fries with that?

Over the past year, the following eating habits have become second nature to me:
regurgitating what I just swallowed, because it didn't go down all the way, or chasing my food with a drink because I need to finish clearing it out of my throat.

The need for the first, thank goodness, has been less of late. I also don't insist on having two full glasses of liquid with me at every meal, so this makes the second situation more manageable right now too. There was a time, when these things happened multiple times per day. Oddly enough, breakfast always comes off without a glitch.

Despite being told that I should avoid breakfast cereal with milk, I can't give it up. In fact, I attribute the milk to the ease of swallowing the cereal, when if fact, I am supposed to avoid liquid and food at the same time. Apparently, liquid trickles down my throat while I'm chewing the accompanying food.

So why am I bringing this up now? Haven't you read about this already?

Well, tonight, I had an incident. And although this could happen to anyone, I immediately attribute it to the swallowing problems that I know I have, because of the MS. Let's just agree on this much, having MS didn't help the situation.

Jason, head down, sitting across from me at the restaurant, didn't know what was going on. All he knew is that he received a shower...of my ice tea, and bits of french fries.

Yes, we were in a public place.

This is what I remember: I reached for my drink, took a sip from the straw (another no-no for me) and realized that the liquid had no where to go. I believe that I grabbed my drink in an effort to wash down the french fries that seemed to be hanging on in my throat. I recall the panic: what can I do with this liquid in my mouth? I need to get rid of the liquid. There isn't anywhere to spit it out...I felt rushed, and panicked.

Then, the liquid and the french fries took on a life of their own, and came shooting out of my mouth. Fierce projection. Shooting particles. Wet. A wide shower of ice tea...all over Jason, and the table. Droplets on my eyeglasses.

I'm still finding bits of french fries and ice tea in the back of my mouth.

Emily

getting used to the idea

Lately, I haven't been feeling anxious about my "purpose". If I think about it, I haven't been antsy for a purpose in well over a month.

Despite still feeling as if I have to complete my at home projects, because "I have to go work tomorrow", I am adjusting to staying home. And how have I done this, you might be asking...I have immersed myself in craft.

Yup, I have replaced my career in home and kitchen design, with beads. Beads, beads, beads. Beaded jewelry has always been a hobby for me, and now, I simply focus on it more. Some days, my fingers don't move in a fashion that I would consider "normal" for me. They feel a bit slow and sloppy. So on those days, I read a book, or take photos of my beaded works.

My beaded world has also opened me up to a lovely bunch of people on-line. One group in particular, of crafty ladies and a man, who are wonderfully supportive, immensely creative, and even funny, are making my new reality a good place to be.

Emily

going green

Before I went berry picking, I never realized how many things we do in a day that use energy. Currently, while energy seems to be a luxury for me, I am being much more selective in my actions so as to "conserve" the much needed energy. I am "going green" for my body.

The trouble is, I can't "store" energy. As much as I would like to think that I can, I can't harbour it in jars and tubes in my basement, and fill up when I feel like it, or even when I really, really need it. I can't sell it. I can't give it away. I can't even count it.

For some time, I thought that if I slept today, I would be good to tackle a project tomorrow. Or, if I nap now, I can stay up late to watch a movie. It doesn't work that way. Energy can be depleted at the snap of a finger. Sometimes it can be restored with a quick nap, or at the very minimum, a shutting off of all stimulus.

That's right, shutting off all stimulus, including the rambling thoughts in my head. No talking. No radio. No books. No lights. Just putting my body in to a "safe" position (ie. NOT the bathtub) and relaxing.

What continues to shock me is what things seem to bring on "tiredness" and even that all out fatigue. Mental work, like blogging or scrolling through web pages, can be quite draining. Carrying one bag of groceries from the car, to the kitchen. I know when these moments are upon me, and if possible, I ask for assistance. I try to avoid being so tired that I crash.

And then there are the things that require energy, that on any ordinary day, you wouldn't think twice about. Eating, which I have mentioned before, requires energy. Taking off clothes and getting in to bed, requires energy. Speaking requires energy. Having a conversation. Brushing my teeth, getting dressed, feeding the cats...

I should mention that I deal with different levels of tiredness, as well as fatigue. A common symptom for people living with MS is fatigue. Fatigue for me, is when I have the all encompassing tiredness: body, mind, and spirit. Fatigue is a whole other bit for a whole other day!

But I will say this, my tiredness, as with my fatigue, is NOT the same since I went berry picking.

Speaking of conserving energy, I need to end this bit due to mental drain.

Emily

nerves

This morning, Ladyfingers asked me if I was getting nervous about my upcoming surgery. jeesh, what is she, my mother...the way she reads my mind like that, and over a telephone line t'boot!

"Yup, I am. That's my next blog post"

Honestly, I intended for this to be the next bit.

I have had two laparoscopic surgeries in the past nine months, and have felt no worse for the wear afterward. What I mean by that is: I don't think that the emotional and physical stress of the surgeries had any affect on my MS symptoms.

Prior to the first surgery, the anesthesiologist wanted me to be aware that I may experience a worsened level of my MS symptoms, following surgery. But when researching the subject, I have read that most people with MS can tolerate standard anesthetic without risk. I wonder if this is the difference between the risk of the drug versus the risk of the physical ordeal?

Either way, I'm a bit nervous. When I had the two other surgeries, I was on Rebif. Now, I'm not. Without the powerful Rebif in my system, I am at greater risk for a relapse.

Searching my closet for my wonder woman bathing suit...

Emily

a new location

Greetings from "Sleepyville", or "Fatigue City".

Need I say more?

Ok, stop twisting my arm. I will say more.

I have been struggling with fatigue. That darn all-encompassing, life sucking fatigue.

I can't stand feeling this way. I am so tired, that I am afraid that if I fall asleep, I'll never wake up. I'm too tired to talk, so I just don't call (or type). My limbs feel as if they are encased in cherry chip cake (I would say cement, but that wouldn't be a good segue for my next complaint). I don't want to eat much because chewing is tiresome, and swallowing can be scary.

But, stubborn me, I push, and I push. And then I wonder why even breathing seems to take too much effort.

And here is another BUT...On a good day, I will credit my "push, push-ness" for my strength, and my ability to handle in a positive way, all of the crap I have been dealt.

Emily

I need to find a new reference

I find that when I speak about happenings, or anything else that can be referenced by a particular time, I say, "before I got sick", or "after I got sick", or "since I got sick". The "sickness" that I am referring to is the darn attack on my brain (not Appy-Gate, but I'm sure that will come) in June 2006. I have felt for some time that I need to stop using the attack as a reference point. I don't need reminders.

"When I got sick" is a poor reference. It's so negative and sad. However, it was a life-altering event...kind of like marriage. hehehehe For myself, it wasn't just a diagnosis of MS, or the solving of years of annoying and sometimes debilitating symptoms. It's as if I was faced with the fork in the road, and I found myself not on the path less taken, but fumbling through the bushes.

So could I change "before I got sick" to, "since I became a wilderness guide"?

Or how about, "since I went berry picking"?

Or, "since I took a wrong turn at the pinata"?

"Got sick" also seems to imply some current state of illness. No, I'm not having one of my, "Maybe I don't have MS" moments, I just don't feel sick.

So what other references have occurred in the past 2 1/2 years...

"Since I started to blog"...

"Since I stopped working"...

Nope. Those won't cut it. The first is too non-specific, and the second is depressing.

"Since I became a kitty-cat masseuse"...

GOT IT!

Thanks for helping me work this out.

Emily