Lassitude

Lassitude: Langour, disinclination to exert or interest oneself.

Last week before attending one of many tiring meetings at work, I printed off some information from the MS society about fatigue. I handed copies to the people at the meeting and simply said "this is the reason why I want to work at home". The word lassitude,jumped out at me. The definition of it suits me so perfectly.

Before 2004 I would never have been able to imagine the fatigue I experience now. Would never have thought that lassitude would become a part of my life. The disinclination to exert or interest myself comes partly from fear . Fear, that I will start a project, not be able to finish it, and end up with a mess. I look around my house at all the things that I would like to do and I cry, because I'm afraid to do them. Fear, when I have that awful feverish feeling,get so tired, so suddenly, and the switch in my head shuts off. When it shuts off, I can't do a thing or I do stupid things,like injure myself, cross the street on a red light, fall, or have an anxiety attack.

I remember the summer of 2005 when I was invited to a wedding . It took me the entire morning of that day to get ready. Not because I was getting really decked out, but because I could barely do a thing. Even combing my hair was a huge effort
I sat not wanting to go and yet somehow I was able to peel myself off the couch. The whole experience was an ordeal. I felt like a zombie. What made it worse is that there were people there I hadn't seen in ages .Inside I was happy to see them, outside I could barely make the effort to say hello. It was like a strange dream. I felt like I wasn't even there. The whole summer was like that.

For a person who use to be so active, it's difficult to get use to this new weak, "lazy" me . I know there are people around me who think I'm not trying, but I am .
I am

It is Not Procrastination It’s MS Fatigue

I feel tired all the time more so when I think of all I have to do such as housework, studying for class, preparing for meetings, etc. There are days I can stay in bed all day and not move unless I have to go to the bathroom. When I feel like that and do it, my mind does not let me rest because I am thinking about what I have on my plate to do.

I am one of those types of people that hate to be late or unprepared for anything. I would be in bed feeling guilty about not completing a task and possibly not being prepared for a meeting or test. At one time, I convinced myself that I was a procrastinator.

I complete my tasks and meet deadlines, therefore, I stopped feeling guilty when my body wants to rest. I stopped feeling guilty when I pace to do my housework and I cannot complete it all in one day. I stopped feeling guilty when I have days or weeks before a test or meeting to prepare, but wait close to the day of to start preparation. Pacing and resting when my body tells me is what matters and what is important.

It is not Procrastination It’s MS Fatigue...bite me!

Thank Heavens for Art

A grim meeting today. I guess I was a bad girl this year because Santa won't be granting me my wish to tele work, at least not any time soon.

I found out much to my dismay, that it will be a least four more months until work gets the Health Canada report, because they are back logged. Yeah I'm just one of many in the pile.

Four more months seems like an eternity, especially when I'm already in the hole for so much lost wages. It's so insulting to be told that I'm "not trying to help myself" and " you're not the only one in this situation" yeah thanks for that. When I was told that they (management) " really are in my corner" and " really are trying to help", my only reply was "if this is help, please stop trying to help me" I wanted to tell them to get the hell out of my corner, but decided against it. I still have some self control left .


Here I am heading into 2009 with very little money , everything falling apart in my house , and tired beyond descriptions . Oh well the rich folks are suffering too .Poor souls don't you just feel so bad for people who think they can live and not work for their money. Just shove money in a hedge fund and let the "gurus" make it work for them. They won't even be able to afford to go to the doctor now, Ha Ha. I'm so mean. Can't help it I'm in a foul mood. I really don't know how many more poor people we can have in my city. There are already so many poor and the rest of us are stretched and can't help much more. Damn all you reckless bankers, economists, financial advisers etc. etc. You have ruined the world. I'm not the only one who thinks so

At least there's art. Art is great therapy. Try it, check out ArtBeat

I wish I could afford to go to New Orleans to see the exhibit Prospect 1. They are planning to make it a yearly event. Perhaps if my prospects improve, I can go see it next year. yeah O.k I shouldn't try to be so clever. Seriously though, if I could travel to see every art exhibit in the world I would. Art is soul food.

I'm making so many spelling mistakes and I'm looking right at the keyboard. I feel as though I'm dyslexic, reversing letters in words .

One last comment about work I really would like to tape some of the conversations at the office, so that people would realize that when you dwell in the land of grey cubicles, you really should be careful what you say. Even though you can't see people, dozens of ears are listening and they aren't even trying. .

