to thank everyone for letting me share my pain and memory with you the other day.  Thank you for your presence, support, and kind words!!!!

 

 

 

Slump week- Having a bad day

Have you ever had one of those days where everything that could go wrong does?  You are so utterly exhausted by the end of the day, you can’t wait to crawl into bed and hide beneath the covers for the night.  THAT is what slump week Feels like, but the difference is that you wake up feeling that way.  Who wants to get out of bed then?

If you are going through slump week, it’s important to remember …

This Too Shall Pass.

As I was trying to think of analogies to use to explain slump week yesterday, I came up with a list of things that make most people very uncomfortable or that they dread doing.  If you are trying to explain what slump week is to someone and are at a loss for examples, use one of these?  Just remember to explain that it’s the FEELINGS, that they experience, it doesn’t mean any of these things will happen.

  • Starting a new job, and being at the bottom of the totem pole.  Not knowing the jargon everyone is using and feeling completely lost.
  • Putting away groceries in someone else’s kitchen
  • Having to call an automated phone line and after pushing 32 buttons finally reaching a live person that doesn’t speak your language, or being disconnected, or told you’ve reached the wrong number.  Now repeat!
  • Writing a 2000 word essay or blog post but forgetting to hit save.
  • Trying to start writing again and losing electricity, or internet service
  • Going to a friend’s house to borrow their computer, and they have a MAC when you are a Windows Pro
  • Finally figuring out how to use their Mac, retyping your work and forgetting to hit save again
  • Deciding you need a vacation, packing for a weekend away and not realizing until you arrive that all the pants you packed are your significant others (who is 2 sizes smaller than you)
  • While you are on vacation, wearing the only pair of pants that fit you, needing to use the bathroom in public, and the only person to ask where they are located doesn’t speak English.  While charades can be fun, it is not when the pee is already running down your leg.

I know that this list is not all inclusive, but as I said it’s a start.  Maybe it will help you think of an example to describe the feeling behind slump week.  Maybe it will help you realize that everyone has “bad days”.  Maybe, hopefully, it brought a smile to your face.

Yesterday was definitely a slump day for me.  (Yah IV on Wednesday)  By noon, I wanted to crawl back in bed and I had only been awake for a couple of hours.  I thought taking a  shower might help me have a better outlook on the day.  (I needed to shave my legs anyway and then I could say I accomplished something for the day)

So imagine this…. you are me….

Once you get in the shower, you realize you don’t have shaving cream.  Ok, you will make do with soap. Crap you forgot to change the blade on your razor (or forgot to bring it with you in the first place.)  So now you have to get out of the shower (yes you already got in and had the water running), but you forgot to grab a towel and the bath mat is in the washer…… you carefully navigate across your tile floor to the drawer where you keep your razor blades , change the blade and get back in the shower.  Only to realize, Yes your forgot your towel again.  SMH.  Again, frustrating but manageable.

If you have a SMH (shaking my head) moment you would like to share, please do!  I love meeting and talking to new people.  (It helps you not feel so alone) 🙂  Also, feel free to add my on Facebook if you want to hear more.  Remember, I am Graceful….not! (Grace Fullnot) on Facebook.

 

 

Defining Slump Week Tysabri

Recently, I have had several people ask me to define or explain “slump week” as it pertains to taking Tysabri. As I sat trying to come up with a “blanket answer”, I realized that there isn’t one.  Each person that has MS is going to have a different form of MS. Their symptoms and ways of dealing with those symptoms will also be different.  Then I thought, “who is the person asking the question”?  Do they have MS? Have they recently started Tysabri and they are afraid of “Slump week”?  Maybe they are trying to explain what slump week feels like to someone else that doesn’t have MS?

While I am always happy to talk with people and try to explain, not everyone is comfortable talking on the phone, meeting in person, or even just reaching out to someone in email.  So, I will attempt to explain it here and hope that it helps answer the question for some of you.

For those of you that are afraid of slump week, let me start by explaining what it is NOT.


It does not mean your MS is getting worse or that you are experiencing a flare up.  It may feel like it in the beginning, because your MS symptoms may be a bit more noticeable.  You may be a bit more “foggy” than normal.  Your legs may feel heavier than usual.  If you fight fatigue, you may feel like you haven’t slept in days even though you just woke up from a full eight hours.  Basically, it feels like your MS symptoms are more pronounced than your personal norm.  Everything feels a bit “off”.

It’s also Important to know that not everyone goes through slump week.  For those that do, it isn’t necessarily a full week of more pronounced symptoms, and it may not happen every time before your next infusion.  If you have MS, you hopefully have learned by now that there are ways to work around your challenges.  Maybe you can’t walk as long, or as far as you used to, but have learned that a cane or frequent breaks can help.  The cool part is knowing that, IT WILL PASS!!!!!

