Walking

Had to write and say I went for a walk. Well, O.K. I was pushed some of the way in the wheelchair where it was uphill, but, I did walk a consideratble distance - for me. Almost two sides of the block.Walked pushing the wheelchair which was pretty good as it bowls along niicely and the weight of it pulls me forward.


Unlike last time I went walking I have not repeated the exercise. So am continuing is in good health. Am taking somthing called NT Factor and it may have been helping.

Floriade

Floriade is a big deal here in Canberra. The flowers are amazing and if the weather is fine, there is something very special about it all. The weather has not been fine. It has been wet and cold, but the tulips still looked beautiful. Took a photo of my wheelchair with the tulips to show that yes I did make it to Floriade this year.



Have moved house. Very exciting. New yard. New cupboards. Very hard to find things. No proper internet yet. Think I should have an extra two weeks off school to recover from the move!! Have gone back to giving personal training a go. First week was a disaster as I felt embarrassed at my own weakness and tried to do too much. Second week better. Rested before and after. It must be hard on a trainer who is used to motivating people for a full half hour to have someone who is happy to give up after 10 minutes. Have no idea whether the exercise is a good idea or not.

Went to Web Standards Group this afternoon. First outing to the National Library with the wheelchair. Managed it mostly. First presentation was by Tom Worthington on "Learning to lower costs and carbon emissions with ICT". Wasn't exactly what I thought. Interesting viewpoint that we should use IT to dematerialise our processes and so save energy. Have been trying to do this, using electronic resources instead of paper for students. Not sure that it has worked as well as I would have liked or expected.

Last Day of School for Term

Really tired but happy. This was a ten week term without any public holidays. I only had one day off sick, I think. The wheelchair has been great. I use it so much. I used it for moderation - found that other teachers could relate to me much better as a disabled person.

Of course, the first place that I went to with my wheelchair was the National Art Gallery. This is a photo of me in the wheelchair looking up at the orb that hangs in front of the art gallery. It is difficult to get it in and out of the boot for me, but am getting better at it, and of course I find that members of the public are willing to lend a hand when I need it.

Lots of people comment on the wheelchair as well, - I don't remember seeing one like it before and apparently most people haven't. Am hoping to go out to Floriade if I can this weekend or maybe next week during the week. Apart from that I hope to have a restful holiday and then there is the mad rush to the end of the year.

I am not as well as I hoped. I am not as sick as I could be. Still hoping.

Got The Wheelchair

I recently got the DVD from the conference run by Invest in ME and it is full of all sorts of intense information about ME. Have listened to the the first three disks - apparently 3 million people in the US have the disease. The discussion by one of the speakers of the Gulf War syndrome and illness was fairly shocking for me. I hope they don't mind me putting up a picture of the DVD.

I got the wheelchair last Wednesday. It was deliverd by courier to school, at lunchtime Wednesday, just in time for me to go and film some of the Rugby Final at Vikings, which we won 38-0 I think. I did not stay for the whole game.

My hubby took me for a "walk" in the wheelchair on Wednesday night. Will have to put a photo in of me in it, as I use it reclining with the elevated leg rests up. Of course what I got it for was for Moderation - had to go to the Lake Tuggers school on Thursday and found it sooo much better to have my own chair that I could relax in.

The Karnofsky Score is commonly used to judge how disabled a person is. It is based on a series of questions, but I cannot find how to score the answers. I usually rate myself at 30-40% which may seem low seeing as how I work full-time. The thing is, I spend 22 of 24 hrs a day lying down - I cannot walk a city block without my walk deterioating to a shuffle, I don't do housework, laundry, shopping, etc. My husband does everything right down to making the bed, vacuuming, all the shopping. Today I made a proper list for him, but most of the time I don't.

Right now I am trying to mark work. The students did a test for me same as last year - written on paper. I picked up the first one to mark on Wednesday and realised that I would not be able to turn all the pages for all the books... too much effort. So I got the students to type it up which makes an electronic copy. Today I am having a really up and down day, and I am struggling to mark - just to make myself do it. I am so tired.

