Jump to content


Photo

Learning To Pace Myself


  • Please log in to reply
12 replies to this topic

#1 shallow_water

shallow_water

    Member

  • Members
  • 75 posts
  • Gender:Female
  • Location:Pennsylvania
  • Interests:The lights of my life are God,my husband, my sons and of course my dog jake!

Posted 17 December 2008 - 04:10 PM

Since being dx'd I have had so many ups and downs. I seem to have a cycle of a couple good days then bamm a mack truck hits me and lingers for a week or two. I just can't seem to get myself even keeled. And recently I'm finally getting some relief from my bad neck from a wonderful chiropractor.

I've oly begun this treatment in the last few weeks as my Neuro just wants to give me more and more pills. I have a tough time managing what I already take let alone a couple more. I had a treatment on Friday so I went home took xyrem and had a wonderful restful night. Saturday morning was wonderful I woke up early and was a non stop ball of energy without ritalin!! I did not stop until 10pm - wow - what a great productive day!

Sunday was a different story- My neck was swollen and stiff - my sinuses clogged,ears ringing, migraine set in and I couldn't stay awake for more than 45 minutes at a time - ugh I hated that day. Nothhing worked. I struggled through work on monday and returned to the chiro on tuesday night. Gosh why can't all docs explain things like him! He explained to me that I need to pace my energy and completely OVER did it on Saturday and that I need to give my body time to catch up with the meds and changing hormones. So if I have a day full of energy I need to choose my tasks carefully and pace them out and do not attempt the house hurricane clean up in ONE day which basically is what I was trying to do.

I think that's why I am having such a hard time. I expect one day of energy to turn into 365 again.
I have to learn how to pace myself. At 39 who woulda thunk it- I have to learn to pace myself........such a big thing for a small phrase.

#2 jenji

jenji

    Member

  • Members
  • 187 posts
  • Gender:Female
  • Location:new york
  • Interests:the arts

Posted 17 December 2008 - 05:24 PM

Hey Shallow_water.

I can totally relate to this post, as it took me 39 years to figure out how to pace myself as well. However, I still occasionally find myself cramming every bit of work/running around/whatever into the days where I feel somewhat better; and then yes, crash--bigtime. It's kind of like I have to pay for doing too much, so if I get a lot done one day, then I'm predictably down for the next 2-3 days. It's just a fact. People find it hard to understand that when we feel somewhat well or what they might call "normal," the contrast from what our normal is remains so pervasive that we literally say to ourselves: wow, I feel fantastic! and then not only have an overwhelming urge to get things done, but a need, as most of our -get done- nonsense has been delayed and/or ignored b/c we've been too symptomatic to take care of them. I don't think most people consciously declare whether or not they feel well from one day to the next.

In fact, I've always made a distinct effort to inform those around me (family/friends) when I am feeling really well b/c it happens so rarely that I find it only fair that I mention the good, as much as I might mention the bad. I find that I feel "wow well" about 1-2x's every couple of months--usually for only a day at a time.

After dealing with this condition for over 15 years, I have finally found a somewhat decent way to defend and go about what it is I need to do in order to get through each day without guilt or second-guessing; however, it is a daily struggle and still there are many who do not understand and to explain remains futile.

By the way, what kind of chiro are you seeing? I'm just wondering b/c I had been going to a chiro about 10 years ago after I had a pretty bad car accident who focused on specific areas; he was a specific chiropractor and only adjusted at the cervical, neck area despite the location of any complaints. It worked for quite some time, however I had to go 3x's week and it soon became tiresome, as he was located 45 mins away. However, he would always stress that although the initial -crack- would indeed clear my sinuses, my brain fog, my aches, stiffness, pains and fatigue (and did it ever!), it would quickly come back, sometimes ten-fold within the next day or two. He called this rebound re-tracing; that your body has to work out the worst before it gets much, much better. Maybe that's part of the what you're experiencing? I mean, he was a little new age with his treatments and that's fine, but many folks at the time told me that he was probably just milking me for the money, especially since I was going 3x's/week. What they didn't know was that this wonderful man did all adjustments for free after my insurance coverage for adjustments ran out. He was very kind, dedicated and concerned about the wellness of his patients, so he wasn't taking me on some scam ride. He continued free treatments on me for about a year and asked for nothing in return.

As far as pills go, I'm a big critic of the pill-peddlers. My docs know that my last resort is to take a pill for any kind of issue that may spring up. When I first became ill, I was given every pill known to man, including antimalarials, steriods et al, as well as one doctor who suggested that I begin chemotherapy. Um, I didn't have cancer, umkay?

