No Sympathy For Eds
Posted 03 January 2013 - 09:17 AM
Posted 03 January 2013 - 09:56 AM
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.
Posted 03 January 2013 - 10:33 AM
Posted 03 January 2013 - 07:33 PM
I understand where you are coming from. Don't worry.
Posted 03 January 2013 - 09:44 PM
It is hard for me to get started. And then I will always reward myself with a nap afterwards.
Posted 04 January 2013 - 12:31 AM
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!"
Posted 04 January 2013 - 02:45 AM