Thursday, January 31, 2008

Forms, work , and money

Finally got my forms filled out and signed by the doctor. It only took 4 visits !!
One thing I have learned over the years, people are very reluctant to sign their name to anything. Not that I blame them. It's sad that we have to be so careful and can't trust anyone.

What I don't understand about work : Do they really think that a person can go to work everyday for 30-35 years and never, ever, have any problems or illness ? Maybe some workers are lucky. Maybe they do exactly that , go along in a perfectly straight line .
My line is very crooked these days. I would love for it to straighten out

Read another story today in the New York Times about a Big Pharma company that is willing to pay a billion dollar fine ! Nice to be able to buy away your problems .

Wednesday, January 30, 2008

Medical stuff

Good story in the New York Times today " Financial Ties are Cited as Issue in Spine Study"
About doctors who have investments in medical companies and also do research for them.
Also mentions how negative clinical trials are suppressed, or altered to give them a positive spin .

Learned about "Alexithymia" : the inability to express emotions with words. I read a research abstract about it and it's relation to fatigue in MS. I suppose when you are fatigued in that unique MS way it might be difficult to express what you're feeling. For me it's the opposite. I express my emotions too much .
Dis inhibition: Yeah that's me. Get too angry , too sad, and other things I'm embarrassed to mention even in my own blog . Imagine that .

* Beware : lots of complaining in this post*

Early blogging today. Had a hassle at the doctor's office all because of a form that I needed filled out. This is a clinic where I sort of have a family doctor. What I mean is you can't make an appointment at this clinic and you see which ever doctor is available. I go on the days I know this one doctor I like is there. I have seen him a few times and he is the original doctor who sent me for an MRI and referred me to the neurologist.

This doctor is reluctant to sign the form , insisting it was a legal form , which it isn't . Said my neurologist should do it. I tell him I no longer see the neurologist and have been referred to the MS clinic . I don't have an appointment there till June so can he please sign this form for work ?
It's to get things going for my approval to work at home. I can tell by the look on his face he doesn't believe me, although why I don't know. He keeps repeating over and over that the neurologist should do it.

He calls up the hospital where the neurologist works , only to find out he doesn't work there anymore and they can't find my file. They think it was sent to the MS clinic. He starts filling out the form and then changes his mind again . He looks through his own files and finds one for me.

In it is a letter , sent by the now disappeared neurologist to the doctor at the MS clinic. In the letter he states the only reason I am being referred is that I refused to have a lumbar
puncture (spinal tap) . It also says he's unable to reach a diagnosis of MS for me. That is odd as he and a couple of other doctors said I did and he gave me all these drugs for it!

I did refuse the test because this neurologist( who's specialty is strokes) kept sending me for endless tests and prescribed several medications . What was he treating me for? He kept putting off referring me to the MS clinic because he said they are picky and it takes a year to get an appointment. I find out later it isn't true . I said if he had done it a year ago ( I've been dragging around now for 3 years) I'd be at the clinic now instead of wasting time with him . I said if the doctor at the MS clinic wants more tests done then I'll do it, otherwise, I'm through. No more doctors, no more nothing . Then acting like he's doing me a big favour he says he will talk to the head of the MS clinic when he sees him at a conference on the weekend. Next thing you know I have an appointment. Now he's gone and who knows what would have happened if I hadn't insisted he do something. It's not like I'm asking for anything special. I need to be referred to an MS specialist, so refer me already !

Back to the form doctor. He's busy rummaging through my file looking really confused. After a few minutes he says he'll try and do something for me and I should come back tomorrow.
Then he suggests that maybe I should consider quitting work !!!! Yeah, well doctor, I'm trying to make arrangements to work from home. My boss is willing,but you won't even fill out a dumb form so that my boss can at least look into the possibility . So I can just imagine if I needed documentation from you or that other doctor to go on disability,which I don't want to do anyway,so there. So please either fill out the form or let go.

