xchocoholic
Senior Member
- Messages
- 2,947
- Location
- Florida
Hi All,
Ok, so I've been working on healing my body since 2005 and even though I still run into problems from time to time, I've seen a slow but steady improvement. I still have food intolerances, petite mals, disabling OI and mild PEM compared to the total Zombie like PEM I had prior to July 2010. All of the remaining symptoms aren't nearly as bad as they were even 2 years ago.
My zombie like PEM went away back in July so I was walking for exercise but then figured out that my OI was probably causing me to experience an increase in petite mals aka staring episodes and slurred speech. And my OI wasn't getting any better from just walking either.
I started exercising for 2 - 4 hours a day on October 12 and it appears to be going pretty well. I'm terribly deconditioned from having disabling ME/CFS/FM, ataxia, OI and PEM for all these years so I'm doing most of these exercises while laying on my back or while sitting up.
My theory ... ... on exercising while laying down is based on the fact that my blood only circulates properly when I'm laying down so this is the only way I can rebuild my body. Muscles help our bodies circulate blood better so hopefully my OI should resolve this way too. Heck if I know though .. Pumping extra blood into my muscles, especially my heart and brain seems like a good idea.
I don't start excercising until I can tell that my body has recovered from OI. Meaning, I can take a deep breath without feeling any tightness in my chest and I no longer feel the blood rushing into my head. I'm assuming that my kidneys, liver, etc have the appropriate blood by then too. I noticed a couple of years ago that the ability to take a deep breath without feeling any tightness is the last thing I feel before I feel HEALTHY enough to stand up and function normally again. This can take 20 - 60 minutes for me ... usually 60 though. And because of my OI, I still have to lay down every 3 - 4 hours to feel healthy.
Since starting this, I've gone from barely lifting my head up off the floor for 1 - 2 seconds to 10 seconds. And I can do 20 girlly pushups whereas when I started I could barely do 1. I can do 100 side leg lifts per leg without taking a break now and I started at 5. The list goes on .... I even have some muscles now too ... Walking is much easier now that there are muscles too.
I still can't do a real sit up but I can do 10 if I use my arms for leverage. And my legs still get too fatigued to go up the stairs quickly. Those leg lifts where you lift both legs at the same time and hold it are still hard on me but I can hold that for 7 seconds now. I couldn't have done that at all a few years ago. In fact that was a test that I failed totally before I could walk again. I couldn't even think how to lift my legs then. If that makes sense ? Gluten ataxia probably ...
My question is ... Is exercising dangerous for someone like me ? I'm not sure if my body is healthy enough for this or if I'm setting myself up for cancer, stroke, etc etc ... I had an episode of severe head rushes where it felt like the blood was rushing into my head (like I suddenly went from standing up to doing a headstand) a couple of days ago but those passed within a couple of hours. I appear to be detoxing fine because I haven't had PEM or gotten sick yet ... kow ... As far as I can tell, I've been detoxing fine since my ability to sweat normalized.
Has anyone with my level of disability tried this ? It's a little scary ... thanks ... x
Ok, so I've been working on healing my body since 2005 and even though I still run into problems from time to time, I've seen a slow but steady improvement. I still have food intolerances, petite mals, disabling OI and mild PEM compared to the total Zombie like PEM I had prior to July 2010. All of the remaining symptoms aren't nearly as bad as they were even 2 years ago.
My zombie like PEM went away back in July so I was walking for exercise but then figured out that my OI was probably causing me to experience an increase in petite mals aka staring episodes and slurred speech. And my OI wasn't getting any better from just walking either.
I started exercising for 2 - 4 hours a day on October 12 and it appears to be going pretty well. I'm terribly deconditioned from having disabling ME/CFS/FM, ataxia, OI and PEM for all these years so I'm doing most of these exercises while laying on my back or while sitting up.
My theory ... ... on exercising while laying down is based on the fact that my blood only circulates properly when I'm laying down so this is the only way I can rebuild my body. Muscles help our bodies circulate blood better so hopefully my OI should resolve this way too. Heck if I know though .. Pumping extra blood into my muscles, especially my heart and brain seems like a good idea.
I don't start excercising until I can tell that my body has recovered from OI. Meaning, I can take a deep breath without feeling any tightness in my chest and I no longer feel the blood rushing into my head. I'm assuming that my kidneys, liver, etc have the appropriate blood by then too. I noticed a couple of years ago that the ability to take a deep breath without feeling any tightness is the last thing I feel before I feel HEALTHY enough to stand up and function normally again. This can take 20 - 60 minutes for me ... usually 60 though. And because of my OI, I still have to lay down every 3 - 4 hours to feel healthy.
Since starting this, I've gone from barely lifting my head up off the floor for 1 - 2 seconds to 10 seconds. And I can do 20 girlly pushups whereas when I started I could barely do 1. I can do 100 side leg lifts per leg without taking a break now and I started at 5. The list goes on .... I even have some muscles now too ... Walking is much easier now that there are muscles too.
I still can't do a real sit up but I can do 10 if I use my arms for leverage. And my legs still get too fatigued to go up the stairs quickly. Those leg lifts where you lift both legs at the same time and hold it are still hard on me but I can hold that for 7 seconds now. I couldn't have done that at all a few years ago. In fact that was a test that I failed totally before I could walk again. I couldn't even think how to lift my legs then. If that makes sense ? Gluten ataxia probably ...
My question is ... Is exercising dangerous for someone like me ? I'm not sure if my body is healthy enough for this or if I'm setting myself up for cancer, stroke, etc etc ... I had an episode of severe head rushes where it felt like the blood was rushing into my head (like I suddenly went from standing up to doing a headstand) a couple of days ago but those passed within a couple of hours. I appear to be detoxing fine because I haven't had PEM or gotten sick yet ... kow ... As far as I can tell, I've been detoxing fine since my ability to sweat normalized.
Has anyone with my level of disability tried this ? It's a little scary ... thanks ... x