30 replies to this topic

[nomis]

Fatigue. I’m already feeling tired having to write this.
What are your energy levels like since you became SCI?

I remember struggling with fatigue way back in my early days (early 1970s). If ever I scrambled onto my bed only to realise I’d forgotten something then all hell let loose and I’d probably decide it wasn’t worth the effort to get back into my chair again to get whatever was forgotten.

These days it’s not such a big deal. The older I get the more likely I’ve forgotten something and usually, with a sigh, I get back up to fetch it. So, things have improved but I’m still way short of the energy I wished I could have. I still have to carefully budget my day to ensure I have the energy to do what I need. And most days I snooze off for a few minutes after lunch – one day, two halves.

[smokymtn memories]

That's something that has bothered me since the fusion surgery a little over a year ago. At first, I blamed being tired on the meds, (and that could be a part of it).

I use to sleep four or five hours a night. I was good to go! Not anymore. I get up around six or seven every day and by seven or eight in the evening, I'm ready to go lie down to watch any tv or read awhile. By then, I've had it and half the time fall asleep before I intended to.

[darrel]

the first month after my fall I was in the hospital, and got to the rehab floor. I was lucky to get three and a half hours of sleep. then I was up and going all over the hospital.
after my lapenectomy, I have slowed way down my energy level has really been shot to hell. and if I have things to do outside it takes it's toll on me an I usually sit around 2-3 days recoopping from it.

Edited by darrel, 07 October 2007 - 12:28 AM.

[PetitMortVampyre]

Technically I should keep out of this one (hi nomis) But we all know I am snoopy.

I just wanted to share my observation. I could be off, but I notice more people suffer fatigue, AB and SCI these days, than ever before. I happen to think its the food we eat (mind you I am on some major meds IF I feel like taking them.. outside of the evil ambien that makes me ramble). I just think that. I ate nothing but salad for months, cause I was in this bunny rabbit mode (no I didn't get to... like a bunny *cries*) and then a phase where all I wanted was messy hamburgers made on our forman grill (yes the days of me being a vegan are long gone)

I take supplements, cause I really don't eat as much as apparently I am supposed to, I will never take in however many damn calories they think I should have on a dialy basis, unless I just ate, oh, say cake (mmmmm, chocolate covered long haired man, sounds better, oops-ever the perv) And I have been known to go several days without eating. Then I will eat fine, for a couple of weeks, and still fatigued.

Mine could be the cancer, or could be the stress in my own personal upheaval they tell me is called a life. But a lot of my friends are just *always tired*. As to forgetting things, I would forget my own name, if it was not on the back of a large assed car (I swear, if I ever get fat, I will kill my father, he already jinxed me with the name as when you look at the car, the front end is rather... *out there* and every damn year that car gets wider-could not pass one on a mountain road the other day, 2007 Vette, had to pull into a damn tree practically to let him pass, stupid mid-life crisis penile compensation car-oops, sorry again)

Just my 1.5 cents worth - I am not even sure where the hell I went with this, I may have an ambien hangover lol.

Love, Light and Laughter
Corvette (aka mid-life crisis heh)

Edited by PetitMortVampyre, 06 October 2007 - 04:31 PM.

[Ches]

I was lazy before my accident. My energy level is still all over the place. I have fits of no sleep and no eating just because I wanna party. But afterwards they hit hard. 2-3 days of barely -to- not eating and I get really sick and lightheaded. I cant 'hang' like I used too. My days of living on purely coffee and cigarettes and seized. I have to eat lots of good food or I feel too heavy to wanna move, just like before, just now it takes all that extra effort because my legs are selfish and refuse to move.

I totally hate when I work so hard to do something, and forget a detail. Its frustrating. Im more likely to throw something else I need across the room, just to get that frustration out. Than I am to actually go do what I forgot.

I wish I had the engery to run around shopping, rearrange some furniture, get all ready and go party all night like I used too. Now Im lucky to get one of those things done. I think if I wanted to push myself I could carry on like I used too, I just dont have a desire.
Im too lazy to wanna carry around myself all day. I often compare myself to a siamese twin, whom just so happens to be totting around their dead half.. Thats what it feels like to me.

[DaveP]

Is it a lack of physical energy, or a lack of mental motivation?

When we're feeling good, we have plenty of motivation and therefore loads of energy. But when we feel low, we have no motivation and no energy. A lot is in our minds.

How about recovering from partying too much (can you actually party too much! lol)?! I don't get the hangover the next morning like normal - I get my bad hangover the next afternoon!