We'll see what happens tomorrow. !

Tuesday, January 29, 2008


Tonight I was so disappointed to read about the Montel Williams MS Gala and Celebrity Poker Challenge to be held March 13, 2008. Why ? The gala honouree is Bill Tauzin CEO of phRMA.
I hate Big Pharma to me they are the worst drug pushers of all ! Mainly because of their push to sell psychoactive drugs to treat mood and psychiatric disorders. They inflate the numbers on how many people have mental illnesses that require drug treatment. For example the explosion in the diagnosis of bi polar disorder in children. There are children who take as many as 10 different drugs every day ! They also make exaggerated claims about the effectiveness of certain drugs and suppress any negative studies on these drugs .

I could go on and on about prescription drugs !!!!

I 'm also disgusted that the cheapest ticket to this fund raiser is $1000.00 and that it features gambling as a fund raising tool.
Montel, I'm disappointed in you
Two interesting articles in the Toronto Star today "Dangerous Devotion to Doctor's" about how we should perhaps question doctor's expert opinions and " Desperate for Sleep " . This article was very interesting to me, as I did not know how little medication over what you should take can result in death. One pill more can put you over the edge.

Reading more MS blogs. Lots of good ones, although some kind of bug me. I don't post comments when I disagree because everyone has the right to their opinion and that's what blogs are for! Express yourself ! It's very therapeutic. Having said that ( critic time) I really don't agree with the "It's All Relative" point of view . I'm supposed to feel better because even though I'm tired and dizzy some other guy in say, Pakistan, who has MS , also is homeless due to a mud slide, and lost his family. No I can't feed off the misery of others to give myself a boost. My mother will say things like that to me "Oh things could be worse, you could be blind or have no job" Yeah Mom, I could be the Queen of England too, but I'm not, so if I feel like moaning I will.

If I think about what my philosophy is I would have to call it " Just Keep Going " .

Yeah I get really depressed, but there's laundry to do, so I do it. Yeah I'm tired but I want to write, so I do it. My leg hurts, but I want go for a walk, so I go.
If I sit around my leg will still hurt, I'll still be tired, and I'll still be depressed. Every day I have to talk myself into doing just about everything. I don't no any other way to be. I just keep going.

I remember reading in the paper an interview with a celebrity who was discussing depression. Can't recall who it was. He said he was so depressed he sat and stared out the window for days on end. Well I guess if you have a house keeper , a butler, and lots of money you can indulge yourself that way. I'm poor I don't have anyone to clean up after me. Wasting time is a luxury I can't afford.
Do I sound harsh ? Maybe I am . I think people rely too much on pills and doctors to fix them.
You need to fix yourself.

Monday, January 28, 2008

dizzy day

A dizzy day. I keep having this feeling that the floor is giving out underneath me. Wednesday I have an appointment with the doctor to get forms filled out for my medical accommodation .
4 pages of questions and it's going to cost me $80 ! I'll get reimbursed but I don't even care about that ,I just want it over and done.

What's driving me crazy is I never know if what I'm feeling has to do with the MS or something else. I read and article that a very small percentage of MS' ers have fits of uncontrollable laughter or can experience a state of euphoria . That doesn't sound so bad to me . I guess it would be awful if it happened at an inappropriate moment , like at a funeral. I'm not trying to be clever. It really would be awful .
Tomorrow there's going to be an article in the Toronto Star about the dangers sleeping pills and tranquilizers. Look forward to reading that ,me being such an anti drug person.

Sunday, January 27, 2008

A short post tonight. I spent most of the afternoon writing. I'm working on a short story. Even though it's tiring, writing is something I can do and enjoy without worrying about my concentration or memory. Not like a file I work on in the office which which uses up those things pretty quick and leaves me exhausted. . Which is why I hope this situation at work gets sorted out quickly. Going into the office every day is a killer. They don't want "sick" people around and they don't want to deal with it.
Do they really think people can work for 30 years straight and never, ever,have any problems ?
I have to try and think positive and hope it all works out.