One of the reasons for getting the wheelchair is to allow me to get out. People smile when they see the chair as I almost lying down in it and I have been told it looks very comfortable. When I read the Kanofsky score I am a little confused. Am I the only one who has thought of going out in a reclining wheelchair? Must admit I have never seen anyone else in one. Also sure I work full time - lying down for most of the time. I have a sun lounger in the staff room for when I make it all the way around to the staff common room.

It always occurs to me that I have had 50 years of reasonable health and I feel so sorry for those who are struck down with something like this at a young age.

Finally, found another blog that I like a lot - http://www.squidoo.com/NTFactor
I am thinking of investigating NT Factor more as it was mentioned on the Invest in ME DVD. It was just quickly mentioned so I am not sure what to think.

Anyway, had better get back to marking, sigh ...

The Discipline Required

Think I am finally getting what "the discipline required" really means for me. After I went for the walk mentioned below, I also attempted a walk on the Monday and the Tuesday in the first week of school. By the Wednesday I was a mess. I had to learn that I cannot rush the whole exercise thing. I have found a website which has been very helpful: http://www.oiresource.com/index.htm

The day before I found the above website, I bought a wheelchair. I have to go to various meetings for school and I really needed something to be able to sit comfortably. It is going to be difficult to use, I think, because people will see me pushing the chair and then sitting in it. Probably they will think I am a fraud, but I have to do something. I am hopeful that maybe I can go shopping and go out to things and such like. At present I cannot go out to anything basically, because I need to recline and put my feet up all the time.

Anyway, between the ideas from OIResource and the wheelchair I hope that I can avoid the worst of this illness.

good holiday

We went for a walk today, down to the river and enjoyed it so much. Just a stroll, but still it was fun.

Daughter bought my hubby the first season of NCIS and we have enjoyed watching it over the holidays. Really helps to pass the time when I have to do pre-emptive resting which I have to do. It is the rest you have before you need it. She has a kitten called Jethro - if I can find one, I will put up a picture of him. Also lent us the first season of Life which I did not watch, but it was fun.

I hereby declare that I will stop being stupid and proud and I will sit on the floor when I am well so that I do not get so sick. When I feel well, it is hard to remember how terribly unwell I will feel if I don't be really careful. Also I got my mobility parking sticker over the hols.

We went down to Malua Bay over the holidays - brilliant place. Really beautiful beach. Should put a photo up of it as well..

Back to school tomorrow. Ah well, I have had a good holiday.

Getting Better

Definitely getting better. Have to remind myself to spend time doing nothing, instead of just being so exhausted that I do nothing naturally.

Other day at school I watched "Australian Story" before school started because I was feeling well and yet knew I must pace myself.

Couple of weeks ago we went to a party in Sydney for my nephew's 21st birthday. Was at Sydney Uni and he is an honor student so there were lots of horors students there. One of them told me about a new phone. One of the girls, Ali I think, is working on some Chemistry related to the way the thing works. Watch the video, it is pretty amazing.

Have also just bought myself a new Xacti video camera. It is really good for taking quick videos. Haven't taken any videos outside yet.

Easy Optimization

Have been working on and off for the last week on a flash movie for the school website. Showed it to the powers that be, expecting them to cut it down to 5 photos and they liked all of it - which made things a bit difficult because the file size was so large. There are 28 photos in the movie.

ANYWAY, I sent it off to be uploaded and the lady rang me back and said that the file size was too big and that I needed to optimize my photos. I was a little upset because I have spent hours optimising the photos. I mean I have worked hard at it. Spent hours. So I said as politely as I could that of course I had optimised my photos.

ANYWAY, big problem. Page won't load weighed down with a 1.6mg flash video. Remembered JAlbum - decided to give it a go. THEN.. noticed as I opened the folder of images that one of the images was 1.2 meg. Ouch. Somehow in the heaps of images that I have done, I missed one photo.

JAlbum is the best. I highly recommend it. I choose the folder with my optimised images, and set it to go. It reduced most of the photos again by half (down to around 30k) and the really large one down to about 50k.


http://jalbum.net/ is the link to the JAlbum page. If you have to optimise images, use JAlbum. Honestly it would have saved me HOURS over the last week. It belongs in my "Top 10 useful FREE software list".


