Thursday, October 25, 2007

Neurological Conditions: fatigue and extreme fatigue

Fatigue; I made myself a promise this week, in bed staring at the wall, that I would try explain fatigue. The official definitions use words like “tired” or “boredom” which means that either they need to come up with a new word (“soul sucking energy vortex”) or the definition was made by people who know nothing of fatigue.

There are so many conditions that have fatigue; I don't know what they all feel like. I read once about neurological fatigue which said, “Fatigue is such that if a fire alarm were to ring letting you know the building was on fire, it would make no difference, you would be incapable of moving.” I think often of what they referred to as “battle fatigue”; soldiers not even flinching when bombs exploding near them would shower them with dirt, their eyes a thousand yard stare as they just keep going. That’s all that matters; keep going.

This last two weeks I haven’t been overly sleepy (managing 10-11 hours a day, which is enough to survive), nor depressed. I just can’t......do. People tell me to go places and they push me there and I focus on that and I seem almost there mentally and they come back five or ten or thirty minutes later and find me leaning over staring into space. Sometimes I try to find a wall so that I don’t fall out of the chair.

It’s odd, I’m so starved for interaction that when a home care worker came on Monday, I stayed upright so I could say some vague nonsense, she left to do my laundry and I laid my head down on my knees in the chair. I wasn’t bored, I wasn’t really anywhere. I had no sense of time. I knew that she might come back, or someone might come back today. Was there anything else to know?

By the end of the day, combined with the pain, I have been unable to control my trunk, my neck. I have been literally poured into bed. I live in the time between each breath. My face is expressionless as the tears roll down the sides of my face. I ask them to promise me they won’t leave me like this; staring up into the darkness for hours. We try another pill, another pain pill, another sleep aid. It’s been an hour. It is like this many nights; sometimes many nights in a row.

Earlier this month and last month, I would be too fatigued to breathe, or rather, my lungs couldn’t expand and I was too fatigued to stop from choking. I didn’t even really feel anything, just the floating in the darkness. Good thing it takes several minutes to die. One home care worker grabbed me by my hair to lift my head where it had fallen over a rail, obstructing my windpipe. “It took me a while to figure the noise out.” She said. My throat had made a clicking noise.

Linda’s observation is that fatigue is the time after you have fought to stay upright and lost. That it has spread to your whole body which is now a dead weight. Sometimes, I think there is this little ball of energy, and the line that lets you touch a bit of it stretches and stretches like taffy. This is when I stare at the screen, watching some inane US series, enough energy to twitch a finger on the roller ball. I have to shut down everything to keep that line connected. Sometimes the line breaks and Linda comes in to find my head lolled sideways. I’m lucky to have Linda. Without Linda, I would stuck in bed. We have a special chair that cradles my body and supports my head. She can put me in it and in front of the computer. She talks to me. I seem more human somehow sitting up (well, sitting at an angle technically). When she needs to she can read my blinks and changes in breathing and we have a conversation, like a “real” couple. Fatigue doesn’t allow for a lot of dignity; Linda gives that back to me.

What don’t people get? Hmmm. I think they think I should get some sleep. They can’t imagine waking up like this. Can’t imagine that by the time I get dressed, brush my teeth, wash my face, go to the bathroom, have a cup of juice, take my morning pills and move a total of 40 feet that three hours have passed. Actually I can’t imagine it. What do I do in all that time? Well, drop things a lot of the time (at our house we call this “The dropsy’s”). So some days the time I stop brushing/grooming my hair is the moment I can’t lift the brush above my shoulder. That will do. I rest between attempts to put in an earring. I can only hold my arm and hand up for so many seconds and I can’t seem to find the hole in that ear. Stop and rest for a few minutes. It is insane. I know that.

I just have these rules. Every day I have to get up (if possible), brush teeth, put in contacts, brush hair, a touch of foundation, some lipstick if I am planning to go out. I get dressed, I put in my earrings, I put on a headband. I drink some liquids, preferably before 1:00 pm, and have my “morning pills.” At least three times a week I go out on my own, downhill to the video store, and back. A 17 minute round trip. Then it is time to sleep again. I take out the earrings, I take off the headband. I sleep. I try to get up by 6:00 pm; 8:00 pm at the latest. Three times a week I shower. That adds an hour usually.

