Exercise And Narcolepsy
Posted 13 December 2009 - 10:18 PM
I've never been much of an athelete but I've always been naturally slim (on the healthy side) with a good appetite. After being diagnosed with N, my body didn't change. A few years after being diagnosed, I started a serious workout (3-4 hours/day and 5 days/week) for a 2 months. I absolutely would not recommend it to anyone since it just asking for injury. I didn't question my trainer because I trusted that he knew what he was doing and I didn't but looking back now I should have. In any case, after 2 months I never felt better! I was toned and strong. And I felt my EDS improved. I went from 20 mg Ritalin SR and 20 mg Ritalin (and still struggling to stay awake) to taking 20 mg Ritalin SR and feeling pretty ok for most of the day.
I could never go back to that routine but anytime I could get myself to workout I really felt a lot better. And now I'm really at the lowest point of my health and highest in my weight. Holiday season sucks and winter makes me want to hibernate and grow my "winter coat" so its a real mental battle for me to get to the gym. Have you ever fallen asleep on the treadmill? Yep, if I get bored thats me... I keep telling myself that I need to break this bad cycle. So I was wondering how other PWN exercise, what they do, and how it effects their N?
Posted 14 December 2009 - 09:51 AM
Bottom line for me: I feel better when I exercise. Reality: it's very hard to do on a regular basis.
Boredom is a huge trigger for me as well. Plus I have rheumatoid arthritis, so I can't just go outside and run around for fear my knees will get angry. I will work out on the elliptical machine, and I also have some DVD/videos for exercise that I use in rotation to keep the interest going.
If you have to get on a treadmill or other machine, is it possible you can find a gym that has TVs either in the room or (even better) individual screen on the machine itself? This helps me because it gives me something to concentrate on so I don't get hypnotized by the timer and the repetitive sound of my footsteps. I try to schedule workouts around times that I know something I like will be on television--it's a double bonus, because 1) I'm more likely to get there on time so I don't miss the show, and 2) once there, watching the show makes the exercise less "painful". If it's an option, getting an ipod Nano where you can upload a favorite movie or TV show might also help because then you wouldn't be stuck trying to find a time you can work out that matches with a show you might like.
I really have to do my workouts first thing in the morning. It's the only time that I can be relatively sure that I'll get there and do it. By the time afternoon rolls around, there are too many excuses (work, errands, dinner), and with those on top of my fatigue, it's just too easy to say "forget it".
I do stress a bit about working out in the morning and getting to work on time--I"m lucky enough to be in a place where I can be flexible, but sometimes I still do get nervous.
Having a rigid schedule really helps, but a schedule is only as good as my willingness to follow it each day. If I fall off the schedule, things don't happen and I get more tired, and the fatigue just feeds on itself. Winter is tough because it's dark longer and your body is telling you to curl up under a blanket and not move. But, if you can get the momentum going again, you won't be sorry.
Some other options are: is there a sport or activity you like doing, or have always wanted to learn, that you could take lessons in? I used to do rock climbing lessons at a gym and it was a great workout, but I never felt like I was working out because I was concentrating on building the skill. It sounds like working with a trainer in the past was mostly positive (though perhaps not at such an intense rate). Maybe paying for a trainer or lessons in something will help motivate you to get out the door? When it's only ourselves, it's easy to put it off, promise to do it tomorrow, etc. But, if you have to meet someone at a specific time to do something you've already paid them for, it becomes much easier to actually do it, because you're accountable AND you want to get your money's worth.
These are just my ideas. Whatever you decide, know that I'm fighting the same battle too!
Posted 08 January 2010 - 09:46 AM
Posted 18 January 2010 - 11:08 PM
I play in the privacy of my own home and its actually fun. The stupid counter thing actually gives me attitude when I skip days! Grrr... I am addicted to the obstacle course game and snowball fight game (get those snowman!).
I highly recommend this for all!