Lack of energy is also connected to food - what we eat, how we eat, mixing foods, food intolerances, etc. For example, it takes a lot of energy to digest food so it can be tiring to eat, especially if you haven't eaten well and then end up eating a big meal. Not chewing food enough means your guts have to work harder to digest the food... lack of energy can also be a symptom of food intolerance, which is hard to pin-point.

[Texaswheelz]

i've had plenty of energy since i've been injured, to much actually as i can't ever do enough to get rid of it. I've always been a night person and I'll have a energy surge at midnight where i wanna get up and go to a gym or something just as i'm going to bed. Where I used to go run a few miles or play a few hours of basketball it just isn't the same in a chair. You can wear your whole body down, so I can go swim or roll or what ever untill my arms and shoulders feel like they are going to fall off, but I still have plenty of energy to keep going.

[Cheshire]

Pre-injury, my energy levels were near-bottomless. I would go for a "leisurely 50 mile bicycle ride", come home and wear out the puppy in the back yard or on leash, yardwork, pottery manual labor, whatever...be able to go full steam nonstop from dawn to past dusk.
Now I'm lucky if I make it dawn to...lunch. The spirit is more than willing, and frequently forgets the flesh can't keep up. I pay for it with bad charlie horses and muscle cramps in my legs. Bad leg especially...will spasm and lock up with foot pointing as high as it can. I'll have to reach down and coax it to let go, then spend a while stretching and flexing it back and forth to keep if from locking right back up.

But yeah...unless I'm being masochistic or have no option, I do the split day scenario. It's either a nap at noon-2 or I come home from classes at 5-6 and wake up 2-4 hours later. I guess I keep pushing myself that hard in hopes that it'll make a dent in building up my energy levels....

[nomis]

When I have a fantastic day, such as a fishing trip in my speedy little rubber boat, I’ll arrive home very happy but utterly exhausted. I’m struggling even to hold my head up and any task I try I’m likely to bungle. So, I’ll flop onto the bed and I’m as good as asleep for the next ten or so minutes. Then I start to come right again.

Same when I was working. At one stage I was getting in and out of my car with the chair eight to ten times a day. I’d get so stuffed my fingers struggled to hold the chair. Nowadays I try never to do it more than four times and less if I can get away with it.

I like being active. I often feel motivated to get started. It’s keeping going that cuts me short.

On the good side, once tired I can drop off to sleep no worries. A break with a quick snooze at midday gives me a chance to get off my butt and stretch out those abdominal and back muscles plus ensure my energy will remain sharp into a late night. I like the nights.

[Ches]

Nomis,

I have both good and bad news for you,..

The good,.. your lack of energy has little if not, nothing, to do with your SCI!

The bad,..You're getting old!

Just Kidding!

[KimAndSophie]

My energy levels have been horible. No matter how little or how much sleep I get I wake up feeling tired, and once I'm out of bed even a fewhours I feel exhausted. I manage to push myself through the day most times without a nap or two, but by the end of the day I feel like I've been awake for days.

Even when I am really motivated and excitedabout something I still have to push myself really hard to do it because my energy level is just so low.

My injury wasn't caused by trauma, but by TM. I don't know if that makes a difference, but from reading about other people's experience who have had TM it seems like a common thing to have a huge loos of energy.

[nomis]

Ches, on Oct 9 2007, 12:48 AM, said:

Nomis,

I have both good and bad news for you,..

The good,.. your lack of energy has little if not, nothing, to do with your SCI!

The bad,..You're getting old!

Just Kidding!

Nah, that's true, too. I can't do half the things I used to. Apparently, with the ageing process, energy leaks out of your mitochondria so your muscles aren't so strong. Now whoever would have thought of that. And where is that leaked energy going?

Energy is going to be an issue for SCI. We've got fewer muscles left to do much the same work. We expect a lot from a few muscles (this reminds me of Churchill's speech ...never has so much been expected of so few...)

I'm wondering how people manage their fatigue levels. Maybe their lifestyles have slowed down and they don't notice the limits. I like getting lots out of life and know that it works better if I carefully plan not to overdo it (unless it's really worth it).

[wheeliebear75]

I think that initially there really wasn't much of a difference. As I've gotten more problems from pain........my energy has taken a definite dumpsky down the toilet. If I'm feeling OK then my energy is OK; I can be in my chair for 18hrs. If I'm having a bad day where my legs won't stop hurting and I can't get comfortable no matter how I position myself I may need to sleep 12hrs and during the 12hrs I was awake I may need to take a lie down break(where I lie down for 30-45min just to be horizontal) every couple hrs.