I do have energy, I have it in hours, groups of hours, sometimes even a day without fatigue. I go out, I chat, people want to know “what have I been up to?” Uhhhhhhh……… They think what they are seeing is how I am all the time. In a way I envy these people, those who only know the best of me. Instead by the time I get up and partially dressed the phone rings. It is some health care person who is letting me know they have booked another appointment for me. To get there requires two bus transfers. The last time I went to this meeting I was told, “You don’t seem to be making an effort.” The worker seems miffed I am not excited about this meeting she has scheduled for a time convenient to her. “You’re not my only client!” She says before hanging up.

All I can think is “Thank God!” Back to getting dressed.

Please add your experiences.

18 comments:

Casdok said...

My experience is having a child who only sleeps 3 or 4 hours a night. He is a lively as anything and i more than knackered. It makes me very emotional and much more easily stressed.
I admire what you make your self do.

The Goldfish said...

This may not help in the slightest but with time, you don't feel it so much any more. The different levels become different states you experience; most people have sleeping and waking, I have sleeping 1, sleeping 2, sleeking, waping, waking 1 and waking 2.

Actually, I don't really have names for them, but they exist and become defined by what I am capable of doing rather than how I feel. And this way, I feel it less, I suffer less. Of course sometimes I feel completely gruesome, but as far as fatigue is concerned (as opposed to pain, nausea etc.) this is more often to do with a conflict between desire and capacity. I only feel "tired" and suffer with fatigue when I really want to be awake, to think straight and so on.

I don't think the answer is as simple as not to fight it. I think, fatigue being so extraordinarily subjective, one has to test it. You know that lack of exercise, poor nutrition, boredom and particularly depression will worsen fatigue, and yet fatigue puts you in danger of all these things. A little wrestling is required just to make sure you're keeping yourself going as well as can be.

It does get easier, honest. That having said, having a crappy brain is the second worst thing that I have ever experienced, much much more incapacitating than pain and other crap.

Marla Fauchier Baltes said...

Fatigue sucks. Before my surgery for endometriosis I was always tired. No matter what I did I needed more rest and when I woke up I still felt tired. But, after my surgery when I was in recovery the fatigue was way worse. After showering I would need a two hour nap. My brain was always saying, "Sleep! Just go back to bed!" For me fatigue is torture. As I get better it is improving but I am still tired a lot. I can only imagine in your situation that fatigue is even more challenging and can get you really down. I think it is great that you are explaining it and sharing your struggles. You are inspiring.

em said...

Dude. My experience is that I get anxious about things I can't control and then get frozen in paralysis. It's a big mind fuck and I hate it.

I hate reading what you are describing too, because it seems too hard. But I'm knocked out that you are writing it.

Tom P. said...

This sounds a lot like my wife. When she is having a fatigue day, she usually just falls asleep where ever she is. It might be standing up, or hunched over the computer, or really anywhere. It can take her an hour or more to get dressed and she has no idea what took her so long. She can suddenly drop off in the middle of a sentence. The other night she fell asleep while climbing up the stairs to go to bed. I found her sitting on the stairs fast asleep. I couldn't get her up to bed so she slept in a chair downstairs.

She has pills she takes to help with the fatigue. The name of the pill is Provigil. She calls them her wakey-wakey pills. Provigil is listed for narcolepsy but it is being used by more and more neurologists for fatigue.

Artistic Soul said...

What you are describing is eerily similiar to how I've been feeling with this odd pain...

Sally said...

Dear Elizabeth, I too am in awe at what you write, and how you write about it.

I wrote on my version/level of fatigue last year and had some insightful comments from BMone, Goldfish and Charles Dawson.
www.lifeintheshire.blogspot.com/2006/08/tired-tired-or-tired.html.

