Wednesday, April 30, 2008

Laziness and Tech Anxiety

Due to sheer laziness, I'm expressing myself through the work of others today. Posting news stories and adding a few more MS blogs to my links.

I also have tech anxiety . Hope this $20.00 I'm spending for website advise is worth it.


Was this guy for real thinking LSD would help schizophrenics ? (no disrespect to the dead intended)

Growing a finger !

Eating dirt.
I'll never complain about the cost of food again !

On a lighter note:
Eurovision contest. My post card friends got me hooked on this

Tuesday, April 29, 2008

What worth more: Food , Gas, or Time ?

High Food and Gas prices might be good for your health

I'm a wreck tonight. Decided to pack it in at work and start my leave now ! So I'm off till the end of July. I really wanted to hang in a little longer and make it at least to the end of the week. Can't, can't do it.

When I was leaving this afternoon I found out a bit of news ( can't go into details) that made me think "what goes around, comes around" . Not that I'm vindictive, but some people really do get carried away with a little bit of power and often it blows up in their face.

I'm having gut problems again. Oh joy, another strange tale for the doctor. This is something I've never experienced before and it's awful. What I hate most is it's waking me up during the night.

I've decided to chuck the once a week sleeping pill. I don't think it works anymore and I have a hangover feeling the next day . Well it was fun while it lasted.

Tomorrow I've booked a one hour consultation with the geeks to shape up my website. Hope I'm brain fit for that .

My typing really is getting bad No matter how hard I concentrate I make so many mistakes.
It's like my fingers won't go where I want them to.
So enough for now.

Monday, April 28, 2008

The last week

Today I was space cadet woman instead of zombie woman. The difference being that I can't remember anything for more than 30 seconds. I'm sure I asked my son about his schedule at least 10 times.

Back to work tomorrow to finish my last week before my 3 month leave. Have mixed feelings about it .
Not going to same much about my business venture except: Why don't geeks get it that I have no interest in html code?

Today I turned down a trip to Quebec. This summer it's the 400th anniversary of the founding of Quebec City, with lots of big celebrations planned. I'm not really in the mood for crowds and I get nervous now being out in the heat too long. I'm not really sure I can handle a week with my relatives either. They're not exactly understanding about my MS and I'm tired of being asked the same questions over and over about it. If It was just me and my son that would be great , but not the rest of the gang.

This MS business is a real pain.

Yay! Martial Arts movie night.

Sunday, April 27, 2008

Really should check call display more often

Tonight I made the mistake of telling someone that I was tired. Why, oh why, did I answer the phone when I was zombie woman. I ended up getting lots of free advice like" why don't you take more vitamins" and " have you tried acupuncture ? "
Then I had to hear about Terri Garr, and how she's not in a wheel chair anymore and it's because she has such a positive attitude( translation: I have a lousy attitude) .

I really felt like telling this person to shove off and I'd like to say the same to Terri . Cant' do that.
If I start doing that, I'll end up telling most of the world where to go.

So I'll say it here ( think I have before, repeating myself )

Please all you well meaning folks and celebrities. Please, Please, go away !!
I don't ask you for anything , especially advice.

I'm watching a movie " Don't Knock the Twist" a silly movie, but not that bad. Not any sillier than the people I surround myself with.

And interesting article about disability

Web Success !!

I think my brain was working on the web problems last. When I got up this morning I was determined to figure out how to get that website going. I sat down at the computer, opened up the page, and was able to figure it out. I now at least have a basic website with a few content pages.
Still lots to learn but now I feel encouraged. I know I can do it !

I don't want this blog to become my new business blog since it's really supposed to be my MS diary. What I will do is set up another blog and post a link to it.

So it will be the usual whining about my MS misery around here.

Saturday, April 26, 2008

Web Woes

Blogging to the sound of my son wailing on his new blues harmonica. He sounds pretty good( no I'm not just saying that because you're my son).

It was overcast and windy, with a sprinkling of rain today. Perfect day to work on the website.
Only the website is in a shambles. My fault really, as usual ,I jumped in over enthusiastic , didn't read the directions, and made a mess. Now I have to go back and follow the directions step by step to fix it. I was so annoyed with myself, I nearly ruined dinner . Too busy thinking about what I was going to do, that I left three pans on the stove on high heat. I caught it in time and only slightly burned a bit of the rice.