[smokymtn memories]

I think you're right, the pain is kicking my toosh. It's wearing to be in pain 24/7, even controlled pain takes it's toll. Like some of the others, in can take a day or two to recover from a day of more strenuous activities.

I'm not lazy, never have been, and was never a procrastinator, I now find myself putting off a trip to the store until I absolutely have to go.

[RacingAxe]

I find it a bit harder to get going in the morning. No matter how little sleep I got, I'd be able to get up and get going pre-sci. Now it is harder to get the heart pumping faster and it takes a lot longer to get ready. Moving slower makes me tired! I am not on any meds. They wanted so bad to give me muscle relaxers when I was in the hospital because they thought I might have some spasms. When I did start to have some spasms, I tried the muscle relaxers. They didn't help the spasms but they did make me very tired and it was much harder to get up in the morning.

[ParaforGod]

Hi Nomis,
My pain plays apart in my energy level but I also think what we eat plays a big part. My doctor recommended Juice Plus it has most of the vegetables and fruits in it. It is all natural. It helped me. Also have you been cheked for anemia or diabetes? Both anemia and diabetes can cause you to feel tired. We'll pretend age has nothing to do with it.

[nomis]

I've always wanted more energy. Before I was SCI I was keen on distance and cross country running. I like pushing limits and uphill is more to be admired than downhill.

Ten years into SCI I wanted to change my career. I worked nights and went to school during the day which included up to 16hour work days. I'm not averse to hard work or coming up with the goods when needed. But I wish I had more energy and stamina. On a 16-hour day I'd dash home midway for a quick eat and a 20-minute lie down.

A good change since SCI is that once tired I can drop off to sleep in a blink. It's true that energy is becoming more of an issue as I age but it's also reminding me of my first year SCI when I struggled even more for energy. It obviously improved.

I've learned over the years to take strategic breaks during the day so that I can keep functioning at a comfortable level throughout the day. I take note of my mood and know when I start grumbling and likely to drop things, I'm ready for some downtime.

So, am I correct to understand that few here take breaks to regather energy?

[dave420atya]

Mine changes from day to day. Depending on pain and mental state of mind. If I have a late night planed , I take a nap Before. Sometimes it does take a day to recover from strenuous activities . As child I hated naps ,as an adult I kinda like them. Damn, am I getting old?

[Susi]

DaveP, on Oct 7 2007, 02:22 PM, said:

Lack of energy is also connected to food - what we eat, how we eat, mixing foods, food intolerances, etc. For example, it takes a lot of energy to digest food so it can be tiring to eat, especially if you haven't eaten well and then end up eating a big meal. Not chewing food enough means your guts have to work harder to digest the food... lack of energy can also be a symptom of food intolerance, which is hard to pin-point.

I agree here with DaveP. One of the reasons why I wanted a Nutrition forum started, and has been, thanks Apparelyzed!

If you see the posting on ideas for our quads/paras on ideas for a diet, then I think it is worth pursuing this avenue, to see if ebergy levels improve.

I too would like more energy, and don't have since being SCI. I have however learned to pace myself, as I have 'panic attacks' if I do push my body to previous levels of energy pre-SCI.

As a matter of interest, does anyone else get these. Mine are worrying, as these attacks last anywhere from 2 hours to six! I don't have air, find difficulty in breathing, and my entire shoulder and neck muscles sieze up as well as below breast area. Very frightening!

I don't however take naps during the day, as bed is anathema for me. i spent so much time in bed during rehab that i avoid it as much as possible. I put our lack of energy down to diet, lack of sleep and the nature of damage caused by the injury. Our metabolism is just not right anymore and we have to, through trial and error, find the best way to cope. I do find however, the more I exercise, the better energy levels I do have.

Fond regards

Here's to us all finding the energy to do the most important things during our day.

[smokymtn memories]

I don't take any breaks thru the day. I did, right after surgery, in fact was in bed, more than out. Once I started getting up in the morning at my "regular" early time, I kind of made myself stay up.

I'll have to consider resting midday. It was never something I was good at doing, even when ill.

[Jsec64]

I was extremly active as we all probably were pre sci.
Now I feel much like you - I never feel refreshed even if I do have a good nights sleep. Many a time I could just curl up and go to sleep so I have to force myself to go on.
But if I had a nice little fishing boat like yours I could wake up pretty damn quick and have an enjoyable day whilst being wide awake.
Cheers Fella
John

[LadyPilot]

DaveP, on Oct 7 2007, 02:22 PM, said:

Is it a lack of physical energy, or a lack of mental motivation?

When we're feeling good, we have plenty of motivation and therefore loads of energy. But when we feel low, we have no motivation and no energy. A lot is in our minds.

