Paul It was such a delight to see a video from you. It is one of the hardest aspects with M.E. to learn when to stop and not keep pushing. I have found also the sensory overload to be happening more and more with me. Thanks for making this and stay well.
Thanks v much for ur reply Paul! U have said so many impt. things. It is one of the hardest things to do in life, to rest when one doesnt want to. Before we r ill with ME, & we get a flu, we expect to get better & then get on with our lives. Then, when we have ME and r NOT severe & bedbound, IF we have a moment or day or more where we feel better, we want to enjoy it & accomplish things. Our natural drive or motivation kicks in, we desire to do and be as we were. Not much space here to write! :)
Thank you Sandra. It has taken me a long time to accept that I need to rest more. I do so little already compared to what I used to be able to do, but even the restrictions my illness enforces on me has not been enough. I've still tended to push myself when my body has been saying stop. I have to watch myself because the tendency to over do things is always there.
Thank you Sue, I'm glad you have found them helpful. Finding stability is very difficult but is worth it. The problem with this illness is you can do all the right things and still suffer an increase in symptoms, which can be very frustrating. I look forward to seeing your new videos.
Great to see U Paul! Good for U! Resting is what I've been trying to write 2 U about. Its too late for me, 28 years, but U r still in the early years! I didnt get to rest, due to disbelief & a child to raise. Its my humble opinion that if u rest enough, u might have a remission or some healing. Discipline is key, hope u can find a way to do it! Save the good days to heal, for a time, & see what happens. Dont weed the garden, etc., on a good day LOL. Let us hear from U!! Love & Hope 4 U Friend!!
Thank you so much for making this video which I know has eaten into your activity time. Like yourself I am trying to incorporate rests into the day, even when I feel relatively ok as it does give stability. I also agree with computer time being as tiring as exercise as it often leads to relapses. You have been such an inspiration to me with your videos. I hope to make some more of my own in the summer, as there are some things I want to say which may help some. Sending you my best wishes Sue
Not only are we affected by lights,sounds but smells(laundry section in store the worst) and foods also can trigger a flare. I have cut down my time also on computer. Have you tried darkening the screen? One of my passions was reading,sadly it's become harder also.....Glad to hear your Kindle is making it easier for you. Keep resting it is key with this disease.
Believe me Paul, I understand the frustration! But O yes, it is better than making yourself more ill. Only when you think you should, move about enough to keep strength & stay mobile. But other than that, if you see this is keeping your symptoms more under control, maybe a little more rest, could result in an improvement in time? Some have had it happen, getwellfromme is one example. I do so very much want you to get better, I cant say how much. I still have hope for those in the early years.
One of the big differences between M.E. and depression is motivation. People who are depressed have little or no motivation and don't want to do things, whereas people with M.E. usually want to do things and tend to push themselves too hard. The other thing is physical activity can help people with depression, but physical activity actually makes people with M.E. more sick. Having to stop an activity before you've finished it is very frustrating, but it is better than making yourself more ill.
I was trying to go to sleep :/ and thinking about a lot of things, because my body wouldnt cooperate, and then, the last thing I said to you popped in my head. I thought GOOD GRIEF that didn't really say at all what I was thinking!! I really shouldnt post when so foggy! I removed it, (I think ?) and I'll try again when able to express my thoughts more clearly. :) Take care!
I have wondered what would happen if I still kept my activity low during these times, but it is difficult not to indulge in activities that are usually beyond me. I did keep up the afternoon rest during my latest remission, but it gradually came to an end after about 6 days. I am now as bad as I was before it happened. I'm just hoping I don't continue to slide. So I'm doing less and resting more. I never offended by helpful comments Sandra, it's a difficult illness to make sense of. :0)
I hadn't realized just how much I'm affected by sensory overload. I only noticed it when I started to have regular rest periods in my day. When I say rest I mean laying down in a darkened room with my eyes closed doing nothing. The computer is definitely a source of overload.