My friend had to fill in at the last moment for a student orientation at the university, so he still isn't aware of the web woes. Hope to have it fixed before he clues in , not that he knows much about websites .

I've always had a fantasy that my neighbour would be a handyman (not person, man!) Preferable a good looking one . Now I've changed that to wanting a geek next door and not really caring what he would look like. I don't know a single computer nerd or handyman . All the men in my life have always been bohemian artsy types and not at all handy . So I putt along trying to figure it all out myself. My girlfriends are nice, but only good for chatting and shopping.

Now I feel like a wilted leaf of lettuce. Time for another movie !

Friday, April 25, 2008

It Might Just Work Out

Day after day I keep reading in the news about how the economy is headed down the tubes; food and energy costs are set to go through the roof . So what do I do ? I have started a business with a friend.

It's not like I'm wanting to make a ton of money . My plan is that it will be enough to supplement my meager pension, should I decide to take early retirement.

The idea for the business has been kicking around for awhile . Having a regular paycheck makes it easy to procrastinate about these things. Now though, both of us are unhappy with work and uncertain about our futures ( more so me) . Then last night my friend came up with the perfect name for the business and that was it, I decided to go ahead and register a domain name . The start up costs are minimal , so if it doesn't work out it's no great loss. We both of us have the summer off to work on it and see how it goes.

It's great for me because I'll be able to work from home, since most of it will be internet based. Then it won't matter what time I work or don't work . I won't have to worry about how I look or how I feel and if my face starts twitching again, I won't have to worry about anybody seeing it.
Besides that, I really need some kind of project to keep me going.

I know that having a business with a friend could be a disaster. I've seen it happen time after time through dealings with clients in my real job. People have high expectations , big dreams, don't look at the negatives , and it all ends up in tears.

Well I'm willing to take a chance. I don't see things getting better for me at my real job and truthfully, I'm not up to a long drawn out battle with management.
It sure beats my alternative plan , which is to take early retirement and get a job as a greeter at Wal Mart. Yes, I really was considering that.

While I was organizing this thing I decided to see if there was a good movie on Drive In Classics .
What do you know ! "First Men in the Moon" 1964, was on. Haven't seen it since I was a girl.
It was one of my favourite sci fi films, with cool aliens and decent special effects . Seeing it again I found it just as good as when I was 10.

Thursday, April 24, 2008


It really is spring. My tulips are in bloom ! Cooked another barbeque today: Grilled chicken , bake stuffed potatoes, and red peppers.

After being a slug for most of the morning and afternoon I snapped out of it around 5:00 and went for a long walk in the park at Dundurn Castle. My son's prodding helped get me out there.
Thanks son !
Stopped at the grocery store on the way back and bought some lemon gelato for dessert. I really wanted maple walnut ice cream, but it's too early in the season to start loading up on that fattening stuff. Last summer I didn't have my usual shedding of the winter pounds, and I still haven't taken it off. At least my shorts still fit.

My toes have those little twitches that feel like a mild electric current running through them. Not painful, just annoying.

Not much else happening, no health news either,and another day of no good mail. Only bills !

Now I'm going to watch " The Day the Earth Stood Still" and work on my new Games magazine.

Wednesday, April 23, 2008

Psychic Vampirism ?

Another crummy day at work and no good mail either ! At least some new stamps came out today. (Yeah I'm a stamp nerd, as well as a postcard nerd) I'm very discouraged, wondering if I will ever get back on track and start having good days again . It's such a good feeling to come home, make dinner, and have a chat with my son, even if he does talk about politics way too much.

A friend of mine made me laugh today. He read my post about vampires in the office and said it was " psychic vampirism" They aren't sucking my blood , but are draining me via negative energy. It does feel like that sometimes.

The most difficult thing to deal with right now is not knowing what the future holds for me .
I know it's like that for everyone . We have no control over the future. I use to at least feel like I had some limited control over my life. Now It seems that other people : doctors , bosses, relatives, even friends, control me, and I don't know what to do about it. Some intentions toward me are well meaning ( and you know the saying about those) others are just plain bungling and still others are cruel.

I'm having a long mini vacation .Not going back to work now till next Tuesday. Never thought working two days in a row would drain me this much. I get a fever every afternoon.

Did a health quiz and only got 4 out of 8 questions right. How was I supposed to know that more middle age people die in motorcycle accidents than any other age group?
I do now.

Tuesday, April 22, 2008

Vampires at work ?