For me, DaveP has hit it right on the head here. When I feel good, I'm almost hyper-active. Bring-it-on.... I can do anything. When things go wrong and I'm in the dumps, then all I want to do is slink away, hide and go to sleep.

I did find that eating refined food made me less likely to want to be active. Now, I eat food in it's natural state and my energy levels are much higher. I hardly ever need to take the cat naps I used to take.
Keeping a pony also forces me to get a good deal of fresh air every day, whatever the weather, and I'm sure that helps too.

[edlee]

Yeah, I'm slowing down a lot, but I also blame a lot of it on age. I was slowing down quite a bit before I was injured.

Then( and now) I found that the more energy I spent , the more I had. I've noticed that I usually feel more like doing things on the days I work out at the gym.

That may be because I'm already out and about, but I'ld like to ascribe it to the exercise.

It's kinda like love. The more you give the more you get back.
ed

[wheeliebear75]

I do need to lie down from time to time. If I am having a very good day then it isn't needed......but it's rare that I don't need any. Average is 5 out of 7 days I do 1-3 lie down sessions for 15-45min ea. and then I'm usually good to go. I think it's kind of like when people who have a bum knee can still walk some good distances.........they just have to sit down a few more times then the person with out the trick knee; I guess when you are SCI it's just even more so.

[T-Crip]

I concur!!! I am almost a year out and there ARE ALL of those things that affect my energy. THE PAIN for sure will drain you because you are fighting it ya know? And MEDS...obvious. EATING...again obvious. LACK OF SLEEP...I was also told by my PT which actually came true that you have to work a little harder to push through those fatigue times to BUILD endurance. And I have gotten stronger.

[nomis]

T-Crip, on Oct 17 2007, 05:05 PM, said:

...I was also told by my PT which actually came true that you have to work a little harder to push through those fatigue times to BUILD endurance. And I have gotten stronger.

True, particularly in the early years till you know your real limits better.
But when you hit that fatigue that is your limit then, in my experience, there's not going to be any more if you push on. Once I get heavy arms, clumsily fumbling and banging into things and on the verge of tears I know I've gotta take a break, even if just for 10 minutes. I like to think of it as managing my life on the limit. Sounds grand.

[dave420atya]

It sounds like Jsec64, Nomis and I need to plan a fishing trip. Can we all fit in your rubber boat , Nomis? If not , no worries , I have a large pontoon boat that can hold us and wheelchairs. Got bait?

Edited by dave420atya, 17 October 2007 - 11:49 AM.

[nomis]

Too late. I've sold it. I was needing more and more assistance getting it in and out of the water, etc and people around me have the audacity to have lives of their own and not always be on hand to meet my increasing demands. A boat left parked in the garage is a sad thing.

If I was rich I'd buy a big boat that we could all drive on to from it's ramped jetty. Instead I'm telling friends how nice their boats look and that I miss fishing.

It's not catching fish that I miss. It's having the excuse to dangle a piece of line in the water and do nothing but feel the sun and breeze for a few hours. Just doesn't seem the same doing it on the back lawn.

[darrel]

nomis, on Oct 17 2007, 11:20 PM, said:

Too late. I've sold it. I was needing more and more assistance getting it in and out of the water, etc and people around me have the audacity to have lives of their own and not always be on hand to meet my increasing demands. A boat left parked in the garage is a sad thing.

If I was rich I'd buy a big boat that we could all drive on to from it's ramped jetty. Instead I'm telling friends how nice their boats look and that I miss fishing.

It's not catching fish that I miss. It's having the excuse to dangle a piece of line in the water and do nothing but feel the sun and breeze for a few hours. Just doesn't seem the same doing it on the back lawn.

you know the fish bite near the bank also, plus you don't have the up keep. I'm selling my boat to a friend because It is to much and to hard on me. We have thought about a pontoon and leave it out all season and pull it for the winter.

[T-Crip]

nomis, on Oct 17 2007, 04:20 PM, said:

Too late. I've sold it. I was needing more and more assistance getting it in and out of the water, etc and people around me have the audacity to have lives of their own and not always be on hand to meet my increasing demands. A boat left parked in the garage is a sad thing.

So sorry...my ex doesn't get that....that people aren't at your beckon call!! Good grief! Somehow he just doesn't get that people have lives and SERIOUSLY get's annoyed and disgisted that people don't help me more! He's a big dummy!! Okay I'm done!! Hee hee! And I have those days too with the energy and hvae felt exactly what you described. I figured it was different for you later on but I thought gosh if me passin' on that info helped in any way... ya know? Hope you find that something helps you!