A good day today . Just a few mild dizzy spells . I went out for a walk and didn't have any pain in my leg or foot .
No new MS facts to report . It's Sunday .I can take a break from learning.

Saturday, January 26, 2008

Ahhh what a day. So tired , messed up mentally and physically. I forced myself to go for a walk this morning at least . Just a short one, about 30 minutes, better than nothing. Spent most of the day "putting" as my son calls it. That means cooking, reading, doing postcard stuff and email. I just couldn't psyche myself up to do any laundry. I felt so tired and thought I might fall down the basement stairs. It would be nice to live in a one floor house with the laundry room in the kitchen. A girl can dream !
I did make a very good Mexican dinner. I find cooking improves my mood and is very relaxing . I guess I'm lucky that I'm a good cook . Don't have to think too much about doing it. Still though I did feel like I was dragging myself around most of the day .

Another MS fact: Between 1941 and 2006 there have been 23 films made dealing with the subject of MS. According to a study of these films most of the depictions of MS have been very realistic. I can't think of one movie about MS or having a person in it with MS. I do remember an episode of Family Guy (my son likes it, not me) where one of the characters , had MS. He was using crutches to walk but otherwise looked and sounded good, considering he was a cartoon character. The only other times I have seen anything about MS is on the Montel Williams show and news about Mitt Romney's wife.

I was rereading portions of Montel Williams book" Climbing Higher" it's about his MS experience. What I like about him is he doesn't sugar coat anything and yet he is very hopeful .
He has a very good MS website .
The section I was rereading is the interview with different MS doctors . Asking them questions about treatment , diagnosis, future of research etc. One doctor from Sweden made a very good point about how important a holistic approach is to treating MS. A patient may need a team of people helping them to stay well . He emphasized the importance of physio therapy , exercise (moderate, nothing heavy duty) counseling and regular follow up. He seemed to place the least emphasis on drug treatment , although he was in favour of using drugs. Wish he was my doctor.
Who knows maybe the guy I'm going to see in June will be like him.
I did say I was going to talk about dis- inhibition today. It's too close to me, I need more time.
I never thought too much about the mental /emotional symptoms of MS before. Too busy dealing with the fatigue and the aches and pains. Now I think I need to face that part of it since it really seems to be affecting me more than I want to admit.

Friday, January 25, 2008

MS research

This evening I've been taking a look at abstracts of articles about MS. There are hundreds of them. I was reading mostly about medical research. Some very practical about clinical trials for drugs, others a bit odd, ( at least to me) such as :

"Multiple sclerosis in women having children by multiple partners. A population-based study in Denmark.". Conclusion is there's no increased risk of MS if you have children with multiple partners. Not sure why anyone would study this or how they came up with the idea in the first place. I'm sure they have their reasons and who knows, it might lead to something worthwhile.

I also found out that you are at no increased risk of dieing in a traffic accident if you have MS but you are at higher risk of death from suffocation or burns ! Better practice my Heimlich, and avoid playing with matches.

After that I looked at images of the brain for the purpose of trying to understand my 2 MRI 's. The different parts of the brain and what they control . Stumbled across some MRI scans and it seems I have a classic presentation of lesions .

I'm sure many people would think that by doing this I'm dwelling too much on my condition . In fact it's the opposite . It's making me feel better. The more I know ,the more in control I feel, the more able I am to come to terms with MS.

It also helps to know that there are many options to treat MS besides drugs. I'm not talking about herbal remedies or vitamins, anything like that. I mean massage, physio therapy, exercise programs , practical things that can improve quality of life.
Tomorrow I'm going to tackle a subject I am, having a hard time dealing with. Emotional response and poor judgment.