This is going to be short. I feel like somebody has been smacking me in the back of the head and poking me in the right eye all day. I feel so drained. Could there secretly be a vampire at work sucking my blood ?

My hands and feet are so darn itchy and tingly.

This can't be my life It can't be.
I'm planning another mini vacation for Friday

Monday, April 21, 2008

Easy Gro

Well another mini vacation over. Have the usual back to work anxiety tonight.

Got some good mail today. A friend sent me a pack of old horror movies including " Cult of the Cobra" and " Leech Woman". Got a nice postcard from Australia too.

My backyard and front, are starting to look like something. Not the scary mess they were. Amazing the plants buried under the leaves I had forgotten about .

Never made it to Home Depot, but went to the garden center instead. Bought some "Easy Gro"
perennials; the word easy was very appealing, and the price was right 4 for $10.00 . Now I have to wait a few weeks to plant anything else . We could still have frost, although it's hard to imagine since the weather is so nice now. In Calgary they had 40 cm of snow yesterday!

Even though they aren't bugging me at work, I'm still down about the whole situation there.
I don't want to push my life away, but I'm so looking forward to my break. I forget about the whole mess for a few days and then today started worrying again. I know that's pointless .
Can't help but wonder where I'll be this time next year.

Have tingling toes again this evening.

Monday night, Martial Arts Movie night. Hope it's a good one. I need some cheering up.

Sunday, April 20, 2008

Polite Orders

Another mild day 23C. Made more progress in the backyard which I can't take credit for.
My contribution was to point at things, and give polite orders. I don't care what anybody says, the power of positive thinking, a can do attitude , doesn't always work. Today I couldn't get my body or my mind to do anything. Just the thought of gardening, or going to Home Depot, made me wilt.
I hate it. I hate being on the sidelines. I hate feeling so weak.

I revived a bit in the late afternoon and cooked a barbecue, then I faded again.
Right now I'm not feeling too bad, even though I broke the lid on my favourite tea pot.
That's three things broken these past few days. Perhaps that's the end of it.
Having tummy problems during the night lately, again last night. Not tummy,in the gut, which I will not go into details . I don't have to worry about forgetting to tell the doctor about this
It certainly is memorable.
Maybe I'll get to Home Depot tomorrow The eaves troughs are in serious bad shape.

Saturday, April 19, 2008

Backyard Challenge

Thank goodness the movie wasn't one of those 3 hour deals. I was feeling quite wilted toward the end; couldn't wait to get home. I really am turning into an old fogey, because I can't handle all the mumbo, jumbo, LOTR , stuff in films . Just get on with the fighting, and never mind all the myths and legends.

A warm 24C today. First time I go out this year without a jacket !
Managed to get more work done on the backyard challenge. With the help of my son , the patio stones look almost new again. I poured some bleach on them,while he scrubbed away with a stiff brush to get most of the crud off.
The barbecue is cleaned up and ready to go. Yay it works! I bought a new cover for it that has a green leaf design, so now it looks like this big fake bush.

Not big accomplishments, but certainly an improvement over last year when I was a basket case and couldn't do anything.

Not much MS going on except for the mini tingling spasms in my hands and feet. I also notice I'm talking (writing) about it less. Maybe that's good.
Now I want to check out this how to video. If I figure it out I should be able to attach a sponge on the end of my electric drill, so I can use it as a scrubber.

Hospitals, Stay Away !

Read one woman's tale of hospital misery.

Universal Health Care, Public Education, are they rights ? or privileges ?

I'll be back later. Going out to the movies.

Friday, April 18, 2008

Robot cleaners

Today I ventured out into my scary back yard. Did more tidying , uncovered the air conditioner,
and was going to clean out the barbecue. That last job got put off because, I was waiting for a guy to show up to give me a quote on new eaves troughs. Twice I have been promised he would show up, and twice he hasn't, so too bad for him. I wanted to use someone local, but now I'll just go to the big box store . Have to get a move on before it gets too hot . It was 21C today. If that's a sign of whats to come, I have a feeling I'm going to be spending much of my time indoors this summer. And to think I use to be a sun worshiper !

While I was waiting for this guy I saw an interesting item on TV. The "Scooba" a robot floor cleaner . It's made my the same company that makes "Roomba" the robot vacuum.