Hard Drive Horrors

Thought that while I wait for the computer guy to call back I'd do an update here. Right now the other computer is formatting XP. It would actually be a very easy thing to do, install a hard drive and an operating system. The trick is knowing were all the menus are and what to look for in them. That's how they keep you a tech slave, by hiding little bits of information here, there, and everywhere. Instructions for anything to do with computers are either vague or misleading.
"Just plug and play" remember that one, when USB ports came out? Yeah Ha Ha!
I suppose it keeps people employed in what ever country this guy is calling from. It's a dead give away when they start asking what time zone you live in, or are shocked when they ask you how the weather is and you tell them it's 5C.

Right now it's raining and has been all day, which is better than the -20C last weekend.

OK here's my MS challenge : To get rid of these anxiety attacks I have worrying about fatigue.
I get freaked out every Sunday worrying wether I can make it through another week. Worrying, that when I'm hit with those sudden bouts of extreme fatigue if I will pass out or have an accident. I think that's one reason I stay home some days,(like today) because I dread the horrible brain dead exhaustion at the end of the work day and it's not even as bad as it use to be thanks to the drugs.
Maybe my friend is right, maybe I will here some good news about my work situation before Christmas. Which would be the opposite of so many people hearing that they will be losing their jobs after Christmas.
Well gotta go. The computer is done with set up and is copying files. I'd like to know what files exactly since everything got wiped out. Hmm, must be those little hidden things I can never find.

Winter Blues

Winter is here even though the calendar says different. It's bitter cold out and I had to give in and wear a heavy coat, hat, and gloves today. What I don't like about that is I get overheated walking to work and it takes me a good half hour to recover once I'm inside.
I think the cold affects me as much as the heat . I was a wreck this evening and the odd tingling and leg twitches are back . I thought the Amantadine had taken care of that. Is it possible that the drug is wearing off ?

Wednesday is flu shot day. I know some doctors say you shouldn't get a flu shot if you have MS, as it triggers your immune system and can aggravate symptoms. My answer to that is the flu does that too and makes me feel so sick I want to die . I'm also told the flu shot is only 40% effective. Were do they get these numbers ?

Last time I had the flu I ended up in the hospital, so I'll take my chances with the shot and if 40% means that one bug passes me by, that's good enough.

I can't post any photos to my blog until I get the proper photo program on this computer. I don't like the one that's on here, yet I'm way too tired to do anything about it right now.
I really hate feeling like this all the time.

Fail

Several times this week I've wanted to blog only I've been too brain dead. My short term memory is, well, getting shorter and my anti fatigue pills only get me part way through the day. Result is I'm useless in the evening.

Can't wait to see the doctor on November 28th. If I have to beg on my hands and knees to convince him that he must, must, write to my employer and make them understand that I:need to work at home!
Friday afternoon at the office I came very close to a break down. Amazing how a tiny little incident( which I can't discuss here otherwise I'll get sacked) can do me in. That's how weak I am now and tired , Oh so very tired. I'd really like to know who came up with the decor scheme of grey walls , grey carpets and grey baffles( spell check: that's how we spell grey in Canada!!!)

The repair work on the side of the house hasn't stopped the water leaking in the basement. Heavy rain today resulted in another leak. I think my original idea to move the eaves trough drain pipe is still right . Tomorrow I might call the one guy who agreed with me and get him to move it. There is only a little bit of water but over time that could be a disaster. Once it's dry again he can get to work building the new stairs. If only they had listened to me three months ago, I could have avoided this and I would have my new stairs by now. It's been that kind of a year,me talking, nobody listening. Hey I don't want anything special. Just a dry basement with decent stairs and to be able to keep working.

Otherwise, I maybe late finding this blog and I think perhaps I've mentioned it before ( short term memory again!!) It's the Fail blog which I will ad to my links. I get a laugh out of it.
Something in short supply around here lately, although I did read an article last week that a good cry can be as therapeutic as laughing . Yeah but laughing doesn't make your eyes get puffy and stuff your nose up.

Credit Munch

OK I ripped off the title of my post from the Independent.
It's been a sucking weekend. No comment except to say I'm feeling better tonight and I'm looking forward to being off on Tuesday. Who knows maybe I'll even be able to put in a full paid week. Sad that I push my life away, but these days it's the only thing that keeps me going.
Anyway enough of my whining, here's an article about the rise in lunch box sales. Everyone is getting into taking a packed lunch to work and not just a baloney sandwich and banana. No people are getting imaginative with their lunches.