I have just read your Ouch post from 14 October "I'm dying thanks, and you" ... I don't often read Ouch so I missed it earlier. I am sorry, very very sorry, at what you are dealing with, but gloriously pleased that you are around and giving life a good punch whenever you can, and I hold you in my thoughts when you "shatter" which I now see is often (in between boxing bouts ?!).

Now a request from an admirer: I think your Ouch post is too important and too well written and described, to be left on Ouch only. If you have not done so already (sorry if you have and I have not seeen it) please bypass the BBC's copyright rules for Ouch and re-post it on your blog, and then put a permanent link to that on your page - not a link to its location on Ouch 'cos the BBC might loose it.

with love.

Ms. Pet said...

I have been suffering a similiar reality this week. Last week, because I comitted to a friend, I volunteered at this conference. I didn't participate in hardly any of it, the volunteering alone wiped me out.

I've been at home for the last four days, unable to even lift my arms up to be able to wash my hair, shower, anything. I'm starting to think I'm going to have to get my hair cut super short again, which I absolutely hate as I "Butch Up," extremely easily, and being a Femme... But when I'm suffering from the chronic fatigue, I can't blow dry my hair or style it, makeup, shaving, bathing, washing my hair, it's all extreme exercise for me.

I have been quite down this week, depressed, because, of course, when you can't get out of the house, do anything, etc. you feel trapped. It's different from taking time alone to reenergize. *sigh* I have reached out on LJ and that's made a bit of a difference.

Anyways, you aren't alone. If I had the energy I'd chat with you on the computer etc. Except that, sitting at the computer is too much for me right now, so I'm doing less and less. I can't even paint or sketch my muscles are so wiped out. *sigh* I can deal with the chronic pain, as, being hyperactive, I think that gives me a higher pain threshold or the ability to become distracted from it easier. But chronic fatigue? It drives me bonkers. I feel literally like one of those animals in a cage at a zoo that are just lying there and you know they are terribly unhappy and sad because they should be out bouncing around the feilds, etc. But are trapped, unable to bounce, move, do much of anything. That's how it makes me feel. *big hugs to you*

Elizabeth McClung said...

Casdok - the odd thing is that no matter how bad things are for me, I can read someone else's life and think, "Sheesh, glad that's not me." So, I don't know how you do it, I guess probably the same way we all do, one day or one hour at a time?

Goldfish: This is helpful, or hopeful, I think. Yesterday I had to try and narrate my physical decline to a GP, what I could do in March, in May, in August, and now. My alter motto is "Three hours a week" - which means that three hours a week I get out and do exercise or go somewhere or do all these wonderous adventures which usually means linda has to push me someplace and I do something for an hour and she pushes me back.

Of course, what I REALLY want to know is - what is the worst experience?

Elizabeth McClung said...

Marla - thanks for your comment - I am determined to get some treatment or try to get treatment, either what Tom suggest below or something for my dying thyroid (as Linda points out, "waiting until it dies would be fine IF you were otherwise HEALTHY and IF you had a normal lifespan")

em - ironically, I had overcome a type of agraphobia (Sic) which limited my ability to go only 6 blocks from my house last year, so I know how humiliating/frustrating/feeling helpless such left me feeling - which is sucky in a major way. I am hoping "knocked out" is a good thing in writing?

Tom P - please send my wishes to your wife and to you for the thankless hundreds of tasks being a caregiver is. Thanks for the info on the drug, I have looked it up and will definately follow it up, even if I have to try some dodgy methods to try it.

Elizabeth McClung said...

Artistic soul - I've read how you are feeling and I hope the doctor can provide a solution that is simple and effective soon. Please hang in there and know I am thinking of you (in a positive way!).

Sally - your writing post was very effective, it was like reading about myself - I want to write about the speech at some further date but what you wrote was so....so spot on (oh the amounts of time I have to ask linda in a group conversation "And what did I say?" because from her face I have done some odd word substitution)

It seems ouch is ready to be disabled by not mortal as yet, alas. Thank you for the encouragement and I will obey your commands since my simple rule is obey anyone who likes my writing (I'm an easy date).

