It's Been Good

I need to finish the posts that I start. I also need to carry around something to make notes on for future blog posts - these things would make me a better blogger.

anyhoo

I have had a great summer. Whatever happened to me and my wobbles back in June (relapse or stress induced) didn't last long - maybe four or five days. My fatigue level has been manageable and my body is regulating it's temperature.

I'm going to repeat that last one - my body is regulating it's temperature...like a normal person! I know, I know, my house is cold like a walk-in freezer. But when I have been out and about (which was a lot last week) I haven't had to carry around a towel to wipe my brow! No wait, I have carried around a towel, I just didn't use it.

I realized this the other night and exclaimed to Jason, "The fire is down, the fire is down".* My thermostat is currently f-i-n-e.

*a "fire" was the word used by my first neurologist to describe an inflammation when I complained to him of symptoms returning...he said that "the fires were high".

So is there anything else that could possibly make this a great summer?

Let me list a few:

1. I finally got to test out one of those single paddler plastic kayaks and enjoyed it
2. I spent an afternoon at a water slide park and didn't get fatigued OR dizzy
3. I had a great birthday complete with a picnic, my first William and Catherine book and a cherry chip cake

I think that is enough for now. The summer isn't over.

Fatigue?

I'm writing a post about about MS fatigue, while fatigued.  How's that for writing about what I know!
And let me just say - I know it. I don't understand it, and neither do the specialists, but I know it. Fatigue is the most common symptom of MS, and is experienced by approximately 80% of people living with MS (it is also a primary cause of early departure from the workforce).

There are a couple of theories on what causes MS fatigue: a special fatigue, referred to as lassitude, is unique to people with MS. Unique and thought provoking. One of the top theories is that the fatigue is related to the activation of the immune system: the immune system releases substances to carry messages between cells. Another theory (my favourite) is that an MS brain has to work harder to get the same tasks done as a non-MS brain (working harder means using more parts of the brain). The fatigue can manifest in two ways: a general feeling of tiredness or muscle tiredness.

So what is so "unique" about it?

Lassitude:

• Generally occurs on a daily basis
• May occur early in the morning, even after a restful night’s sleep
• Tends to worsen as the day progresses
• Tends to be aggravated by heat and humidity
• Comes on easily and suddenly
• Is generally more severe than normal fatigue
• Is more likely to interfere with daily responsibilities

This is not say that there aren't other factors that can cause fatigue in MS. Certain medications, quality of sleep, and a need to expend more energy for simple tasks (like brushing your teeth) can also play a role. MS fatigue, much to the frustration of the MSer, can be misinterpreted as depression or a general lack of trying or laziness.

I experience both a general feeling of tiredness and muscle tiredness. Some days, it's as if my limbs are cast in concrete: every step is an effort, I'm slower moving and throw in the towel a lot sooner. More often than not, these "concrete" days are accompanied by an overall cog-fog, but cog-fog doesn't always come with "concrete". With MS, you never know what you are going to get. Or when you are going to get it, which is when I experience the worst of my MS fatigue - the fatigue that sucks me down.

As I listed above, it can come on suddenly, unexpectedly. For me, my face changes. My eyes water. I start to feel anxious and scared; scared that if I fall asleep, I won't wake up again. It's as if I'm sinking. I want my bed. I need my bed. I can't get my thoughts out clearly.

MS fatigue is a real part of MS. It's hard for us to explain, and I'm sure it's hard for you to understand.

negatives

Hot hot hot. It's 15 degrees (and overcast) today, and I am HOT. My internal thermostat is whacked. Broken. Misfiring. Screwing with my happiness and comfort.

My face is covered in beads of perspiration. I radiate heat.

And to top it off, I think that the 44mcg of Rebif is creating more/greater nausea on my P.I.D days. And more headaches.

And my left leg is uncomfortable: it feels like a stretched elastic - and every once in awhile (okay, every five minutes) it releases, somewhere in my leg.

Did I mention that I'm still dealing with a rough run of fatigue?

These are tough times.

Last week, and I think even for a couple of days the week before, I napped every day. But I still pushed through - trying to be "productive" everyday. So far, since Sunday, I have done pretty much NOTHING. I don't even have the desire to be "productive".

For a change, I'm not fighting with myself to "do" something.

Emily

Oh yes, and here is a Rebismart update. I can no longer handle the pain associated with injecting the Rebif in my thigh. I've tried an icepack prior to the injection, and maybe in a couple of weeks I'll try heat. But for now, I have dropped my thighs. I'm in no frame of mind or physical space to put myself through any more pain than necessary.