I have been really well for the last 4 days. it's another one of my mini remissions. I'm walking normally, no post exertional illness, and very little brain fog. I am still getting involuntary movements. I'm doing a lot, lot more than usual but I'm still making sure I completely rest for a couple of hours. It will be interesting to see how long it lasts this time. A couple of times I've thought it was coming to an end, but have been fine after resting. :0)
I do have orthostatic intolerance, but not hypotension. I was diagnosed with hypertension a couple of years before I became ill. my heart rate does go very high, very quickly when I am upright. I did try and use a heart rate monitor to try and stay within my anarobic threshold but gave up as the smallest bi of activity would put me over the limit, just walking to the bathroom would set off the alarm. Getting a doctor to look at this is virtually impossible in the UK.
A.R.T.-aggressive rest therapy, is not the same thing as needing to lie down due to neurally mediated hypotension and/or postural orthostatic tachycardia syndrome. Its part of pacing and letting the brain & body systems recover. I read about this years ago, thought I'd add cause of what maryhewc said, hope its ok no offense intended! :) Ive found silicone ear plugs to be helpful, not only for loud noise reduction but also for a calmer feeling, more focus, when resting or not! Just trying 2 help.
I used to have those. They are sort of stunning! I wanted to do things I used to always do & I too wondered if I was getting well. But now, I wish I hadnt done a lot more during them, but I had a child to raise, bless her heart. Have u yet wondered what would happen if u did Not do a lot more? If the resting helps with symptom control, then maybe more rest, even during those, might in time, cause some real healing??? Just trying 2 help! :) I hope u r never offended!! I wish I could make a video!
Have you been able to get checked out for neurally mediated hypotension and/or postural orthostatic tachycardia syndrome? It's probably why you have to lie down so much. There's been studies showing that almost all people with ME also have one of those, and it should be easy to document even for mentally deficient UK doctors following the NICE guidelines regarding ME.
Paul It was such a delight to see a video from you. It is one of the hardest aspects with M.E. to learn when to stop and not keep pushing.
I have found also the sensory overload to be happening more and more with me.
Thanks for making this and stay well.
Thanks v much for ur reply Paul! U have said so many impt. things. It is one of the hardest things to do in life, to rest when one doesnt want to. Before we r ill with ME, & we get a flu, we expect to get better & then get on with our lives. Then, when we have ME and r NOT severe & bedbound, IF we have a moment or day or more where we feel better, we want to enjoy it & accomplish things. Our natural drive or motivation kicks in, we desire to do and be as we were. Not much space here to write! :)
Thank you Sandra. It has taken me a long time to accept that I need to rest more. I do so little already compared to what I used to be able to do, but even the restrictions my illness enforces on me has not been enough. I've still tended to push myself when my body has been saying stop. I have to watch myself because the tendency to over do things is always there.
Thank you Sue, I'm glad you have found them helpful. Finding stability is very difficult but is worth it. The problem with this illness is you can do all the right things and still suffer an increase in symptoms, which can be very frustrating.
I look forward to seeing your new videos.
Great to see U Paul! Good for U! Resting is what I've been trying to write 2 U about. Its too late for me, 28 years, but U r still in the early years! I didnt get to rest, due to disbelief & a child to raise. Its my humble opinion that if u rest enough, u might have a remission or some healing. Discipline is key, hope u can find a way to do it! Save the good days to heal, for a time, & see what happens. Dont weed the garden, etc., on a good day LOL. Let us hear from U!!
Love & Hope 4 U Friend!!
Thank you so much for making this video which I know has eaten into your activity time. Like yourself I am trying to incorporate rests into the day, even when I feel relatively ok as it does give stability. I also agree with computer time being as tiring as exercise as it often leads to relapses. You have been such an inspiration to me with your videos. I hope to make some more of my own in the summer, as there are some things I want to say which may help some.