The Scooba, is disc shaped , about the size of a large dinner plate, and sits in a docking station to charge up. You fill it with water and cleaning solution , set it, and off it goes, cleaning and drying the floors. It's programmed so won't go on carpet or fall down stairs. If it really works , it's a cool item. My current floor cleaning method is to step on a soaked cloth and push it around the floor.It works pretty good . My hands and knees get too sore to do cleaning the old fashioned way and I really hate mops. Not sure if I want to shell out $200. on a robot though.

I felt like a robot today . So out of it Mindlessly doing chores and paying bills. Now I'm going to play a few of my timed card games (Action Solitaire) to give my mushy brain a work out.

I've heard there's a new martial arts movie opening this week end with Jackie Chan and Jet Li.
If I'm not too much of a wreck, I might go see it. Besides sword fights, I love to watch people get kicked in the face. I think I'm repeating myself again. Oh well.

Thursday, April 17, 2008

Comfortable Shoes

Wore my new comfortable shoes to work today and ended up , as usual, with sore stiff ankles, aching feet, and tingling toes.

Over the years I have purchased dozens of these types of shoes : track shoes, nurse shoes, orthopedic shoes, and boots. I've wasted a small fortune on shoes inserts, store bought and custom made. Worthless ! Yet I can wear high heel sandals and feel fine .

All the surgery I've had on my feet, you think keeping them in nice padded shoes would be good for them, but no, they hurt !

I was born with club foot, my left foot turned inward badly and my right foot a little less so. It wasn't really noticeable until around 2 years of age. The surgeries were gruesome,not anything I want to share, because I don't like grossing people out. The end result is yes, I can walk, although slightly pigeon toed. I have no tendons in my left foot, and scars that are very sensitive. Ahh! poor me (what good is a blog if I can't feel sorry for myself occasionally)

I wore high top, lace up, orthopedic boots for years. Kids naturally made fun, calling me "army boots" ,until I grew and was the tallest kid. Then I told them what I would do with my boots if they didn't shut up !

I know it sounds crazy but I love stiff leather shoes. Maybe I got use to wearing those boots
and soft shoes just don't feel right. I need to feel my feet working, need to know they still work.

So that's my suffering tale for today Not really MS related although I've read that lots of surgery as a child can mess up the immune system .

If you want to read a blog written by doctors that I found really annoying, check it out here .

Now since I've done my evening duties,I'm going to watch a movie.
( you're getting the impression I watch lots of movies aren't you ?)
This one is "Wet Asphalt" from 1958 with Horst Buchholz, about a guy who gets a job with a tabloid ( yellow press back then) and makes up a story. Even when it's revealed to be fake, the story won't go away. Sound familiar ?

Wednesday, April 16, 2008

Return of the Spaz

I think I can safely say that spring is here at last. Today went from frost in the early morning to warm temperatures by the afternoon. It's supposed to go up to 19C tomorrow.
Just hope it doesn't get too hot, too fast. I have a fear of the heat now . The last four summers have been hell.

This week I've been spilling things . A few minutes a go I knocked over a glass of diet coke and smashed the glass. Yesterday I dumped a hot cup of tea on my leg. The day before that it was a glass of water all over the keyboard. I know it's because I'm mega tired and not paying attention to what I'm doing. At least I'm not smashing my hands and feet like I use to do.

I also notice how weak I've become. I carried home two small bags of stuff from the drug store and it felt like a ton ! I was out of breathe by the time I got home, and it's only a 15 minute walk.

Not sure if I like my boss's being nice to me efforts. There's something so phony about it.
Not that he's really doing that much besides big "good mornings" and cheery "hellos" every time he sees me. And he's seems to think I want to know where he is all the time. I can't handle the bi polar behaviour.
Speaking of mental disorders, here's a blog by a woman who was misdiagnosed as schizophrenic and bi polar ! I think being messed around because of my MS is bad . People with mental health issues get treated much, much, worse, and the drugs they get pushed on them are horrible.

Time to go. Have to get my pot roast out of the cooker. Just have to make sure I don't drop it !

Tomorrow, I'm supposed to get another order from Amazon. Yay! More cultural narcotics just in time for my planned long week end ( taking a couple of vacation days) . This time samurai movies. I don't know why I enjoy seeing people get sliced up by swords.

Tuesday, April 15, 2008

Work Update and a Survey

Strange happenings at work today. Seems like the bosses want to be nice to me now.
I'll be doing a new (different) job at the same pay and responsibility level, however much less number crunching and stats to do. I'll be able to do some work at home as well. One boss telling me about a recent article in Family Circle, about MS, that she found so informative. I'll have to check that one out.

