xtra big internet hugs heading your way. (Since it's virtual I feel like it's OK to squash you with a big bear hug LOL) Yay you for making it through the week!
Thank you for your kindness, Gina :) and thanks for taking the time to check out one of my chronic illness videos, too. Thank goodness for good books when bad weeks like this happen!
Sorry you are having to deal with this. I know it is draining and discouraging even though you have been through it before. Sending good thoughts and prayers your way ☀️
My heart goes out to you--this is what my life looks like most days. It is a good day if I get to sew a bit. I know others have it so much worse, this is about the limit of worse I can handle. Here is to better days!
I'm so sorry to hear you're that severe, Andee. Have you tried any treatments yet? Over the past 20 years, we've discovered quite a few treatments that have helped a LOT (links up in the Notes above), which is why a crash this bad and lasting this long is so rare for me - and frustrating. I'd made so much progress! My earlier vlogs or my Day in the Life video show better how my life usually is - a mix of light activity and rest. I'm glad you can sew and enjoy that! And yes, here's to better days!
@@SueJacksonDE For the first two years I was working full time and sleeping a lot. It was pretty miserable but I thought it would go away eventually. I had reactivated EBV which morphed into CFS/ME but since I was dx w Pernicious Anemia and later PPMS it took awhile for me to figure out CFS/ME. Also took awhile for me to read and research w comprehension since I was too tired to comprehend things. I take lots of supplements and a few help a little which makes a big difference. Have seen many doctors, none of which have a clue. Naturopath was sure I also had lyme, which I did not. I am up out of bed two days a week w my just turned two grandaughter--I am mostly reating the other days as I think that those two days are too much. I do not want to give them up though (I used to do three days when she slept more).
@@andeeheartsbooks7447 Awww, two years old is such a great age! Glad you can enjoy that time with her. I highly recommend you at least try treating OI and immune dysfunction - those two things alone were life-changing for my son and I, allowing us to live semi-normal lives. He's actually working almost full-time now (he's had ME/CFS and 3 tick infections for 18 years), which is miraculous! Check the Effective Treatments link above.
@@SueJacksonDE I had a table tilt test and had high bp during it...doctor says there is no agreed upon definition for orthostatic hypertension so he was no help.
@@andeeheartsbooks7447 Doesn't sound like that doctor knew much about OI and its various forms - BP going up is more unusual for us but not unheard of ... and definitely still treatable! What did your HR do during the test? I know you said you're comfortable taking supplements, so one thing you can try on your own is inosine - it's a supplement that helps to normalize the immune system ... and that helps with ALL symptoms! It gives my son and I a lot more energy and stamina and reduces the exertion intolerance so we can do more. It's one of the treatments that has helped us the most, and it's cheap and readily available. Here's more info - if you are interested (no pressure - I know everyone is different) and enjoy that granddaughter! : livewithcfs.blogspot.com/2014/04/imunovir-update-and-inosine.html
Hi Sue, I am sorry your crash is so awful 😞. Is it terrible that your videos are making me feel sane? My crashes are similar - it's so hard to rest aggressively. Sadly, it's good to know I'm not alone.
No, not terrible at all!! I'm so glad my videos are helping you (though sorry you're in the same boat). It IS good to know we are not alone - thanks for reaching out and taking the time to leave a comment.
Yes, far more food sensitivities than I thought! I've know for almost 20 years that I developed a dairy intolerance when I got ME/CFS (about 30% of us do), and I suspected it was more than just lactose since Lact--Aid only helps a little. I recently did food intolerance testing and was surprised that a bunch of stuff showed up that I was unaware of. Luckily, most of them showed up as mild. But egg whites were on the list, and I was eating eggs every day! That's one tip from my doctor - keep a good variety in my diet to prevent intolerances from developing or worsening. And yeah, the dairy was lactose plus whey plus casein. Funny you mentioned music because with all these old Grey's Anatomy episodes I've been watching, I was reminded of how much I love their soundtracks from each season - I have a bunch of the albums, so I started relistening to them today.
Hi Sue, you are in my thoughts and prayers. Please take care of yourself. Send you a gentle hug 🤗
Thank you, Charmaine - I appreciate that.
Thinking of you with love, Sue. Hope you feel better.