It has been my experience, as well as many others on this site, that our systems are quite sensitive to drugs and therefore certain drugs can sometimes make things worse in the long run. It's hard to predict; a process of elimination and experimentation, but I would highly recommend that you research any new meds and trust your own instincts when it comes to whether or not a drug may or may not be working for you. No one knows your body better than you do.

It's so ironic: most of us are such outgoing, proactive, overachievers who simply cannot grasp the art of pacing oneself b/c our instinct is to go, go, go.

best,
jenji

#3 shallow_water

shallow_water

    Member

  • Members
  • 75 posts
  • Gender:Female
  • Location:Pennsylvania
  • Interests:The lights of my life are God,my husband, my sons and of course my dog jake!

Posted 20 December 2008 - 04:34 PM

Thanks so much for sharing jenji. I have copied parts of a few of your posts and added them to a collage I have on my Narcolepsy wall. Insight from someone else helps me see outside my cube.

My chiro is awesome. He actually was my dad's chiro when my dad played college football 15 yrs ago ( at that time my dad was the oldest college ball player - then there's always one who just have to beat the record!) Anyway Dr. S also studies natra pathic medicine, he is just beginning this. He will Not do any manipulations on my neck because he feels that would make it worse. He has been doing cervical traction with great results so he ordered me one for home which I started this week and I am having tiny improvements. My ears started to ring again but I guess my body has to undo the damage in precise order.

I've been doing a bit better in the pacing dept. I also found that the ritalin LA makes me feel wired so I stopped that an added another dose of short ritalin to stay awake but I am feeling better. One vitamin I began taking is magnesium which has helped the pain in my knees and is better at keeping regular than raisin bran!

#4 jenji

jenji

    Member

  • Members
  • 187 posts
  • Gender:Female
  • Location:new york
  • Interests:the arts

Posted 21 December 2008 - 01:28 AM

One vitamin I began taking is magnesium which has helped the pain in my knees and is better at keeping regular than raisin bran!
[/quote]

I'm glad to hear you're feeling a bit better. I would also recommend CoQ10 and Flax seed oil if you are having joint issues. Flax seed will keep the pipes a'runnin as well and CoQ10 also can't exactly hurt with the memory issues we have with N.

Just a thought.

best,
jenji

#5 Mike M

Mike M

    Member

  • Members
  • 379 posts
  • Gender:Male
  • Location:Saint Paul, MN
  • Interests:Ultimate Frisbee, Literature, Film, Music, Narcolepsy, Education

Posted 21 December 2008 - 01:14 PM

jenji and shallow_water,

I loved all of your posts here. I too am a huge fan of holistic treatments and pacing. I regularly find myself taking one step forward and one step (or two to three steps) back. This summer was when I finally hit the wall of my own mindset. I had three separate times where I got physically ill for 3 days after pushing way past my limits on one day. After being more than frustrated, I finally started to get it through my head that pushing myself (something I have done all of my life) is one of the key reasons that I have been so sick. It is almost like I can draw energy from my immune system to overcome the narcolepsy, but the result is lots of other systems failing.

The good news is that I am getting better and better at living in the moment and staying grounded in my efforts. I still push too hard, far too often, but the degree of exertion is less. The highlight of my December is that, although I physically felt awful, I was mentally balanced. And, while I never tried to be super-human in my efforts at work or at home, I was relatively productive by doing a little bit here and a little bit there - always within my limited energy. Thank you both for sharing such cool thoughts and ideas.

#6 angellus

angellus

    Member

  • Members
  • 174 posts
  • Location:Atlanta, GA
  • Interests:Feeling well.

Posted 21 December 2008 - 03:07 PM

QUOTE (Mike M @ Dec 21 2008, 01:14 PM) <{POST_SNAPBACK}>
jenji and shallow_water,

I loved all of your posts here. I too am a huge fan of holistic treatments and pacing. I regularly find myself taking one step forward and one step (or two to three steps) back. This summer was when I finally hit the wall of my own mindset. I had three separate times where I got physically ill for 3 days after pushing way past my limits on one day. After being more than frustrated, I finally started to get it through my head that pushing myself (something I have done all of my life) is one of the key reasons that I have been so sick. It is almost like I can draw energy from my immune system to overcome the narcolepsy, but the result is lots of other systems failing.

The good news is that I am getting better and better at living in the moment and staying grounded in my efforts. I still push too hard, far too often, but the degree of exertion is less. The highlight of my December is that, although I physically felt awful, I was mentally balanced. And, while I never tried to be super-human in my efforts at work or at home, I was relatively productive by doing a little bit here and a little bit there - always within my limited energy. Thank you both for sharing such cool thoughts and ideas.