Could that be what made them have a change of heart ? Nah ! I think they are very ambitious and don't want this situation to screw up their careers. I was very gracious accepting their apologies even though I wanted to say : "Why didn't you do this from the beginning ?"

Did a survey for this place
General questions about blogging and internet health sites. A PhD student is doing research on internet health services. One question I found interesting :They asked if my doctor recommends a treatment and my network of bloggers says it's not helpful, would I listen to the doctor or the bloggers? I said neither, since I don't seem to be following the mainstream path . I'm skeptical of the doctors, and I find too many MS bloggers are over enthusiastic about drugs I don't think work. Not that I'm putting down anybody down. We all have to choose our own way.

Now I'm dead tired and will indulge in cultural narcotics. Have some movies to watch.

Sunday, April 13, 2008

MS Walk

Here's a few shots from today's MS Walk.
First the ladies of the Scorpions cheer leading squad, of St Mary's Catholic High School.
They were very enthusiastic cheering us walkers on .
Thanks girls ! ( that's me holding up the t shirt)

Next is what I thought was the cutest team of walkers,The Lady Bugs. Didn't get their names,
but maybe they will drop by and say Hello.

The weather turned out to be great , sunshine and cool temperatures. I finished the 8K walk.
I wasn't around for the final tally of funds raised but I will get back with that and perhaps some other walk news. Now phew ! I'm tired . I feel good though.

Saturday, April 12, 2008

Getting Ready for the Walk

I was checking the route for the walk tomorrow and noticed it's the same one as last year, through a very quiet residential area. I remember there wasn't a single person from the neighborhood outside that day, cheering us on . It was so quiet, it was kind of creepy. The walkers were also very quiet. Guess we didn't want to disturb any body's Sunday lie in.

Why aren't we loud and visible ? Sure, I know it's about raising money, but isn't also to raise awareness ? Why can't they block off a busy street for us, like they do for the Santa parade and all the marathons ? I can't help but feel a little disappointed. Is that petty of me ?

The weather looks like it's going to be the same as last year too. Cool and damp. Well I can't control Mother Nature , so I better wear a warm jacket.

Friday, April 11, 2008

Mexican Food and The Sims

A cold rainy day that makes it hard for me to keep my head on straight. In the morning I sat on the couch with my cup of tea, so down in the dumps and Oh so very tired. The combination of fatigue and depression really is too much some days. I decided I may as well get busy, so I cooked a full Mexican meal from scratch. Slapping tortillas around is a pleasant distraction. After much experimentation, I've come up with a good recipe and a good method to roll them out. I stuffed them with beef cooked in a tomatillo and green chili sauce. Preparing those,the rice , all the toppings, and beans, takes about 2 hours .

After that I wasted time playing the Sims 2 . Controlling the lives of pretend people is preferable on a day like today, than dealing with my own life.

Had a chat on the phone with my union rep . She said she's looking into an arrangement where, the insurance company would pay for me to be home 50% of the work week and my employer
would pay when I'm in the office. Not quite sure how that works but I'll let her sort it out. Always good to have options.

After that, I spoke to a friend who's one of those eternal optimists. Wish I could be like that. I'm not very good at the thinking positive method . My way of coping with depression is to just keep going.

Had a bit of a row with my son this morning. I think it's because I worry that I'm going to fall a part before he has a chance to get his life sorted. . At least we don't stay mad at each other for long .
I'm disappointed with a Ninja movie I bought " Shinobi No Mono" or maybe it's because I was too tired to enjoy it. Have to give it a try again another day.

I want to get back to my game now, while I still have a couple of hours to waste.
Haven't read anything interesting in the health news lately.

Thursday, April 10, 2008

It's Even Worse and I Don't Care

I wish I had something else to talk about other than my goofy job situation . Today was a corker.
My boss asked to see me in his office about one of my files. Fool that I am, I went, alone , without my union rep, it was a disaster. Funny thing is, I'm really not upset anymore I have a strong feeling that it's all going to work out in the end . I don't know why I feel this, I just do. Maybe it's because very soon, I'll be away from there for a few months. I have a lot of decisions to make about my life during that time . Naturally it will all be laid out here on my blog.
Which makes me think that even if my blog isn't the best or most interesting ,it's a mini history of my life. My life with MS.