Thank you, Debbie!
xtra big internet hugs heading your way. (Since it's virtual I feel like it's OK to squash you with a big bear hug LOL)
Yay you for making it through the week!
Thank you for your kindness, Gina :) and thanks for taking the time to check out one of my chronic illness videos, too. Thank goodness for good books when bad weeks like this happen!
Sorry you are having to deal with this. I know it is draining and discouraging even though you have been through it before. Sending good thoughts and prayers your way ☀️
Thank you! Appreciate the kind thoughts.
My heart goes out to you--this is what my life looks like most days. It is a good day if I get to sew a bit. I know others have it so much worse, this is about the limit of worse I can handle. Here is to better days!
I'm so sorry to hear you're that severe, Andee. Have you tried any treatments yet? Over the past 20 years, we've discovered quite a few treatments that have helped a LOT (links up in the Notes above), which is why a crash this bad and lasting this long is so rare for me - and frustrating. I'd made so much progress! My earlier vlogs or my Day in the Life video show better how my life usually is - a mix of light activity and rest. I'm glad you can sew and enjoy that! And yes, here's to better days!
@@SueJacksonDE For the first two years I was working full time and sleeping a lot. It was pretty miserable but I thought it would go away eventually. I had reactivated EBV which morphed into CFS/ME but since I was dx w Pernicious Anemia and later PPMS it took awhile for me to figure out CFS/ME. Also took awhile for me to read and research w comprehension since I was too tired to comprehend things. I take lots of supplements and a few help a little which makes a big difference. Have seen many doctors, none of which have a clue. Naturopath was sure I also had lyme, which I did not. I am up out of bed two days a week w my just turned two grandaughter--I am mostly reating the other days as I think that those two days are too much. I do not want to give them up though (I used to do three days when she slept more).
@@andeeheartsbooks7447 Awww, two years old is such a great age! Glad you can enjoy that time with her. I highly recommend you at least try treating OI and immune dysfunction - those two things alone were life-changing for my son and I, allowing us to live semi-normal lives. He's actually working almost full-time now (he's had ME/CFS and 3 tick infections for 18 years), which is miraculous! Check the Effective Treatments link above.
@@SueJacksonDE I had a table tilt test and had high bp during it...doctor says there is no agreed upon definition for orthostatic hypertension so he was no help.
@@andeeheartsbooks7447 Doesn't sound like that doctor knew much about OI and its various forms - BP going up is more unusual for us but not unheard of ... and definitely still treatable! What did your HR do during the test? I know you said you're comfortable taking supplements, so one thing you can try on your own is inosine - it's a supplement that helps to normalize the immune system ... and that helps with ALL symptoms! It gives my son and I a lot more energy and stamina and reduces the exertion intolerance so we can do more. It's one of the treatments that has helped us the most, and it's cheap and readily available. Here's more info - if you are interested (no pressure - I know everyone is different) and enjoy that granddaughter! : livewithcfs.blogspot.com/2014/04/imunovir-update-and-inosine.html
Hi Sue, I am sorry your crash is so awful 😞. Is it terrible that your videos are making me feel sane? My crashes are similar - it's so hard to rest aggressively. Sadly, it's good to know I'm not alone.
No, not terrible at all!! I'm so glad my videos are helping you (though sorry you're in the same boat). It IS good to know we are not alone - thanks for reaching out and taking the time to leave a comment.
Sue, do you have sensitivities to certain foods? Listening to music really helps me when I’m stuck on the couch. Wishing you the best.
Yes, far more food sensitivities than I thought! I've know for almost 20 years that I developed a dairy intolerance when I got ME/CFS (about 30% of us do), and I suspected it was more than just lactose since Lact--Aid only helps a little. I recently did food intolerance testing and was surprised that a bunch of stuff showed up that I was unaware of. Luckily, most of them showed up as mild. But egg whites were on the list, and I was eating eggs every day! That's one tip from my doctor - keep a good variety in my diet to prevent intolerances from developing or worsening. And yeah, the dairy was lactose plus whey plus casein. Funny you mentioned music because with all these old Grey's Anatomy episodes I've been watching, I was reminded of how much I love their soundtracks from each season - I have a bunch of the albums, so I started relistening to them today.