Sending you my best wishes
Sue
Not only are we affected by lights,sounds but smells(laundry section in store the worst) and foods also can trigger a flare. I have cut down my time also on computer. Have you tried darkening the screen?
One of my passions was reading,sadly it's become harder also.....Glad to hear your Kindle is making it easier for you. Keep resting it is key with this disease.
Believe me Paul, I understand the frustration! But O yes, it is better than making yourself more ill. Only when you think you should, move about enough to keep strength & stay mobile. But other than that, if you see this is keeping your symptoms more under control, maybe a little more rest, could result in an improvement in time? Some have had it happen, getwellfromme is one example. I do so very much want you to get better, I cant say how much. I still have hope for those in the early years.
One of the big differences between M.E. and depression is motivation. People who are depressed have little or no motivation and don't want to do things, whereas people with M.E. usually want to do things and tend to push themselves too hard. The other thing is physical activity can help people with depression, but physical activity actually makes people with M.E. more sick. Having to stop an activity before you've finished it is very frustrating, but it is better than making yourself more ill.
I was trying to go to sleep :/ and thinking about a lot of things, because my body wouldnt cooperate, and then, the last thing I said to you popped in my head. I thought GOOD GRIEF that didn't really say at all what I was thinking!! I really shouldnt post when so foggy! I removed it, (I think ?) and I'll try again when able to express my thoughts more clearly. :) Take care!
I have wondered what would happen if I still kept my activity low during these times, but it is difficult not to indulge in activities that are usually beyond me. I did keep up the afternoon rest during my latest remission, but it gradually came to an end after about 6 days. I am now as bad as I was before it happened. I'm just hoping I don't continue to slide. So I'm doing less and resting more. I never offended by helpful comments Sandra, it's a difficult illness to make sense of. :0)
I hadn't realized just how much I'm affected by sensory overload. I only noticed it when I started to have regular rest periods in my day. When I say rest I mean laying down in a darkened room with my eyes closed doing nothing. The computer is definitely a source of overload.
I have been really well for the last 4 days. it's another one of my mini remissions. I'm walking normally, no post exertional illness, and very little brain fog. I am still getting involuntary movements. I'm doing a lot, lot more than usual but I'm still making sure I completely rest for a couple of hours. It will be interesting to see how long it lasts this time. A couple of times I've thought it was coming to an end, but have been fine after resting. :0)
I do have orthostatic intolerance, but not hypotension. I was diagnosed with hypertension a couple of years before I became ill. my heart rate does go very high, very quickly when I am upright. I did try and use a heart rate monitor to try and stay within my anarobic threshold but gave up as the smallest bi of activity would put me over the limit, just walking to the bathroom would set off the alarm. Getting a doctor to look at this is virtually impossible in the UK.
A.R.T.-aggressive rest therapy, is not the same thing as needing to lie down due to neurally mediated hypotension and/or postural orthostatic tachycardia syndrome. Its part of pacing and letting the brain & body systems recover. I read about this years ago, thought I'd add cause of what maryhewc said, hope its ok no offense intended! :) Ive found silicone ear plugs to be helpful, not only for loud noise reduction but also for a calmer feeling, more focus, when resting or not! Just trying 2 help.
I used to have those. They are sort of stunning! I wanted to do things I used to always do & I too wondered if I was getting well. But now, I wish I hadnt done a lot more during them, but I had a child to raise, bless her heart. Have u yet wondered what would happen if u did Not do a lot more? If the resting helps with symptom control, then maybe more rest, even during those, might in time, cause some real healing??? Just trying 2 help! :) I hope u r never offended!! I wish I could make a video!
Have you been able to get checked out for neurally mediated hypotension and/or postural orthostatic tachycardia syndrome? It's probably why you have to lie down so much. There's been studies showing that almost all people with ME also have one of those, and it should be easy to document even for mentally deficient UK doctors following the NICE guidelines regarding ME.