Uh Oh, I'm Complaining

Today is a traditional P.I.D. day for me...possibly accelerated by being over-fatigued. I don't know if over-fatigued is an actual condition, but this now how I will, from here on in, refer to day's like today. I haven't been able to control my "I have to be doing something to be valuable" tendencies, and now I'm paying for it. I'm cranky, achy, angry, sad, frustrated...

Determination, a stubborn personality, adrenalin, and stupidity have gotten me this far...and have now sucker punched me.

I'm angry with myself, I'm angry with my situation.

I'm achy...because it's a P.I.D. day (for tomorrow's injection, I get my first 44mcg dose).

I'm sad because I don't have the physical or mental energy to do things...and I'm sad because I can't believe that my life is like this.

I have all but given up on house cleaning. I seem to be able to spend my time on one thing...my bead hobby - and nothing else. If I was cleaning the house, I wouldn't have enough energy for my hobby...I don't imagine that would make me feel any different than I do now. Today, and for the past few days, I'm not even spending time with my beads. I did go to aquafit yesterday, and I will admit that I had to push myself to go.

And don't get me started on eating and exercise! I have less than three months to "fix" my triglycerides...I'm not off to a good start. I don't have the energy to 1) assemble a meal 2) do a thorough and healthy grocery shop 3) make a meal plan 4) eat much more than ice cream or cereal...soft and easy foods for me.

And where is Jason in all of this? Apparently, I'm not supposed to rely on him for healthy eating. So he is in the driver's seat of the car...taking us to the restaurant. He has had his own troubles for the past while...

But I broke it to him the other day...and reiterated it today...I need to be carried. I feel as if I have been carrying us for some time...and I'm tired.

Emily

After Aquafit

Aquafit tomorrow!

Last week, following the pool, I went to Tim Horton's with a couple of the other "pool sharks". A large part of me, just wanted to get home and crawl into bed. Aquafit (and peeling off a wet bathing suit) makes me crave my bed: it's a tiring event.

But I discovered that because the Tim Horton's is close to the pool (not to mention on the route home), stopping to re-group is a good idea. I can have a treat...I can rest up for the drive home...and I can spend some time with "people". I don't spend much time with "in-person-people" these days.

And as one of the "sharks" said...it's good to spend time with people who "get what you are talking about".

Emily

what is so important?

Even though it's expected - I don't like the fatigue that happens after a good stretch. That sounds strange, because I don't like any kind of fatigue. So to be more specific, I don't like that I have experienced what Jason and I call "a good run" of busy-ness, and now, I can't do a darn thing.

Once again regarding my fatigue, I hear myself complaining to Jason, "I don't like this". His response, "You say that every time."

Yes, I do.

Why?

Because it isn't getting any easier. This is not what I want.

Would it be easier if I adjusted my attitude...personality? Maybe then I wouldn't forget everything that I just accomplished.

What is so important in my life that I can't accept the fact that I just need to lay low...zone out on the couch or lay in bed for a couple of days?

What is that I want to do RIGHT NOW?

put away Christmas gifts, put the mandarin oranges in the fridge, clean up the clutter in the family room downstairs, organize my sock drawer, put away my summer clothes, organize my closet, read my new book, edit photos, organize photos on my computer, make jewelry, play on the Wii Fit, pluck my eyebrows, make a dinner that doesn't involve reheating leftovers, start some new crafts (knitting and sewing), organize the desk in the basement, write a blog post for emmsgems, make family calendars for February 2010, download CD's to the iPOD, put away months of magazines, request copies of my MRI's from the hospital...

...and that's just off the top of my head!

I want a consistent, level (no surges or rations), and happy energy.

But why "I don't like this", is more that just feeling too exhausted to do anything that I want to do. Experiencing full on fatigue scares me. I become more cautious when eating. I make more mistakes while communicating. The fog feels thicker. I feel useless and like I'm a disappointment.

And I feel like it won't end.

Emily

Workshop Week 4

The past two weeks of "class" have been focused on posture, proper sitting, standing, lifting, working...and sandwich making...to use the least possible amount of energy. Good body mechanics, and using your body efficiently can help to bank energy.

Efficiency means using larger and stronger muscles when you can; avoid strain because healing a strain takes up extra energy; when sitting or resting, be in a position that is restful (slightly reclined (but not slouched), legs supported, and support for all body parts).