For those of you looking for a way to explain it to someone that doesn’t have MS or has not experienced Slump week, think about your audience and try to use something from that person’s life to explain.  For example, if you are explaining it to someone who is a caffeine addict, ask them to think about the way they feel before they have had caffeine for the day.  What if they had no way to get that caffeine fix?  They would spend a lot of time trying to come up with a work around for it, and that is probably time that they were supposed to be accomplishing something else.  Maybe they would be late for work, because they had to stop to buy some form of caffeine.   Or worse, while they were driving to pick something up they almost got into an accident because they didn’t have enough caffeine to focus on driving.  Of course, this example would not work for someone that doesn’t drink caffeine, but you can try to find an example from their personal life to use.  You can also explain that it’s like having a full week’s worth of Mondays in one day.  Another example is sitting in road construction, you will get where you are going eventually.  It doesn’t actually cause you physical pain, but it does make you uncomfortable.

Ask them to imagine being given a task or several tasks, but not being given the tools they need to complete the task.  Sure you can probably find a way to make it work or wing it, but that is frustrating and tiring, not to mention very time consuming and usually unproductive.

As I sat trying to think of an analogy that would work for everyone to explain slump week, I came up with quite the list of examples of life experiences that cause “regular”people to feel frustrated, or unproductive that you might be able to use when trying to explain slump week.  Ask people to think about how they feel when these things happen to them, then tell them they have to do it over and over again numerous times in a day.  THAT is what slump week FEELS like.  It’s not gonna kill you, but it’s not any fun 😦

My decision to start Tysabri Part 5 of 5.

In February of this year my doctor said, “Hey your MS seems to have been pretty stable for some time now, I know you are JC neg, but you’ve also been on Tysabri for about 8 years, why don’t we look at switching you to an 8 week cycle?”

W H Y ? ! ? ! ? ! ?

The long and short of it……

“Someone, somewhere” said “The longer you stay on Tysabri, the greater your odds are for developing PML or the JC virus.  Tysabri stays in your system for 8 weeks anyway, why not get fewer treatments, so you can continue to receive the drug longer?”  Blah, Blah, Blah.  (I hope you can tell by the tone of my writing, I feel and FELT this was a very bad decision for me.)  What the hell do I know anyway, I’ve just been living with MS for 20 years?!?!

Reluctantly, very reluctantly, I agreed to switch to a 6 week schedule.  I would compromise by stretching it out two more weeks, but would not agree to stretch it to 8.  For the first time ever, I experienced what people refer to as “slump week”.  As I sat here trying to define “slump week” for you, I decided to try to “Google” it for kicks.  I typed slump week, and the search finished it for me slump week tysabri with pages and pages of listings.  Heh, so I’m not alone.

For me specifically, I describe “slump week” as all of my MS symptoms worsening.  I didn’t get new symptoms, but the fatigue I have DOUBLED, as did the amount of time I spent sleeping.  I had a harder time focusing.  I felt like each of my limbs had gained 30 lbs, and I spent week 5 on the couch. NOT FUN!

In June, 4 months later, I was at my niece’s wedding in Georgia and I suddenly couldn’t raise my toes on my left foot.  In fact, the only way I could walk without tripping was to try to lift my entire leg from my hip.  (visualize marching?)  I don’t have that kind of strength in my hip, leg, or foot, and I fell 4 times that week before I could get home to Illinois to see my doctor.  I also developed sciatic pain down the right side of my body.  While they say this is not related to MS, I have to disagree.  My body certainly did not like the additional sitting I had to do, or the weird way I was having to walk and it was letting me know with all kinds of new pain.

I spent the next 2 months getting MRI’s, seeing a neurosurgeon, (you know it must be the displacement of my spinal cord from 7 years ago) going back to physical therapy, and eventually being fitted for an AFO for foot drop.  I was angry, depressed, or sleeping all the time.  Wearing the AFO, helped me not trip over my foot, but it caused my calf muscles to spasm daily.  Yah more pain!?!?!

ENOUGH was enough!  Time to put on more armor and fight!jousting

In August, I told my neurologist that I didn’t care what “someone somewhere” said.  I wanted to be on Tysabri every four weeks.  It works for me.  Stop trying to fix what wasn’t broken!  I am very angry with him still ,and I do blame the length between doses as the reason I feel I have regressed.  I know, logically, the heat could have affected me, as could all the “family time”, but my gut says it was the schedule change of the medication.

I have received 2 doses at the 4 week interval again, and I am due for the next infusion  next week.  I am seeing a chiropractor biweekly, and I’ve made it a goal to walk on the treadmill every  day for at least a total of a mile.  (which I have done every day for a full two weeks) I am not “back to where I was” in February, but I am working hard to get there.  One step at a time.footprints