I have been going through the same thing, except overfueled with adderall, I have literally collapsed several times just to a shivering lump., The only thing i wanted to do is lay down.. and not sleep.. just lay there...until time the next day for another adderall..

Im at the point where I dont knopw what to do, I dont have a job, and rapidly loosing footing on keeping my residence. I feel so rotton and like a space alien most of the time.. just up and down during the day.. how the heck could I work like this? Im going to see a neurologist at the end of this month, just to get another opinion. Im thinking about just dropping the adderall, Im such a mess..I cant recognize the adderall helping me. I feel so bad all the time. If I dont get a handle on myself in the next couple of months, i will be moving in with my parents. Then Im sure they will try and keep me awake all day..lol grrrr.. that will be bad..

#7 angellus

angellus

    Member

  • Members
  • 174 posts
  • Location:Atlanta, GA
  • Interests:Feeling well.

Posted 21 December 2008 - 03:14 PM

QUOTE (Mike M @ Dec 21 2008, 01:14 PM) <{POST_SNAPBACK}>
jenji and shallow_water,

I loved all of your posts here. I too am a huge fan of holistic treatments and pacing. I regularly find myself taking one step forward and one step (or two to three steps) back. This summer was when I finally hit the wall of my own mindset. I had three separate times where I got physically ill for 3 days after pushing way past my limits on one day. After being more than frustrated, I finally started to get it through my head that pushing myself (something I have done all of my life) is one of the key reasons that I have been so sick. It is almost like I can draw energy from my immune system to overcome the narcolepsy, but the result is lots of other systems failing.

The good news is that I am getting better and better at living in the moment and staying grounded in my efforts. I still push too hard, far too often, but the degree of exertion is less. The highlight of my December is that, although I physically felt awful, I was mentally balanced. And, while I never tried to be super-human in my efforts at work or at home, I was relatively productive by doing a little bit here and a little bit there - always within my limited energy. Thank you both for sharing such cool thoughts and ideas.


I have been going through the same thing, except overfueled with adderall, I have literally collapsed several times just to a shivering lump., The only thing i wanted to do is lay down.. and not sleep.. just lay there...until time the next day for another adderall..

Im at the point where I dont knopw what to do, I dont have a job, and rapidly loosing footing on keeping my residence. I feel so rotton and like a space alien most of the time.. just up and down during the day.. how the heck could I work like this? Im going to see a neurologist at the end of this month, just to get another opinion. Im thinking about just dropping the adderall, Im such a mess..I cant recognize the adderall helping me. I feel so bad all the time. If I dont get a handle on myself in the next couple of months, i will be moving in with my parents. Then Im sure they will try and keep me awake all day..lol grrrr.. that will be bad..

#8 jenji

jenji

    Member

  • Members
  • 187 posts
  • Gender:Female
  • Location:new york
  • Interests:the arts

Posted 21 December 2008 - 03:53 PM

Angellus.

I'm sorry to hear that you're having such a rough go at it. This condition can be quite debilitating to be sure. Have you tried Concerta? I ask b/c I started on Concerta about five years ago, far before my N dx; my shrink put me on it for another reason (and no, I'm not bat$hit crazy, I just have artisitically inclined moods, aka bat$hit crazy wink.gif and the Concerta started to really give me a consistent kick in the pants sans the rollercoaster surge of frenetic energy to be followed by the amphetamine crash.

Now, I must admit that five years later the Concerta has about run itself out (I've gone from 4 years at 36mg to about 6 months at 54mg which is far too contrasting to my N, so I'm moving on to another drug), wherein my N has either gotten loads worse, or the drug simply isn't doing its magic anymore and I've become too tolerant of it; I would contend that it's a little bit of both, but mostly the latter. So, my doc is going to start me on Adderall sometime in the next few weeks, but I thought that I might mention Concerta to you b/c what works for one N may or may not work for another; that is, Adderall has been a fantastic remedy for many, while others like yourself have had much less success; sometime artificial fuels are just far too hard on our bodies/brains. I'm just wondering if Concerta might be a bit, I dunno, gentler for you?? If you're more than sure that Adderall isn't working for you (and if you re-read your post, you will see that you do seem to be more than sure) then why should you tolerate even another moment of it? At least if you go off of it you won't have to deal with the exhausting fx of the drug, as well as the N. Is there anything more frustrating that feeling worse on a drug that is supposed to make you function better? I say, no there isn't. But it happens and so we move onto another alternative.