For me, I feel as if I already have this knowledge - but a refresher, as well as other ideas of how to accommodate these practices in to real life is helpful.

What has stood out to me:

There is an important artery behind the knee, where if compressed while sitting, can slow blood flow (which is low energy).

What this means for me:

I need a stool for my feet while I'm sitting at the kitchen table.

Another thing that has stood out to me:

Try to keep your body compact. Whether you are sitting, eating, making dinner, reaching, bending, keep your back straight, and try to keep your elbows close to your body. Commonly used items should be kept at a height that is in between your shoulders and your elbows.

What this means for me:

My Mini-Wheats cereal is up too high.

The only good thing about my pantry is that Andrea once made up some baskets for little things in the pantry, and labeled them for easy access.

Emily

Workshop Week 3

This past Wednesday was week 3 of my MS fatigue workshop. We are halfway done, and I'm wondering what I have learned. One thing that I have learned, as I have already mentioned, is that I'm not alone, and I'm not crazy! Maybe that is enough right there.

I'll continue to think about this.

But let me tell you a story first (as I shared with my workshop)

Last week-end Jason and I packed up our car, and left on a 4 day getaway to Northern Ontario. We had the following for luggage: 2 pillows, one suitcase, one travel fridge (which plugs in to an outlet in the car), my laptop, and an "everything-but-the-kitchen-sink bag". We were set to stay in a hotel twice, and when we do that, we bring everything inside except for the pillows.

On our last morning out to the car, from the hotel, I had the keys to unlock the car, and pop the trunk hatch. I was rolling along with the suitcase, my laptop, and my purse. I stopped at the back door, and opened it for Jason so that he could put the fridge in, and hook it up. I made my way around to the trunk, and prepared to lift the suitcase in.

*along comes Jason, making a move towards the suitcase, to lift it in to the trunk.

*Emily walks to the side of the car, assuming she could sit in her seat

The fridge is not hooked up. It's sitting on the seat, not yet pushed to the center.

This frustrated me. I thought that we were being efficient...working as a team. I didn't think that we needed words - I assumed that Jason would do the fridge business, and I would load the trunk.

Jason had other thoughts - saving me spoons.

End of Story.

My workshop group thinks that I am crazy. I should be appreciative of having someone who will do all of the work. For the single women in the group, they only have themselves, and that can be physically tiring (please note, this is not my observation or commentary...this is what they mentioned).

For me, when I'm able to do something, I want to do it. There will be enough times when I am unable to do things, and will need and welcome help.

Does physical work/exertion deplete spoon count? Yes, it can. But at that time, I was choosing to spend that spoon.

Does having me run out of spoons (or run low) place more stress on Jason? Yes, it can.

So I have to think of my spoon supply on a daily basis...and be fair to myself and Jason. And maybe just do less work.

Emily

Fatigue Workshop Day 2

All six of us returned to our little room in the rehab building. Not quite as chipper as we were the first day, but all very thankful to be able to participate.

So what did we talk about?

A big question to those of with MS is what causes Primary Fatigue in MS? Primary fatigue is the fatigue caused by the disease itself, compared to secondary fatigue, which has many causes, including medications and mobility impairment.

Fatigue does not correlate with a relapse. Fatigue just is.

There are at least three theories as to why IT is.

1) Is it because of the broken and damaged nerve pathways in the brain? The brain must use a larger area (detours) to get the messages out...and if not taking a detour, the brain works harder...and harder to get the messages through. Multiple and stronger messages use up more energy than just one message.

2) Glucose is used in many parts of our brain as fuel, and if an MS brain has trouble using glucose, it is harder for the brain to be used effectively

3) The immune system is over active - ever present immune activity can cause fatigue.

That is 3 nutshells to digest.

And once again, we have been given homework! Interesting, homework.

I had to make the comment about participants in a FATIGUE workshop getting homework...complaining that they can barely make it through the day, and have had to give up so many things in their lives...

Our homework is to select 2 days, within the next week, and schedule the whole day - in particular the things that we MUST do, and at least three rest periods. We also have to grade our fatigue level in the evening, for the next seven days.

Rest can be something relaxing, it doesn't need to be sleep. But if we experience mental fatigue (oh yes!) then we have to be careful not to "rest" by doing word or number puzzles. I expressed that I have many hobbies, but I can never seem to turn my brain OFF. Even if I am beading, I am thinking ahead to what I'm going to make next, or that I should be sweeping the floor...