Thursday, January 24, 2008

A quick update . Today I was approved to work at home . All this time trying to get a medical accommodation and now it's finally happening. Can't really go into details except to say that sometimes good can come from bad. Now I'll be able to carry on working longer .
Won't have to worry if I have a dizzy spell or a memory blank out. I can make a cup of tea and sit on the couch for awhile before I get back to business .Won't have to worry so much about how I look and won't have to do all that exhausting socializing.
I'm still planning to retire in 2 years but today, truly, I was considering taking a serious financial hit and packing it in for good. I have to thank a union rep.( first time I've ever had to use one) who talked me out of it and got things moving . She actually knew something about MS ! Not that I expect anyone to know about it I sure didn't know anything when I was diagnosed Still it does make things easier when you don't have to explain it all over again. ( for the hundreth time)
It means a move to a different job which is OK . One I have done before although that was over 10 years ago. Maybe it will be like riding a bicycle .They are much more open to different work arrangements than where I am now so it's worth a shot.
I have the day off tomorrow Hooray !

Next week should be interesting. Nothing new to say about MS tonight except that there are times when I wish I did look "sick". I get very tired of hearing how good I look. Maybe I read too much into it.

Wednesday, January 23, 2008

Couldn't post yesterday due to a wonky internet connection I was too tired to deal with.
Went to a retirement dinner in Toronto last night for a former boss. Amazing how good looking the retirees are and how happy too. It's got me thinking Even though my plans are to retire in 2 years ,the way I'm feeling these days I might go sooner. Work is getting harder . I'm so tired all the time . My concentration is less and memory worse. Even working at home the last 2 days isn't having the restful effect it use to. Time to go ? Tomorrow I'm going to seriously review the options . Either I make a decision or I just shut up and keep working.

I was all weepy eyed when I left the dinner. Everybody was so nice to me . All the hugging and kissing and How are you's ? It really was a good group to work with but things change and we have no choice but to move on. I don't regret getting a transfer to an office closer to home even though I'm having difficulty adjusting. All those years in one place and then having to get use to new people, new building, new ways of doing things , new routine. If I was in good health it would be a breeze.

More things I have learned about MS: The longer a woman is pregnant during the winter the more likely the baby is to develop MS. More people born in May have MS than those born in November. Researchers believe this is due to lack of sunshine.
Pregnancy halts MS progression and even helps repair the brain.
MS is a northern illness and almost unheard of in equatorial countries.

Reading about the untimely death of Heath Ledger Notice that there are more deaths from prescription drugs than illegal ones .

Monday, January 21, 2008

The floor is moving !

Not a good day. I had decided not to go to work this morning then changed my mind. It is bitter cold outside. I thought the walk would wake me up. I got to the office feeling so tired and out of it.
I asked my boss if I could work at home on Tuesday and he agreed. I knew if he had said no I most likely would have called in sick. Sometimes the effort to get there in the morning is just too much.

There was a meeting planned for 10:30 to tour the new area we'll be moving to next week. I went out for a break to the post office around 9:00, when I got back I had already decided I would go home once the tour was over. We were in a group and went up to the 5th floor. I was feeling a bit funny. When we got off the elevator I starting walking with the group to the entrance. Suddenly I felt like the floor was moving under me. I tried to ignore it and then it happened again . I leaned on the wall with my arms up trying to hold on I felt so strange, not dizzy , not like a fainting spell either. I held on and then I felt like everyone and everything had disappeared around me . I heard myself moaning but like it was someone else doing it I heard my boss say something and another person got me a chair I sat there holding my head . I felt feverish and odd. After a few minutes I asked if I could go back to my desk. My boss brought me back and I just sat there stunned. Crying a little, my eyes were all blurry and my head hurt .