I can more than tell by your post that you're really having a hard time and beating yourself up trying to find the answer; however if there's one thing we all have in common, or rather, one thing that I've noticed that we all seem to have in common, it's that we're resilient individuals who keep fighting through knee deep circadian mud to find the answer so that we might get on with it already, you know? So, keep posting, keep sharing b/c this forum will give you the support and feedback that will be proactive in your treatment, wherein friends, family and even many doctors may mean well (and many may not), but they simply don't get it b/c they aren't burdened with the daily struggle of it; the reality is that they just don't understand, which proves only to drain us even more in the end.

Perhaps you should talk to your doctors about cleaning your system of drugs before moving onto another drug? I've done that before and you'd be surprised how much the brain fog will lift depending on the circumstances. Although your life seems completely out of control do not give up on your own instincts b/c no one knows your system and body better than you do, not even the doctors.

You're doing the best you can and having struggled with this condition for over 15 years I have to tell you that the fact that you're still trying to find answers; still trying to get on with it, speaks volumes of the type of individual you are. You will find a way to get some relief, it just may not be on the time table for which you would prefer. But you know what? There's not much you can do about that except keep on searching for answers. I know it sounds ridiculous to say this b/c I've been there many, many times myself, but try to give yourself a break from worrying or at least schedule your worrying so that you're not completely overwhelmed with the possibilities all at once, as to do so is to shoot yourself square in the foot; N symptoms will flare bigtime.

You may say you don't know what to do anymore, but you're doing it already. You're seeing another neurologist at the end of the month and you're here looking for input. Give yourself some credit, there are many of non-N who would simply disintegrate into a puddle of puss if they had to weather even a moment of what we go through.

Keep on!

jenji

#9 too exhausted

too exhausted

    Member

  • Members
  • 96 posts
  • Location:UK

Posted 21 December 2008 - 03:56 PM

[
Do you think that you are getting relief from your chiropractor because you are taking xyrem. Therefore your muscles and nerves are able to heal with going into deep sleep. Its just that I was seeing an oestopath every two weeks for 8 months because I have severe back pain, aching muscles, collasping muscles etc. The treatments didn't work but now I take xyrem and I went back to see him. My siactic nerve which was trapped actually was better after the treatment. I told him that I had tried acupuncture and it made me feel worse. He said that you need energy for acupuncture for the energy to be channeled correctly and with me having no energy then it wouldn't work for me in my present state.
I know what you mean by having a good day then being in bed the next day or for several days. I had a good day (like you probably the second one this year) and started on hoovering the house etc. When I woke up after my first dose of xyrem I was in intense pain. My arms and legs felt like the nerves were on fire, I had hot, itchy, pains which felt like they were going to explode through my skin. I felt sick and wanted to rip my arms and legs off. The next day I was in bed all day.
If I try and do something one day which wears me out then I often pay for it two days later but it can be the next day. I get upset because whats the point of having a bit of energy and thinking you are capable of doing things when you have to pay the energy debt back two fold. I guess so we don't give up and hope for the day when our bodies get used to the meds (without side effects).
I suffer from sinusitis and tinnitus and it becomes worse or more noticeable when I am in bed. I massage my face to help drain my sinuses and pinch my nose and blow which seems to clear the ringing slightly. I can't find anything to stop my headaches. My headaches have got worse on a night time since being on the xyrem. It feels like I have a belt squeezing my brain and I get flashing lights, it lasts until I eventually fall asleep.
I am 39 aswel. I think that by the time I 'retire' I will have more energy and be able to keep up with the OAP's because surely by then a treatment or cure will be found.
Its hard pacing yourself because we aren't lazy and don't have time to have days without energy. I think its hard to get the balance when we don't have a gauge to measure our energy.

#10 shallow_water

shallow_water

    Member

  • Members
  • 75 posts
  • Gender:Female
  • Location:Pennsylvania
  • Interests:The lights of my life are God,my husband, my sons and of course my dog jake!

Posted 24 December 2008 - 10:20 PM

QUOTE (jenji @ Dec 21 2008, 03:53 PM) <{POST_SNAPBACK}>
I can more than tell by your post that you're really having a hard time and beating yourself up trying to find the answer; however if there's one thing we all have in common, or rather, one thing that I've noticed that we all seem to have in common, it's that we're resilient individuals who keep fighting through knee deep circadian mud to find the answer so that we might get on with it already, you know? So, keep posting, keep sharing b/c this forum will give you the support and feedback that will be proactive in your treatment, wherein friends, family and even many doctors may mean well (and many may not), but they simply don't get it b/c they aren't burdened with the daily struggle of it; the reality is that they just don't understand, which proves only to drain us even more in the end.
Keep on!

jenji



Angellus- we HAVE to take ONE day at a time - and some days it's even 1 hour at a time. I'm just beginning to learn this too hang in there we do understand and I could not have said it better than jenji!