Apparently, I have yet to learn how to give myself permission to rest.

And...I have been told this before.

Emily

Day 1 Fatigue Workshop

Today was the first day that I have been in a room with other people living with MS. I realized last night, while preparing for bed, that I had a few butterflies in my stomach, because it would be my first time in such a situation.

And let me say this...it was really good. There are six of us participating in the MS Fatigue workshop. We all hit it off...already talking about meeting for coffee in a different environment.

Verification. Affirmation. Whew.

Of course, while sitting in the one hour and thirty minute session, I made mental notes of things to say here tonight. I'm now having trouble with retrieval.

*This workshop is not a fly by night gathering. I have a participant manual (different from the leaders manual) assembled by/based on a research study conducted by the Department of Occupational Therapy at the University of Illinois-Chicago, and funded by the National Institute of Disability and Rehabilitation Research. The aim of the program is to reduce the impact of fatigue on my life, thus increasing my overall quality of life.

87-90% of people living with MS report experiencing fatigue. Fatigue is also the leading cause of people with MS leaving the workforce.

Our first task (besides moaning about parking options) was to make a list of things that we wish we could do better/or do, but can't/don't because of fatigue. This involved anything from self-care, to community involvement, to leisure activities. We were then encouraged to select 5 of the most important activities, and share at least one of them with everyone.

Sharing encouraged ideas, strategies, and even commiserating. Not only are we in this course to learn from the Occupational Therapist, but we are there to learn from each other.

My list went like this (in no particular order):

*play games with Jason (Scrabble, Cribbage etc)
*go to Curves
*dust & sweep more often
*cook a multi-step dinner
*drive without fear

A couple other examples given were to "work", and "read a book".

More to come!

Emily

I need a break

I have had a busy week. Well, busy by my standards. Even with a little getaway thrown in, I find that I need to rest. Today is the last day that I have something "scheduled", until a haircut, late next week.

Yesterday's appointment was with an Occupational Therapist, for a fatigue assessment. I'll post more about that at another time. On the way home, I realized that I just wanted to do nothing, and we were still expecting company later in the day.

So what is "busy by my standards"?

The week (and a bit) went something like this: pick Jason up from work; grocery shop; shop for 3Penny's B-Day gift; pack for getaway to the lake; play games at the lake; sleep in a strange place; pack to return home; read an entire novel in 3 days; go to Curves; my own B-Day dinner; clothes shop for Jason (see the following event for reason behind this one); attend a family funeral; one hour appointment with OT; visit with friends in town from Calgary; have coffee with neighbours; and tonight...for the last act, video C-Dazzle and Jay's kitty cats.

Throw on top of that, daily living: shower, eat, tidy house, and talk.

Did any one thing push me over the edge? No.

Could I have better planned things? Yes, but that may have involved saying, "No".

Do I need to get over the ever-present guilt of saying "No"? Yes.

Is a good night sleep the solution? No. I'm not tired. I'm fatigued.

My full conversation with Jason involved me saying, "Oh yeah, this is one of the reasons WHY I don't work". Every once in a while, I need a reminder. I also told Jason that I am lucky he understands my fatigue. This doesn't mean that he tucks me into bed while saying, "Don't worry, I'll look after everything". This isn't roses and ice-cream for either of us, and he is tired from work. But he knows that his tired is different from my fatigue.

It does mean that he never acts hard done by, and he doesn't say things that cause me to feel guilty. Sometimes I do need him to get me ready for, and into bed. Sometimes he has to finish the things that I started. And sometimes I need to cry, and that's okay with him.

Emily

now I get it!

I'm hanging out on the couch, surfing through MS blogs. I haven't done this is a long time, and I'm finding it quite entertaining (and helpful). How's this for a t-shirt, "I know I don't look sick, but you should see my MRI's". lmao

The thing is - I'm tired. I'm being stubborn, and not going to bed. Currently, I'm reading threads in a neuro forum (which I found via a blog) and I'm focused on one particular topic, "Downsides of Cog Issues".

Today, and yesterday I have had BAD word selection and word finding. Luckily, most of the time, Jason has known what I'm trying to say. But it is so frustrating! Cog(nitive) issues.

So I'm reading, and I'm thinking...yeah, that's me....I've been really tired today and yesterday...I wonder if that is related to my word selection and finding challenges...OF COURSE IT IS...GO TO BED.

Good night.