I make a lunch everyday. Mostly things I can nibble on like pieces of cheese, veggies, fruit and a couple of cookies. We do have a decent lunch room and several mini kitchens at work. My new routine is to go to the lunch room after the mid day rush. I crash out on one of the lounge chairs for twenty minutes or so. The lady I sit next to now at work is cool and doesn't make a big deal about me going for a brain break. It helps get me through the day. I'm still extremely tired when I get home in the afternoon. This weekend it took the full two days to recover. Oh ! can I keep going ? I suppose I have no choice . I'm hoping for some resolution of my work situation by the end of November.

I know it sounds odd for me to say that I'm enjoying the early darkness and cooler temperatures. I find it relaxing.

While I'm on the topic of food Here's an interesting program at St Anne's hospital for veterans.
They are able to make some very appetizing looking food for patients with dysphagia ( difficulty chewing and swallowing) Looks like the real thing yet is easy to eat. Check out the photo of one of the meals. I ran across this while checking some information for Remembrance day Nov. 11.
I'll be doing a post about it then.

Congratulations From A Cynic

Congratulations to America! Haven't got much to say about it ,as I'm very cynical about politics and politicians.
The new President is a man, not a God, and he's a politician. Sadly, due to the reckless policies of the current U.S. administration, the new President will not be able to keep many of his promises.

America, is bankrupt. There was never any money for health care, infrastructure, or education, but suddenly tons of cash was available for the private sector, from a government already heavily in debt . Now there really won't be any money for health care, infrastructure, etc. etc. Cynical ? you bet , and I'm not the only one
and this guy , who is extreme, and slightly mad, but I do love his column

I'm not letting my own country off the hook or the rest of the world. We were all of us blind greedy fools , and now the party is over. The hangover will take a very long time to recover from.

Maybe I'm just cranky, as this week isn't going so great . I'm home again today exhausted and in pain . The doctor's office called on Monday, to set up an appointment for November 28th. Usually when there's good news, the doctor calls me himself. I can only guess that he found something interesting in my spinal fluid and wants to tell me in person. Not that he's going to say anything I don't already know. I'm well aware of what's happening to my body and brain and there ain't much he, or I, or anybody, can do about it . There's no miracle drug out there for me ( including the latest find, alemtuzumab).
From now on it's all about preserving what I've got and making the most of it while I can. I'm cool with that.
The cable guy is coming over this evening to move the modem. I'm looking forward to having a newer faster computer( see all past posts on computer and tech woes)

Mums

OK. I'm cheating, these are photos from last year's Mum show. I didn't make it there this weekend due to bad weather and (what else) fatigue! Maybe next week end . The show is on till November 2nd .

Up, Down, All Around

Like the financial markets and the weather, it's been an up and down sort of week for me. The Amantadine, I will say once again, works, yet the effect is very uneven. I can have a good morning followed by a not so great afternoon. The evenings are slightly better allowing me to stay up later. Instead of wanting desperately to go to bed by 8:00 p.m. I'm feeling that way at 10:00. I still took a sick day off work on Tuesday, and went in late on Thursday, which I'm not happy about. Not much I can do when my body simple refuses to cooperate so that even walking down the stairs is an effort. Fortunately I have some money in the bank. The unpaid leave is really starting to hit my paycheck . When I go for my health assessment next week I'm going to push hard to get tele work. I think it's the answer to allow me to keep working.

It's hard to explain to people how tiring it is to go into the office everyday. There's never a moment of peace and even breaks aren't restful. Everywhere I go there are people milling about. I try to close my eyes for a few moments and sure enough that's when somebody will pop up at my desk wanting something. I'm told I can use the "quiet room" to rest, but Oh! what a hassle that is. It's like trying to get admitted to the hospital and I really don't want a fuss around me when I'm tired and I don't really want to lie down in a dark room either.

Then there's the getting ready for work and the getting there part. Hey I'd like to go to work in my robe and slippers, with my hair in a ponytail, and no make up, only my vanity won't allow it.
I do dress much more casual these days, don't bother with accessories, don't fuss with my hair, and have toned down my shoes, which is as much as I'm willing to let go for now. I'm already having to give up so much with MS, can't I at least still have my mascara? Silly Libra vanity I know. Can't help it.

They do have a job lined up at work for me that would be ideal for tele work. I'm so superstitious even just writing about it makes me think I'm jinxing myself. That's Catholic /Italian/French Canadian , brainwashing from years go that's still in me. Yes Italians and French Canadians are a very superstitious lot. I remember when I was pregnant, my mother, who is a very intelligent lady, covered my eyes when we passed by a person in a wheelchair. She believed that if I looked at the person it would be bad luck and harm the baby. On both sides of the family they always talk about good luck, bad luck, omens, signs, curses, spirits, fate, etc. etc. I try to tell myself it's all nonsense,
still....