#11 shallow_water

shallow_water

    Member

  • Members
  • 75 posts
  • Gender:Female
  • Location:Pennsylvania
  • Interests:The lights of my life are God,my husband, my sons and of course my dog jake!

Posted 24 December 2008 - 10:31 PM

QUOTE (too exhausted @ Dec 21 2008, 03:56 PM) <{POST_SNAPBACK}>
[
Do you think that you are getting relief from your chiropractor because you are taking xyrem. Therefore your muscles and nerves are able to heal with going into deep sleep.


~ I honestly think it was the other way around - having him work on my neck helped my xyrem work better and now the combo of the two is working. I just think it's going to take a long time for me to heal properly.~


I know what you mean by having a good day then being in bed the next day or for several days. I had a good day (like you probably the second one this year) and started on hoovering the house etc. When I woke up after my first dose of xyrem I was in intense pain. My arms and legs felt like the nerves were on fire, I had hot, itchy, pains which felt like they were going to explode through my skin. I felt sick and wanted to rip my arms and legs off. The next day I was in bed all day.
If I try and do something one day which wears me out then I often pay for it two days later but it can be the next day. I get upset because whats the point of having a bit of energy and thinking you are capable of doing things when you have to pay the energy debt back two fold. I guess so we don't give up and hope for the day when our bodies get used to the meds (without side effects).

~ YES I understand this!~


I suffer from sinusitis and tinnitus and it becomes worse or more noticeable when I am in bed. I massage my face to help drain my sinuses and pinch my nose and blow which seems to clear the ringing slightly. I can't find anything to stop my headaches. My headaches have got worse on a night time since being on the xyrem. It feels like I have a belt squeezing my brain and I get flashing lights, it lasts until I eventually fall asleep.

~ The chiro is working on my tinnitus , since doing traction it got worse and yesterday he began doing pressure point therapy I'm hoping it works~

I am 39 aswel. I think that by the time I 'retire' I will have more energy and be able to keep up with the OAP's because surely by then a treatment or cure will be found.
Its hard pacing yourself because we aren't lazy and don't have time to have days without energy. I think its hard to get the balance when we don't have a gauge to measure our energy.


~ I'm gonna stay 39 forever ~ forget about retiring I'll probably be 90 before I can! ~


The headaches you get from xyrem - are you drinking enough water during the day? I've read on other forums about the combo of potassium, calcium and magnesium because of the high salt content in xyrem. I don't take calium because it causes painful kidney stones and I get plenty of potassium in the fruit I eat so I did start magnesium, which is also helping with the muscle aches.

#12 too exhausted

too exhausted

    Member

  • Members
  • 96 posts
  • Location:UK

Posted 25 December 2008 - 05:19 PM

QUOTE (shallow_water @ Dec 25 2008, 03:31 AM) <{POST_SNAPBACK}>
~ I'm gonna stay 39 forever ~ forget about retiring I'll probably be 90 before I can! ~


The headaches you get from xyrem - are you drinking enough water during the day? I've read on other forums about the combo of potassium, calcium and magnesium because of the high salt content in xyrem. I don't take calium because it causes painful kidney stones and I get plenty of potassium in the fruit I eat so I did start magnesium, which is also helping with the muscle aches.


Thank you. I also read the posts about the combo and have been taking it. I drink loads of water because I have also had kidney infections and stones. I have had symptoms like cystitus since taking the xyrem. I used to go to the toilet about 10-12 times a night and I thought this was due to my interrupted sleep pattern. I thought everytime I woke up I went to the toilet. But upon taking the xyrem, before it has kicked in then I am going to the toilet 5-8 times. So my using the toilet isn't from waking up and I have been actually going to the toilet more since being on the xyrem. So I will cut out taking the calcium.
I cut out my dexedrine thinking this might be giving me headaches but my headaches became worse.

#13 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 873 posts
  • Gender:Not Telling

Posted 25 December 2008 - 10:48 PM

Too Exhausted: Headaches worse? Maybe it's withdrawal? Did you taper off the dexedrine?

Angellus: We are too much alike; well, maybe not in the freeballin' department. laugh.gif I don't know what I'd do if my husband weren't so patient with me. I'm sure I'd be out on the street. Answer my email.

I am so thankful for this thread.

Jenji, you put things into words that I have tried to express to my husband but I had problems with it. I read your post to
him and my mother-in-law (including Angellus' and a couple of others), and it obviously had an affect on them. I don't know if it was the words or if it was because it came from another person's mouth.

Anyway, thanks again everyone for being so open.