Finally I picked up the walk forms ! The MS Society office is a short walk from my work.
I don't go there very often because it gets me down to see, like today for instance, a young woman in a wheelchair. She had a very cute baby with her. She seemed happy and yet it made me sad.

Tomorrow is a vacation day for me . I'm doing another extra long weekend with Monday off too. I just got another shipment of movies !

The weather forecast for Sunday, walk day, has changed to snow flurries! I knew I shouldn't have put my boots away.

Wednesday, April 9, 2008

Anti Social Fatigue

Today I had the fever fatigue, which I hate. It meant walking out in the middle of an afternoon seminar at work. I was already tired from a "surprise" team lunch. Strange that the bosses think a lunch I have to pay for, at a restaurant I don't like, is a treat. So after all that enforced socializing, I was too burnt out to sit in a room and learn about xp, an operating system I've been using at home for 5 years. I wish I could make them understand that I work better alone at my desk . Understand, that dealing with a crowd of people is exhausting. I'm not intentionally anti social, I'm just very tired.
Nah! they just don't get it . Guess I'll have to leave the explaining to the doctor. Hope he's good at it and can get through to these guys.

Tomorrow I have to go to the MS Society office and pick up my walk registration forms.
I'm told it's going to be a rainy weekend for the walk ! As long as there's no thunder I don't mind walking in the rain.

Tuesday, April 8, 2008

Mini Vacation Over

It's back to the poison machine tomorrow. That's my son's term for where I work, and very fitting. I have a meeting and a training seminar . Yuck ! I find all that difficult to deal with and would prefer to just sit at my desk and work. The whole phony socializing thing is really hard for me to do now. I guess it's because I feel like I should save what precious little energy I have , for important things.

The weather was a surprisingly mild 14C today, so I psyched myself up to do a bit of yard
work . Then, after an early dinner, I psyched myself again to go for a walk. Seems that I do a lot of that these days. I have to talk myself into doing almost everything, otherwise I would most likely curl up in a ball on the couch and watch movies all day. The exercise does help lift my mood, so it's worth the effort.

I did watch 2 Kung Fu movies this morning"Drunken Master" with Jackie Chan and "Dragon vs Vampire " a very strange film with Chinese, Kung Fu vampires. It's hard to get use to getting up in the morning and feeling just as tired as when I went to bed. So it's nice to have a morning were I don't have to do anything but watch movies. A real luxury.
I seem to be having more and more difficulty typing . I make so many mistakes . Thank goodness for spell check.

Busy Watching Kung Fu Movies

From an article in the New York Times by Tara Parker- Pope

"A few years ago the World Health Organization published this anonymous bit of doggerel titled"

“The History of Medicine.”

  • 2000 B.C. – Here, eat this root.
  • A.D. 1000 – That root is heathen. Here, say this prayer.
  • A.D. 1850 – That prayer is superstition. Here, drink this potion.
  • A.D. 1920 – That potion is snake oil. Here, swallow this pill.
  • A.D. 1945 – That pill is ineffective. Here, take this penicillin.
  • A.D. 1955 – Oops . . . bugs mutated. Here, take this tetracycline.
  • 1960-1999 – 39 more “oops.” Here, take this more powerful antibiotic.
  • A.D. 2000 – The bugs have won! Here, eat this root.

Monday, April 7, 2008

The Meaning of Fatigue

Another study excerpt, published in PubMed ,Authors : M. Olsson, J Levell, and S Soderburg.

The Meaning of Fatigue in Women with MS:

"AIM: This paper reports the findings of a study that aimed to elucidate the meaning of fatigue for women with multiple sclerosis (MS). BACKGROUND: Living with chronic illness can involve giving up usual activities. MS is a chronic autoimmune disease of the central nervous system. Fatigue is a common experience among people with MS; however, little is known about the meaning of fatigue experienced by women with this condition. METHOD: Ten women with MS were interviewed about their experience of fatigue. A phenomenological hermeneutic method influenced by Ricoeur was used to interpret the transcribed interviews. FINDINGS: The findings were presented in two major themes with five subthemes; experiencing the body as a barrier and experiencing a different absence. Fatigue seemed to give rise to an experience of being absent and divided into two parts. This also led to a feeling of not being able to participate in the surrounding world. The feeling of being an outsider and lacking the ability as a healthy person is interpreted as a form of suffering. Although the fatigue had a great impact on the women's daily life, the women still hoped for some relief. Fatigue seemed to imply that instead of working as an implement to manage in the world the body has become an enemy of survival. CONCLUSION: This study highlights the importance for nurses of understanding how women with MS experience fatigue, which is a prerequisite for communication based on a shared understanding. This awareness would enhance nurses' opportunities to alleviate suffering. More research is needed to investigate what kinds of interventions can help these women to manage their everyday lives and to maintain a sense of normality despite their fatigue and illness. Such interventions should be subject to empirical evaluation research."