Emily

...zombie...

I feel like a zombie...a glassy eyed zombie. This business is getting me down, and I am sure that the crummy weather isn't helping any.

This past weekend, I had a super mini meltdown over my lack of energy and enthusiasm, which is kind of dumb, because a melt down requires energy. I was reminded that I have had a busy few weeks, and this zombie time is to be expected.

Today, out of sheer stubbornness (not to mention a phone call from the gym commenting that they haven't seen me since May 15) I snatched up my gym bag, and drove to the gym. Dumb move. The road to the gym is a long street, with a whack load of stop signs. When I'm glassy eyed, I don't tend to pay attention to street signs, or turn my head both ways to look for other cars.

Anyway, I arrived safely (and I think that everyone else that I left in my wake, also arrived to their destinations safely), only to find the gym closed! Part of me was thankful, because I didn't know what I was going to get out of it, if I had no energy to put in to it...but the other part of me was angry.

Anyway, their hours of operation isn't the point. The point is, I shouldn't drive down residential streets with eyes glazed over. I know enough not to drive down main streets with lots of cars...now I know that no level of driving is safe when I am in zombie mode.

So why am I sitting here...fighting an impending nap?

Emily

stop worrying!

My bottom lip is trembling. Or at least it feels like it is, and it's been this way for two hours. Don't know what it's all about, but I'm also fatigued.

This isn't starting out to be a good day for me. Immediately, I start to think about tomorrow, and whether or not I will be able to walk the 6km. And then I think about my plans for today: dusting, sweeping, beading, general home organization and tidying.

But does any of this really matter?

I snuggle into Jason for a hug (because I get clingy when I'm fighting the fatigue), and I apologize for being useless.

WHAT?!

I hate this feeling.

I need to find the line between personal expectation, acceptance, reality, and "it's ok to be me".

This is not tired. This is not lazy. This is not procrastination.

This is being a person who is hard on herself: to do the right thing, to not make mistakes and to be responsible. This is being a person who cares about pleasing others, making others comfortable, and always putting the best foot and face forward. This is a person who sets it in her mind what would be disappointing for everyone else, and tries her best to avoid it.

This is all of the above with a main course of MS, and related symptoms.

Yes, I said that I decide what would be disappointing for everyone else. Another way to put that, I assume reaction and expectation. I need to stop that. How energy zapping! How defeating! geesh. This is a good rule for everyone: never assume what another will do or say.

Now back to me...

My bottom lip is quivering, someone is standing on my chest, I can't stand in one spot without searching for something to hold on to/lean on...and that is today.

Tomorrow is another day.

Emily

I've been tired

I finally have a moment in which I feel like I can make a somewhat cohesive and worthwhile post. It may sound as if I have been busy, considering that I "finally have a moment", but the truth is quite the opposite. The correct key word in my opening sentence is "cohesive".

I have been zonked. I am starting to have a better time when it comes to falling asleep at night, and it is leading me to sleeping in until 11 AM the next morning! That makes for 10-11 plus hours of sleep. And what's worse is that I am a stubborn person when I am tired. I'm not ornery, just stubborn. I don't allow myself to just lay down. I feel as if I have to accomplish something everyday: load of laundry, unload the dishwasher, sweep the floor. But when I push myself to do things when I am tired, all the other ugly MS symptoms rise from within me. It's a battle that I have with myself, that I am destined to lose.

Lately, it's my memory, in particular word finding and retrieving thoughts, that is suffering the most. Luckily, I only talk to people who understand, and who can read my mind. I also woke up yesterday with a bobble head. Not wobbles, but bobblehead. They are different. A bobble head is just as it sounds (and just like the toy)- my head feels like it is moving updownrightupleftdownrightup etc. Luckily, some Bonamine helped that. Wobbles are more of a whole body sensation.

My other intermittent symptoms have been lazy pinky and ring fingers; an inability to look directly up at something while standing; and eating a meal is pure torture for all involved because it takes me sooooo long.

I have been wanting to mention to you that a couple of weeks ago, Ladyfingers and Dude attended a talk involving a local MS neurologist. For lack of a better word, I was honoured. They took time out of their schedules to learn more about my disease. I understand that they are my parents, and that I have provided them with plenty of information...wanting or not. I didn't ask them to attend, and I can't describe how much it means to me that they did...they even asked questions! They gave me (and I am sure that those in attendance feel the same) a different kind of support.

I'll post again soon!

Emily