After about a half hour , I had recovered enough to go home . My boss didn't offer to call me a cab and didn't seem to care what I did. When I was leaving he said he thought the job was getting to me. I said it didn't have anything to do with it. He disagreed and that was it,I left. When I got home(it's a ten minute walk) I called him just so that he would know I was OK . He didn't seem to care . He really should have been the one calling me and he should never have let me leave without making sure I was all right. What ever, the guy is so overwhelmed by his job I think he's totally unaware of what's going on around him. Lucky for him I made it home safe, otherwise he would have been in serious trouble . I don't care. I was feeling so lousy I just wanted to go.
When I got home I made some tea and crashed on the couch, I watched a movie "The Raven"
I was feverish and right out of it. Now I feel drained , exhausted. I haven't done much all day except a bit of reading and checking email and regular mail.

I think part of my problem is I don't get proper sleep. But how can I sleep when out of nowhere I get stabbing pains in my feet and my leg hurts and then the pains just go away.By then I can't fall back asleep and before you know it it's time to get up. I can't take sleeping pills during the week because they leave me feeling too groggy in the morning. If only I could and if only they weren't addictive. Will they ever come up with a drug that just does what it's supposed to do and not mess me up some other way ?

I also notice the extreme cold affects me almost as badly as extreme heat. Oh! to be able to stay inside and write or do my postcards and not have to worry about going out in the world .
Nah I'm too young to be a hermit.

It's good I'm writing all this down so I can tell the doctor when he asks .
Tonight I watched a t.v. show about lobotomy and how they thought it was a miracle operation in the 1940's and 50's. Didn't even bother to ask people if they wanted one. They just did it.
20 years later they realized that it destroyed people's minds. I wonder if we will find out in 20 years from now that all these miracle drugs we have do the same thing ?

Sunday, January 20, 2008

Sunday night and I'm relaxing with a nice cup of chocolate Chai tea. Only had one slump today
in the late afternoon . Otherwise a pretty good day, no pains and only a couple of mild spasms.
No emotional extremes either, although that might have to do with minimal contact with others this weekend due to the bitter cold. Today would have been a good day to go for a walk in order to soak up some sunshine. I'm more and more convinced MS is caused by a lack of sun, although I'm sure there's more to it that that. When it's this cold out I have no interest in walking or doing much of anything outdoors.
I've been reading more MS blogs . I'm learning about treatments for MS from them . The good and the bad experiences of others. . The more information I have the easier it will be to decide what's the right direction for me as far as treatment. Oh! there's so much discussion out there about what is and isn't a good drug. I do agree with one blogger who says most of the drugs aren't specifically for MS. I know the ones I've been prescribed ( and don't use) are primarily treatments for other illness like Parkinson's . I guess the doctor's think if some of the symptoms are the same then the same drug will help. I'm not sure I agree. Yeah I'm anti drugs for many reasons.

Not looking forward to going out in the cold tomorrow morning . I hope tomorrow will be an uneventful day at work with no memory or concentration troubles.

Saturday, January 19, 2008

Cymbalta research results

Did some research on the drug Cymbalta (duloxetine). This is a drug used to treat major depression. I don't have major depression . Sure I'm depressed ,most people with MS are , especially when I first found out. I didn't even know what MS was. I confused it with Muscular Dystrophy and thought " that's it my life is over". In fact when I had trembling in my baby fingers that was around the time that Michael J. Fox made it public that he had Parkinson's . He said it started with trembling in his baby fingers. I was convinced I had the beginnings of Parkinson's and did the smart thing : ignored my symptoms .
Now 3 years later and I'm diagnosed with MS. Depressed ? sure. Feeling hopeless ? NO ! OK maybe sometimes ,but I get over it pretty quick.

Have I lost interest in activities or friends and family ? Yes to my family, because they annoy me with their unhelpful comments ( more about that another time) , except for my son, he's the best. Yes, to a degree with friends. That's mainly because I'm too tired after work to do any big socializing. That's were the phone and email come in handy .
No, to activities. I have my postcard club , this blog, writing, cooking , walking, doing puzzles, playing cards, watching movies . The only thing I do much less of is house renovations . I feel too weak to tackle any big house projects. I also neglect my garden in summer . I can't handle the sun and heat.

