6 replies to this topic

[corey91386]

EDS makes life very difficult at times. People don't seem to understand what it is like dealing with this condition. Even Doctors at time undermind it. I am on a recent rant because my family physician told me I need to force myself to exercise more often because I have gained a little weight. People cannot symphasize with what they haven't experienced/ don't understand. I'm trying to exercise but when I do my tiredness goes through the roof. Yea everyone experiences tiredness and yes they have to push throught it at times. this level of tiredness we feel isn't even comparable. I understand doctors have to stay up and fight through tiredness all the time by default because of their career. They are also making 150,000$ a year being tired and functionable. We deal with it every day with no relief for the majority of time. I'm just ranting because I am tired of being tired and people do not truly understand. I don't want to be lazy. There is a work ethic in my when I am awake!

[Hank]

EDS makes life very difficult at times. People don't seem to understand what it is like dealing with this condition. Even Doctors at time undermind it. I am on a recent rant because my family physician told me I need to force myself to exercise more often because I have gained a little weight. People cannot symphasize with what they haven't experienced/ don't understand. I'm trying to exercise but when I do my tiredness goes through the roof. Yea everyone experiences tiredness and yes they have to push throught it at times. this level of tiredness we feel isn't even comparable. I understand doctors have to stay up and fight through tiredness all the time by default because of their career. They are also making 150,000$ a year being tired and functionable. We deal with it every day with no relief for the majority of time. I'm just ranting because I am tired of being tired and people do not truly understand. I don't want to be lazy. There is a work ethic in my when I am awake!

I have found exercise to be really helpful in countering my EDS and helping me to sleep at night. It is a hard push for sure at first, but over time the benefit is there. At the end of the work day has worked best for me to exercise, then dinner. Any exercise helps get oxygen moving to my brain and it helps.

I strongly agree that few people- including doctors- have any understanding of EDS. It is not what they experience- it is Excessive.

I will do anything that benefits me, including exercise. Right now, I am not exercising because I am trying to delay a surgery. I have less energy when I do not exercise and I feel it. I also know that when I return to exercise, I will face the same obstacle you are facing now. Starting and slowly building a routine of exercise is hard.

I strongly believe that PWN have to work harder at almost everything- so that is my lot in life. If I have to try hard at everything, exercise just goes on the list. Consider the REM runner blog for some encouragement. Consider starting small and building gradually. A small amount at the right time of day for you could yield some benefits you did not think were achieveable.

[DeathRabbit]

Whenever anyone without a sleep disorder tries to say they know what it's like to be this tired, I'm like "Oh really? I get about half an hour of SWS a night normally without meds. So for you, how about you try sleeping only 3 hours a night for the next 6 months and then maybe I'll listen to what you have to say." I word it nicer than that, but once I start talking in those terms, they begin to comprehend a little bit better the magnitude of my problem.

[dormir]

So many people don't understand this. I was told I was lazy most of my life. Now I'm lazy and imagining things. I do what I can to be alert (good diet, regular exercise, avoiding caffeine and alcohol, sleeping consistently at the same time, good sleep environment), but it's not enough. I could sleep for 14 hours a day and I am still exhausted. When I get less than 10 hours of sleep, I can't function well because I'm so foggy.

I understand where you are coming from. Don't worry.

[Asleeper]

I find it easiest to exercise if I am doing something I really enjoy and not just going through some type of boring repetive motions. I do not even think of falling asleep when bombing down a ski slope. If I am hiking thorough a beautiful landscape I can go for miles. Some good conversation along the way also helps too.
It is hard for me to get started. And then I will always reward myself with a nap afterwards.

[munky]

I'm terrible about exercise. I hate going to the gym. But two summers ago, I decided I wanted to play rugby, despite having never played a team sport--or, really, a sport at all--ever before in my life. Hauling my tired butt out of bed early to go to practice before work several times a week was near impossible--but I forced myself to do it. Why? Because I had so very much fun at the first practice, and I felt so ... awake and alive afterward! It was a feeling that only lasted a couple of hours, but it was worth it--even if I didn't recognize the "awake" feeling for what it was, at the time. And playing in the summer 7s tournaments was the same way, even though I suck.

Couldn't play last summer for a couple of reasons. One, I'd gone back to school and was in class until noon every weekday after work. Two, I'd moved. I bought a house and property that's perfect for me--middle of nowhere, lots of trees, few neighbors--but it's 40 miles northwest of town, and practice was about 10 miles southwest of town. There was no way I could work, go to school, and get to practice. Heck, even just getting up early enough to get down to practice before work would kill me, without the classes. So, no more rugby for me.

Now, most of my exercise is home chores. I replaced all the flooring in my house--took a while, but pretty good exercise while it lasted. Now I'm working on cleaning up all the deadwood in the woods around my house. Previous owners apparently never bothered, and it needs a lot of work. Even more, now, after a major windstorm followed by a massive snowstorm. All that deadwood is a fire hazard, left lying in the woods ... but the bonfire it'll make when it's been collected and dried will be pretty awesome! And soon, there'll be the garden to get going--Mom will do the planting and most of the caretaking, but the heavy work of tilling, amending the soil, and building the raised beds will be mine. And then I'll be building a deck and a small porch, repairing or replacing the front porch, and building a new chicken coop/pen. So, for now, my to-do list is my exercise.

Still, I'm lucky my mother understands--she's narcoleptic, too. No one else really does, though they try. One thing I never hear from friends and family anymore is the phrase, "I'm so tired!"

[lkl]

My local doctor was asking about my exercise not that long ago too, and I made the mistake of telling him that sometimes I am too sleepy to go to my weekly Yoga class, that I like going to. He said that if I don't keep fit, then I will feel more tired. And I had just finished telling him, that I also work to walk each day (which is 1.3km there, and another 1.3km back home). At the time I was too tired to react to the statement. But later I was really annoyed, and thinking I am keeping fit, and if I'm too sleepy to drive to Yoga, then I am not going to risk falling alseep driving, just to get some more exericse, and end up falling alseep while I'm in the class. Most weeks I can get there, but there are some weeks I just can't. It doesn't help that I don't have a diagnosis of anything yet, because the only place I can't sleep is at the sleep centre.