For me the meaning of fatigue is feeling detached from others and from my experiences.
Last week at the concert, I felt like I was on a little island by myself. I was aware of everyone, aware of the music, and yet I didn't feel like I was a part of it .

Fatigue also means that I can't always finish what I start and sometimes can't even start.
While I'm doing things I often feel like a robot, going through the motions, performing tasks because I must, not because I want to.

Fatigue causes anxiety . I worry that my fall will fall apart.

Fatigue means , the old me is gone and won't ever come back.

Sunday, April 6, 2008

Weekend Walks

A quick post here before I settle in to watch a show on History channel, Aftermath : A World Without Humans. I think the world could mange nicely without us.

First I'd like to mention that I wasn't trying to be clever when I referred to date rape drugs. The legal sedatives :GHB, Rohypnol, and Ketamine, are the most commonly used drugs for sexual assaults. The fact that someone told me that a person I know was using a date rape drug, really got my attention, so I'm simply relaying what I heard.

Managed to get a couple of decent walks in this weekend. Yesterday 2 hours around the harbour and I climbed 165 stairs ! I'm not saying it was a breeze. I had to stop a few times climbing up, and the last 20 minutes of walking were a killer . I was wiped out by the time I got home. . I treated myself to a couple of cookies and a nice pot of tea when I got back.

Now I'm certain I can do the MS walk next weekend.

Excerpt from a study published in PubMed Authors M. Olsson, J Levell, and S Soderburg.

"We conducted a qualitative inquiry in order to describe the meaning of women's experiences of living with multiple sclerosis (MS). Multiple sclerosis is a chronic autoimmune disease of the central nervous system. The majority of persons living with MS are women. Living with MS has been described as difficult because of the uncertainty of the illness. Ten women with MS were interviewed and the interviews were analyzed with a phenomenological hermeneutic interpretation. In this study, we suggest that the meaning of living with MS for women can be understood as trying to maintain power and living with an unrecognizable body. The bodies of women with MS serve as hindrances in everyday life. Bodily changes evident to others impose feelings of being met in a different way, which can be understood as an expression of a violated dignity. At the same time, the women with MS struggle to protect their dignity"

Friday, April 4, 2008

Date Rape Drug for Fybro !?

Tonight I'm going to a concert. I'm filling in for someone who can't go because they are taking part in an experiment. Well not an official experiment, more like trying an unconventional treatment,
out of desperation.
This person has fibromyalgia , an illness that is to my understanding related to arthritis.
Pains all over the body, chronic fatigue, numbness, brain fog are some of the symptoms this person experiences.

The doctor thinks that one cause of this illness is a lack of deep sleep, so for an entire year the person will take a drug that is one of the date rape drugs. I don't know which one.
They have to take the drug, go to bed at 10:00 pm, then get up at 2:00 am to take another dose. Supposedly this will knock them out enough to give their body a chance to heal. I'm sure there's more to it, I'm just para phrasing from a second hand account of what's going on.
If I could say who this person is it would be a little less confusing.

I really hope there is some benefit. I know that this same person has been on so many drugs that didn't work or are of limited benefit, at one point taking 9 different medications!
I feel like they are a guinea pig
Do the doctors know what they are doing or are they taking advantage of a very sick person ?

I don't know much about fybro. One of the serious problems with having it, is that many doctors don't believe that it is even a real illness.

I know that it is a miserable rotten deal what ever it is. .

Thursday, April 3, 2008

If I Didn't Know Better

Today I felt like I didn't have MS. No fatigue, no pains no, spasms , no nothing. My mind is still in deficit, but that could just be old age.
How can it be that one day I feel like I'm a corpse, and the next day I feel fine ?
Stating the obvious: Rest is very, very, important . Getting over tired can have a hangover effect that can last for days. Stress and worry makes it even worse. I need to relax .