Do I have trouble sleeping ? Sure, when I have weird pains or twitching or muscle spasms or that crazy numb feeling in my forehead.

Change in appetite ? Well right now I'm dieting. Suicidal ? NO, I think suicide doesn't prove or change anything (more about that another time).

And I still take an interest in my appearance , which when you're 53 ,takes lots of time !!!

In other words no major depression worth treating with a drug like Cymbalta. It doesn't have any serious side effects, well at least when you're taking it it doesn't . Trying to get off if , that's another story. Serious, serious, withdrawal symptoms.

So thank you to the lady who suggested it. I hope she's doing well on that drug. Me I prefer to take a different route in trying to manage my emotional outbursts. Not that my way is better. It's just different. I'll write about that another time. This blog isn't going anywhere and neither am I .

MS Drug

Decided to blog earlier today due to a message I received from a member at the Montel Williams MS site. I had posted a message there last week asking if anyone experienced emotional extremes. I 'm having difficulty controlling my anger . I had two major flip outs during the Christmas holidays. Not that I'm normally calm and collected. I admit it's easy for me to express my emotions. Sure I yell, I cry, but now it's much more intense and lasts too long. When I cry, I really cry ! I can go on for ages , which I hate because I end up with a headache and puffy eyes. These outburst aren't related to any serious problems with anyone . Thinking about it now I believe it has to do with fear. Fear and yes, denial. I'm still in denial about MS. Fear that I will lose my independence . Can I really trust the ones I love to stand by me? or take care of me ?
Is it fair to them. It's not their fault I have this crummy illness. Why should they be burdened .
Fear they will stop loving me. So what do I do ? Fight with the only people in the world I care about? Yeah, that really makes things better. What an idiot I am. I don't seem to be able to control it though. That's why I asked if anyone else has experienced this.

I had a response today . This woman described what she has been through. Not at all fun.
MS affects people in so many ways and each person has their own unique trials with it.
She suggested I try a drug called Cymbalta. I'm going to do some research about it now and maybe make some comments later . I'll try to keep an open mind . I admit to an anti drug bias. Anyway I Thanked her for the suggestion. I've never heard of this stuff before. More later.

Friday, January 18, 2008

A very cold Friday. Left work early today. I knew it was time to go home when I goofed up one of my files and then couldn't remember what I wanted to do with it. I also had that strange numb feeling on the left side of my forehead. The walk home in the cold revived me a bit although not for long. It's a typical dead beat Friday evening for me.
I checked out a few MS blogs and now I'm so annoyed that I forgot to bookmark one that had some very good links. I can't remember what it was called either. Interesting reading so far.

So many people taking drugs for their MS. I'm very reluctant to start any drug treatment of any kind. The first appointment I had with the neurologist and I was amazed that after only talking to me for about 10 minutes he was ready to dish out all kinds of drugs . Allertec, Amantadine, anti depressants and sleeping pills. Wow ! You mean I'm supposed to take all of these? All addictive and all have side effects. Oh I don't care what drug it is they all have side effects. And how long am I supposed to go on taking all this stuff ? A year?, ten years ?,twenty ? I know anti depressants don't work. I could fill several page with data to support this belief. Including a recent article in the New York Times, that said drug companies have suppressed reports that suggest most don't work or are very short term. And I'm not depressed.He was prescribing them to counter act the effects of the Allertec! It keeps you alert but you don't want to be too alert I guess!

I like sleeping pills but I only use them once or twice a week. The reason? They are highly addictive and over time you have to keep increasing the dose. Wonderful! Besides,that odd metallic taste they leave in my mouth tells me they can't be good for my digestive system.

I admit they are very tempting .That wonderful oblivion when my mind shuts off and my body relaxes. Lovely.
Think I'll try and see if I can find that blog again.