Ms. Pet - It must be very, very hard for you right now becuase I know you like to bounce (that's pretty much how I think of you - bouncy, bouncy - particularly when you wrote EIGHT posts on your blog in ONE DAY). Hang in there - unlike the tiger in the zoo, I think I see freedom in your future (and a halloween party in the dungeon too?)

kathz said...

I'm too tired for ordinary reasons (work. transport) to comment properly - it's not the same thing, I know. But I just wanted to stop by and let you know I'm reading your blog even if I've been too busy/tired to comment for the past week or so.

Very best wishes - I'll try to send an email soon.

Zephyr said...

LOL! You have no idea how much Ms. Pet likes to bounce. She's a rubber ball in motion ordinarily, even on bad days.

Wow, I thought I knew crushing fatigue but this goes beyond my experience For me, it is depression that causes the worse fatigue, because I'm too apathetic to care about doing anything.

You are truly a Femme, to use so much of your precious energy in grooming and beauty maintenance. That's a compliment, coming from another Femme - but good Lord, when I'm sick, my beauty care regime goes out the window. If I shower and brush my teeth and comb my hair, I'm lucky. Of course, my hair is curly so I can get away with not combing it sometimes.

Wheelchair Dancer said...

steely stare, glowering glare at fatigue.

hope it works.

:-)

WCD

The Goldfish said...

Oh the worst thing is mental health stuff - paranoia coming out tops, which is difficult to describe without it sounding terribly comical - and indeed, is terribly comical with hindsight (at least, mine has been), but spectacularly terrifying at the time.

If nobody has suggested this already, it could be extremely helpful to keep an activity diary, just a basic list of the stuff you've done, how long you did it for and how much fatigue you're experiencing each day.

There will be patterns, it can help identify things which are taking more energy than you thought and it can be reassuring when you realise that you feel crap today but had a really busy day yesterday (it's funny how we forget).

It can also be very useful when talking to doctors; information is power and all that.

However, depending on exactly where you are with things, it can also be quite demoralising and not worth the hassle. But it's a suggestion.

Dare I sak, is it good news re the GP?

em said...

Oh yeah, knocked out in writing is a good thing. I guess not so much in, say, boxing. Oops.

Sara said...

Your description of fatigue is so perfect it's giving me flashbacks.

I have fatigue at least one day of every month in connection with my fabulous peri-menopausal menstrual cycle. (In my family, menstruation is a nightmare, but menopause is even weirder. The women in my family really should have menopause pools where people bet whether whoever's going through it right now will keep all her organs all the way through or cave and get a hysterectomy, and if the latter, by what date.) It's like a kind of paralysis. I literally cannot move from where I am, and keep passing in and out of consciousness. This lasts at least 24 hours and happens every single month without fail, one to two days before the bleeding starts.

The only other serious fatigue I've ever experienced was when I was on what I lovingly refer to as the Life-Sucking Cancer Diet, which was the six months when the ruptured, rapidly growing, eventually ulcerated, and ultimately infected tumor in my leg was using all the nutrients I put in my body to enlarge to the size of a cantaloupe. It wasn't every minute of those six months that I experienced this. There was stuff I had to do in my life, and I would make myself do it whenever I physically could (like going to work), but much of the rest of the time I would lie wanly on the couch doing just what you described, staring into space, not quite aware of time. Often I couldn't even watch TV; it took too much energy to focus. I felt like an Edward Gorey drawing. But hey, I lost 30 lbs.!

Now I just feel like that one day a month. Thanks, biology!

Naturally, my hope for you is for all this to go away -- or mostly go away, like it has for me -- but for you still to be here afterward.

Anonymous said...

I am having major troubles with this and it's a battle I cant seem to win! I do fine for a while, I am myself and I am motivated to go out and take on the world, but before you know it, I am so tired that I cant hardly get out of bed to take care of my little girl. Her daddy has thyroid issues and so he sleeps all the time also, he just honestly thinks I am tired, but its not normal to not be able to peel yourself off the couch. Maybe it is depression, I don't know, but I have been this way my whole life. I am tired of being tired. I just want to be normal and have energy. I am so young and I am missing out on so much especially my little girl. I should try antidepressants, maybe it could help.