They were up tight today at work, about me taking my leave earlier, and of course their initial reaction is always to say no. Ah! but then the Human Resources Gods, gave it their blessing, so it's OK.
Only 4 weeks to go , can't wait!!

Now if I can just carry this good feeling into tomorrow ,and the next day, and the next ....

Note** Yes my blog can be very repetitive That's because my memory is shot !

Wednesday, April 2, 2008

Leaving Sooner

The grocery guy just left. It's the best thing having groceries delivered. I can't imagine going back to pushing a cart around at the super market, especially now that they are super centers . It takes about two hours in one of those places to get the shopping done. Do people really need to buy tires and food at the same store ? And those mega carts ! Fill one of those up and it weighs a ton, impossible to push . And the line ups, and the loading, and unloading, and sorting. No thanks.
I even bought shoes online this week They had free shipping , so why not? The shoes fit fine too.
I use to like shopping and I still do. I just can't handle big stores and crowds Too tiring.

Speaking of tiring: Today I was the super, mega, zombie woman, and have only now perked up a bit. Annoying because last night I had a good natural sleep for once. It just doesn't seem possible that I can be that tired . Fatigued , tired, those words really don't describe the feeling at all. It's like every drop of blood has been sucked out of my body.

I've decided to take my 3 months leave sooner, starting in May rather than June. I need to take advantage of the mild weather to work on my backyard and garden, which are a total disaster . I've been too sick the last few summers to give my garden the attention it needs. My son is a pretty good helper, but that poor garden need some TLC. The snow has melted and I can see what a mess it is back there. I'm afraid to go in the yard. If the summer is the way it was last year we will have blazing heat by the time June arrives and gardening will be out.

Besides, I'm so tired and so fed up with the work situation that I don't think I can last another 2 months. I'm down to 23 hours of sick time and I know it's going to get used up pretty quick. I've used more sick time the last 7 months than I have in years. My plan is to come back to work in August and then immediately go on a couple weeks vacation. That will take me into September and by then maybe the stupid ones will have made a decision about my fate.
I hate planning my life out like that, however it seems to be the only way that I can keep going.

So only another 4 weeks left to crawl into that place and then I get a break.

Now since I'm feeling better I'm going to do a bit of cooking. Home made spaghetti sauce and
a pot roast in the slow cooker.

An article in the Star today about a new website . Looks promising . That is if doctors have time for it.

Tuesday, April 1, 2008

No air

Yesterday, during the night I had this strange feeling. I was breathing and yet it felt like there wasn't any air going in my lungs. I'm not congested, don't have a cold or allergies, and it wasn't an asthma attack. I didn't feel any pain or tightness . It lasted for a couple of minutes . This happened a few times during the night. Wonderful ! another thing to keep me awake. I can add it to the list of strange annoying things, that always happen when I'm tired and want so badly to sleep.

I had those jerking motions too, that feel like mini seizures , like an electric shock.
For the last few days when I get really tired in the afternoon I've had that weird fever thing. It bugs me because I keep thinking I'm getting a cold .

This afternoon I packed up my brief case to take to work at home tomorrow. I figure my boss never said directly that I couldn't do it anymore, so until he comes right out and says no, I'm just going to carry on as usual. I don't even care if I get hassled for it on Thursday. I'm so tired, I'm in survival mode now. I only have about 7 weeks to go till I take my summer leave. Don't ask me why something I have been doing for 6 months suddenly is a problem for these guys.
Or why I was allowed for 9 years ! at the other office ,when I wasn't sick .
My bosses don't really have a clue what they're doing and just make up stuff as they go along.
The result being that they are turning me into lifeless rag doll . I can't let them do that.

I have so much anxiety wondering if I'm going to be able to make it through another week, another month. Work at a place for 23 years with no problems and then suddenly everything starts falling apart. There' no good reason for it either . Trying to explain what I'm going through is pointless, they just don't get it.
At least all the stupid forms for Health Canada have been processed. Now I just have to wait for a confirmation letter for an appointment to see one of their doctors . I've been told by others who have gone through it that it's not that big a deal. It may take a couple of months,maybe even longer, which is a drag. I've been dragging around for 4 years now trying to get my life in order. Will it ever be so ?
I guess that's enough complaining for one night. I do it because need to keep track of all this stuff to tell the doctor when I see him.

Still need to get some pledges for the MS walk. Bleck ! I hate my writing style when I'm tired. Things just don't sound the way I want them to.