This is the school that I teach at.

Better and less better

Haven't posted due to being not so well.

Sometimes I get really depressed. It is so hard when I get a little better - I am suddenly well enough to know what it could be to not be so sick and yet, and yet, it is all still so out of reach.

Had to do parent teacher night and so ended up not well.

I read somewhere and I think it seems to be true for me, that I am much worse in the mornings than I am in the afternoons.

Reason for depression was just plain frustration. I walked all the way over to the new Creative Arts staffroom at college - wow it must be a couple of hundred meters, - sat down in a chair (instead of on the floor) when I got there, and then walked back. Admittedly it was after a full day at school. Then I helped a student for a while and did not sit in my good chair. End result - very low... just no energy when I got to school this morning. I was crying and Sylvia the lab assistant caught up to me as I was walking in to the staffroom like a person with cerebral palsy. She said I should have stayed home. but - I cry from frustration. I don't want to walk like that. I DON"T WANT TO HAVE TO PAY SOOO MUCH for expending a little extra energy the day before. ( I was at school from before 7.40 am to almost 5pm so it was a long day).

It is late now.


Got a funny message on my phone. Apparently they were testing my Dad's new phone, and they rang me up and left a message, just to make sure that the new phone worked!

By the way. Did you know? Shift Happens.

(love the music)

trying to mark

Am sitting in bed with my laptop table, trying to mark my advanced web group projects. Started on the first one and haven't even got it done yet. I love it when some student finds something new to include in their work, something I haven't see before.

Well, the first one used a CSS attribute 'filter' for an image with the value of 'light'.

So went looking for it, covered all the normal sites. Couldn't find it and then came across this brilliant site.

Just had to borrow some of it. Don't think this work in FF but it should work in IE.
Blur Filter

The writing should be blurred if it worked.

Am so tired, can't hardly keep my eyes open.






.

First Day Back

First day back at school today. Not too bad. Was O.K. all day, but very tired when I got home. Had a sleep.

Watched "Two Towers" for a while cheered me up a bit. Not that I was sad, just really tired.

Excellent energy levels most of the day. Got up early and out of bed from 6.30am to 5.30 pm.

Still I am lying down at school all day.. in my wonderful chair.

Raised my voice at a student today, apologized about a dozen times because it was so unnecessary. Something has put an edge to my temper, not sure what it is...

Yes I know that that's another side effect of M.E. - how convenient to blame everything on the M.E. ... or maybe I was just a bit strung out cause I had been on my feet for some minutes when it happened.

Oh well, had better get on with marking the group projects. Here are some peaceful ducks - my son took the picture.

Not a bad day

Just said to husband, "Well I didn't feel too bad today, all day".

Have to record that. Was out of bed for several hours. Watched the movie "Falling Down" again. Can't remember where he says the words but it is such a sad and desperate story...

BTW my o key isn't working prperly so every 6th o or s it just doesn't work. Means I have to do a lt f retyping - see it just didn't work twice in a row!!.

Will have to lift it and see what is wrong.

So nice to have a day, not a bad day...

ANZAC DAY

It is ANZAC Day and of course I did not go to any service. Not because I don't care, but two things, - it is too hard to find somewhere to sit/lie without suffering gross embarrassment and I would cry.

I always cry at ANZAC services. My father fought in the Second World War and still proudly marches, although he is 87 this year so I don't know if he did march or not. His father fought in the First World War and was gassed. Years ago I found the Wilfred Owen Poem Dulce et Decorum Est and I thought of my grandfather. Apparently he came back from the War much changed. I never knew my grandfather of course. He died in London in the Second World War more than ten years before I was born.

I cry because I feel the hopes and the fears of the young people marching bravely off to war and of those watching the march. Unlike those standing there that day, we know how it ended. We know that so many of them died or were changed forever in ways that made them distant damaged people. Yet I have known the stories of so many who lived lives believing that it was what they had to do so that we could be safe. It was a cost that had to be paid.