Well I will start to train again but for me time is the issue! I leave home at 7am go to work come back at 6pm I still haven't had my supper yet! So after that I still have to do some cleaning, but anyways. What I want to start doing is that I have my good bike (a beautifull Devinci) that I put on a stand. So I can place the stand in front of the TV (and I live in an appartment so space is scarce here) when I get home. I did gain a couple of pounds but I want to keep them till the end of the winter because I had lost weight before winter started but I was so freezing that I didn't watch what I ate during the holidays and gained some back but I'm not shivering everytime I got out right now so hahaha I don't know what to do
Posted 19 January 2010 - 01:32 AM
Posted 31 March 2010 - 12:14 AM
Trick that worked: Although I have fallen off the fitness wagon of late....when I was going faithfully I used to trick myself. I would set the alarm early (which meant that I absolutely had to go to bed early not like now it is 11:30 pm) and drag myself out of bed. Then I would tell myself, you only have to put on your sweats and get into your car. If you don't feel like going after that you don't have too. Needless to say that once I got dressed and in my car to go I was off. I don't know why this worked for me. I guess it could be the fact that I still had an out if I needed it and all I had to commit to was getting dressed and going to my car.
Ya I sleep in my work out clothes so I have less of an excuse. After dropping off the kids at school I go to the gym and tell myself even if I only go sit in the spa... However that would mean changing into my swim suit. Crap better take a nap in my car. Wake up work out all done.
Posted 14 April 2012 - 02:13 PM
Posted 16 January 2013 - 12:23 PM
I currently go to a "gym" that only does one on one exercising. Every work out is with a instructor, all have at least a bachelor's level, many have a experts, so they all have an knowing of the system. I beginning going so that I could confirm to my physicians that a sedentary lifestyle is not the cause of my tiredness.
Posted 19 January 2013 - 02:09 PM
I don't mind working out; it makes me feel great, and I find that it's a great "me time" thing, since I'm so extroverted, and hate doing anything else alone. However, I will get in a good routine for a while then get really, really sick. Before I found I had N I was in a routine for a while of going to a gym 3 - 4 days a week, and working out for 1 or 2 hours. Nothing crazy, just walking on the track, exercise bike, treadmill, maybe some weights, then back to the track. I was getting into better shape and felt great... but then I got a sinus infection, which (naturally for me) lead to a respiratory infection. Quickly, it became Pneumonia and though the whole thing I spent on and off 2 weeks missing a day or two of work, then a full week out in bed with the Pneumonia. After I got better I started at the gym (the older people there missed me. ) and started my routine again eventually I got sick again and had to stop. Then my gym membership ran out and I got really busy working over the summer.
Since then, I found it's been really hard to work out. I'll do part of a Pilates video (which used to be no big deal to me) and then get super tired. Plus, when I started with my Nuvigil my apatite dropped and I went from eating 3 full meals, plus snacks a day to maybe 1 full meal and a few snacks a day (when I remind myself to eat.) It got to a point where, with out exercising, I lost 30 lbs in 5 or so months (huge for me, I've never been that successful at weight loss,) and my doctor told me to not work out, and watch my weight or we would have to switch meds. Well I've been able to maintain my weight fairly well now, but I'm afraid to start working out. :/
Posted 15 April 2013 - 05:04 PM
I've always been painfully non-athletic, but I liked going to the gym once in a while in college, when I could use the facilities for free. Now I can't really afford to pay for a gym membership, but I really like doing the original Jane Fonda workout tape, you can find it on Youtube. It's only 30 minutes, and it's a full body workout for which you don't need any special equipment. I can't always keep up, but it's fun and by the time I'm bored or tiring out with an exercise it switches to the next. I also really like using the Yoga Studio app for iPhone. I think it was $2.99 or less than that. It lets you mix your own sets of favorite poses or just choose from pre-made classes. The videos are nice looking and easy to follow.
Posted 03 May 2013 - 11:56 AM
I work out 4-5 times a week. Usually in the afternoon. It has been shown that working out in the afternoon hightens the body temperature, which promotes slow wave sleep. When I go a few days without working out I do not feel the same. Usually I feel MORE tired.