Thursday, January 17, 2008

fatigue diary

Very very tired this evening. Today I started my fatigue diary, which I picked up at the MS society. Every hour from the time I get up I rate my fatigue , activity, and satisfaction level from 1(lowest) -10 (highest). I add a few notes on what I 'm doing and how I feel . I started off the day pretty good with a rating of 3 and by the end of the work day at 9. Right now I'm about a 6 . Not the best level to be at to blog .

Not sure how long I'm going to keep doing this fatigue diary. I think the purpose is to track what times of the day I feel most tired and try and rest. Not an easy thing to do when I'm at work. Besides it's always different .I don't really notice a pattern .Some mornings I'm a dead beat , others I'm fine. Some evenings I can barely move. Some entire days are like that too. The fatigue I hate most is when it comes on suddenly and I get this fever. I have to be careful then not to hurt myself . I lose my concentration and sometimes my memory. Like last Monday when I was working on a file . Suddenly I felt so tired , feverish , and then my mind went blank . I started crying to myself quietly . I hate that .Hate how I seem to have very little control over my emotions.
At least I didn't carry on like I did at Christmas getting angry with everyone and crying endlessly. What a crazy pain in the neck I was. I know it's hard for them to understand what the heck is going on with me. I don't even know.

The doctors , the MS society people, tell me to rest, not to get over tired , as it will aggravate my symptoms. I know it true, yet resting doesn't always work.Just as I start to relax I'll get this twitching in my neck or legs , this odd numbness in my forehead ,or a weird sensation like an electric shock going through my body . I start worrying about everything. Other times I get so tired I conk right out and then a twitch or pain will awaken me suddenly.

The only thing that seems to work to stop it in it's tracks : sleeping pills, but I'm afraid to take them all the time. I ration them to 1 or 2 per week . Don't want to turn into a junkie . Which is a subject for another night. MS and drugs.

Wednesday, January 16, 2008

May as well start on a good day

How to deal with MS? I have no idea. Nothing seems to work so far,and I'm leery of doctors,drug therapy,
psycho-therapy, group therapy, support groups and all the other people and things out there that are supposed to help. All of it tiring. Ahh yeah, that is one thing most MS'ers ( is that a good term ?) have in common, fatigue.
Since today I'm feeling less tired,I thought it would be a good day to start a blog about MS and talk about fatigue, which in the Oxford dictionary is described as "weariness from exertion". Only thing is,I can feel weary from doing not much of anything. I find the terms fatigue, tired, weary, exhausted, inadequate. They just don't describe my experience. Like I'm a piece of wilted lettuce. I'm reluctant to start a task because I'll get half way through and be too tired to finish . Any activity of any kind is impossible. Wishing I could hire a butler to do everything and just sit on the couch and watch movies all day, only my eyes are blurry and I'm too tired to watch movies. Like I want to die only I'm too tired to do anything about ( No don't worry I'm not suicidal) The worst was the spring and summer of 2004, before I knew I had MS.

Everyday I would get up and after about an hour want to go back to bed . Not because I felt sleepy, in fact lying down would sometimes be worse ( explanation of why, to be tackled another time).I felt so weak, felt like even the simplest chore was impossible. Conversation was such an effort, making decisions impossible. Over and over in my mind the thought " Oh go away, everyone and everything ,just go away!"

When I finally dragged myself ,that is, when my son dragged me to the doctor's walk clinic,I was like a rag doll. I went there because I had terrible dizzy spells the week before and couldn't get out of bed for two days. I thought dizziness was the result of this unusual fatigue. The doctor thought I had an inner ear problem and referred me to a ear, nose, and throat specialist. That was the beginng of the long journey to now, when I have finally been told I have an appointment at the MS clinic in June. Yeah it's taken awhile but I know other people who have waited much longer to get a diagnosis.

My next entry I think I'll talk about ways of coping with fatigue, which haven't really worked all that great.