My Dad is a warm loving person. And I miss him a lot. He is in Queensland and I am in Canberra. Here is a photo of him getting ready for the march, 1995.

Just in case you were wondering ..

The statistics for ME recovery is
about 5-10% recover
between 40-60% get somewhat better
between 40-60% get worse
about 5% can end up paralyzed, bed-ridden and totally dependent on others.

Some die.


Thats why I was worried about being sick.

I get really scared.

I think that is why I am writing this blog. Because I am so scared.

Myalgic Encephalomyelitis

Friday, 24th April, 2009 4.20pm

Found a nice short definition of what is wrong with me.

Myalgic Encephalomyelitis (ME) is a chronic, inflammatory, primarily neurological disease that affects the central nervous system, the immune system, the cardiovascular system, the endocrinological system and muscoskeletal system. It can cause a wide variety of symptoms, including changes in sensory tolerance, visual problems, exertional muscle weakness, difficulties with co-ordination and speech, severe fatigue, cognitive impairment, problems with balance, subnormal or poor body temperature control and pain.

Found this definition on
http://170650.aceboard.net/170650-2169-11091-0-Sufferers-Rely-Alternative-Medicines.htm

Also recent research Chronic Fatigue Syndrome and Mitochondrial Dysfunction http://www.ijcem.com/files/IJCEM812001.pdf.

If your read the website it comes from http://www.drmyhill.co.uk/article.cfm?id=381 it is an amazing story.

Bad Day Yesterday

Went to school - it is standown at present which means there are no students. I wanted to do some marking using two computers. I can't run CS3 on my laptop so had to go to school to mark.

Plus, the school bought me this really great chair which I can almost lay down in - the seat is like 45degrees to the horizontal and it has a big back so I work in comfort, using very little energy.

I have the 2D Animations on one computer and my marking sheet (in Word) on another. I have been using formulas in Word for a few years, but didn't realise (der) that you can do cell references.

This is how I teach, - almost lying down. I have my feet up on another chair. Seems very unprofessional I suppose, but I have a brain, and on most days I have enough energy to walk around the room and I also constantly interact with the students.

I also have good classes.

I teach using wikispaces.
Flash and the Web
Advanced Web and Scripting
Communications and Presenations are my current classes. These sites are under construction constantly. I have used most of the standown period to work on them and do marking.

So why am I writing this today? Well, yesterday a scary thing happened. I went to school, I did my marking. I got cold. The airconditioning is always a little weird during the holidays and I was hot so I took off my jacket. And lay there for hours, and got cold.

Came home, had a fever. To you - no scary. To me - terrifying. I don't want to get worse. I am so glad I can get out of the house and teach. I want to keep my life. It may be fairly bad at times - I can't go to so many things I would like to, there are lots of things I can't do - but I like my life, I don't want to get worse. People do get worse with this stuff.

So, today I am back in bed, with my table, working on my wikis - and investigating Second Life. Not that I want to join it but it interests me as a gaming phenomena. Some really cute IT happening.

Check out


Anyway, why does one blog? I guess I want to remember this.

Since I am in Australia, this was posted at 12.30 on the 24th April. One day before ANZAC Day - I forgot to edit the time when I posted.

Beginning

I can't believe that I am doing this. But I have realised that as I am is how I am going to be, if I don't get worse. I might get better. But when I do have good days I HAVE TO REMEMBER that there are really bad days. Don't waste the good days.

I had an excellent day last Saturday. I am almost crying when I remember. I didn't feel good or anything. I just didn't feel bad and I could walk normally. We walked around the block. First time I have done that in months. Even Sunday I still felt O.K.

Went to a PD on asp and .NET on Monday. Couldn't walk properly. Felt stupid. Had to rest. Spent Tuesday in bed. Today is Wednesday. Went to school and did some marking for about 5 hours. Came home and rested.

Maybe someone else will read this, or maybe not. If anyone does, they will notice that I rest a lot. I have to do that. I have myalgic encephamylitis. Not sure if I spelt that right.

I teach full time, and the rest of the time I rest.

I teach IT.

Today I saw a great video which I am going to use in my presentation class.