Got a letter from the doctor today about more tests on October 16th, which I have no clue what that's about. Have to wait and check on Monday as the office closes early on Friday. Maybe over the weekend I'll remember exactly what the doctor wants to probe next. Once I get my assessment done I think that's going to be it for me with the tests. What the heck good do they do ?

She Won't Go Away

I feel horrible. Thank goodness there was dinner ready tonight . I've been taking photos and will post them on the weekend because I'm way too tired to do it now. . I wish Mother Nature would give me a break !

Home Today

I'm home today . Hard to describe this weak wasted state I'm in. I'm only writing this as a record of how I'm feeling so can tell the doctor. Things started to unravel yesterday afternoon and went downhill from there . When I got home from work I kept telling myself all I had to do was rest and I would be fine . In the evening I got everything ready to go to work today, had my clothes, lunch, and bag organized. Decided to go to bed early and listen to music, not feeling sleepy, just weak . Over and over in my head I played the mind games," Oh I would be fine", " I just did too much during the day" ( how much is too much and how can I tell before it's too late?) " have to take it easy" " rest and I'll be OK".

Then this morning I couldn't get up . Just couldn't get my body to do anything. I hate lying around in bed, just hate it. Finally around 8:00 a.m. I lifted myself up thinking I should at least call work. I did that and got a not very nice acknowledgment from my temporary boss(yeah another one). Not that I blame her, she didn't ask to get loaded down with a case like me. Anyway, I feel too lousy to worry about it.

Slowly I managed to get washed and dressed and came downstairs to have breakfast. Don't think I'll be doing much stair climbing today. I'm alone and my legs are wobbly. Stiff, and yet at the same time feel like rubber.

Have I left anything out ? No except that I did buy a Wii, only I'm too brain dead right now to figure out how it works. I'm sure it's very easy. Maybe later and maybe later I'll have something good to write about too.

I Wish I Known Before This Happened

This has been a trying week, today marks the third week I have started back in giving myself Copaxone injections. I was told by the Shared Solution nurse to put my auto injector on number four instead of six when I am injecting my thighs and arms. Each time I had an IPIR it was when I injected my thighs and that is why the nurse suggested I put the dial on four.

It did not feel good injecting myself again after two months of being injection free. In the beginning, my injection site would swell and spread to the size of a quarter and leave a lump for days. I wanted to quit the injections, but I feel more secure of my disease progression slowed by taking Copaxone. I also know the worse that can happen to me while being on Copaxone. Hell, if my last IPIR did not kill me, I know I will not die if I get another one while being treated with Copaxone.

I noticed while being back on Copaxone how fatigue I was again. I did not have the energy to do much of nothing and I slept to the point I actually lost track of what day it was. That was the strangest feeling thinking it is Thursday, but it was actually Friday. I had better stop watching Twilight Zone because I felt I was in on when I literally lost track of my days.

When the above picture happened, I was mentally preparing myself to stop taking Copaxone again regardless of my belief that it was slowing the progression of my disease. The blue yarn marks how wide my injection site that night spread and every pore in that area was open where a pen tip could have fit into them. To make matters worse if you look closely I also had a hive form in that area.

I never experienced an injection reaction like that before and I began to think my body was rejecting Copaxone. I went in to see my neurologist Friday, two days after it happened, the area was slightly swollen, pores closed, hive gone, and I showed her the picture. She is reluctant to switch me on Betaseron or Rebif so soon after getting back on Copaxone and Tysabri is out of the question. She prescribed Provigil for my fatigue and a nurse will be coming out to give me another course on injecting myself. I really do not give two cents about a nurse coming to my home to give me injection training again. I want to know how I can make my injections tolerable.

A different Shared Solution nurse called me Friday evening to discuss my injection reaction and set up to inform me they will be sending out a nurse. He asked me what the dial of my auto injector was on when I inject myself and I told him four, he stated, “A four was not a good setting if my build was not large and he suggested I put it back on six.” He also stated, “In the past several years they found out that placing a warm compress on my injection site for five minutes before injection has made the injections tolerable with less reaction problems.”


The above could have been prevented had I known what the nurse told me Friday evening and I do not understand why I am the last to know a warm compress for five minutes before an injection would have made all the difference. My injection sites since Friday evening had been tolerable and the Provigil is doing its job with my fatigue. I am looking forward to a productive week Monday because I did not get squat done last week.