So sorry things are so crappy right now. It is so hard when things get worse than our already not so great energy levels usually are. I have many days like these and understand. Gentle virtual hugs to you and the hope that soon things will be better!

@SueJacksonDE

Жыл бұрын

Thanks for your kindness and understanding, Andee - it helps just to know someone "gets it"! Today is a but better - in the recliner instead of flat in bed or the couch - baby steps!

Hi Sue - I watched to the end. So sorry you're having difficulties with your health again after a mostly-better week. Glad you're resting and taking such good care of yourself. I've never even heard of Samento before. Thanks for telling us about it. I've had a very low energy year. Like you, I get very worn out after a shopping trip. I try to go into town for errands only once weekly. Glad you got to spend some time in the garden between crashes, when you had energy for it. I haven't been able to do that much this year.

@SueJacksonDE

Жыл бұрын

Thank you, Linda, for your kindness. I'm so sorry to hear you have been struggling, too. I am finally semi-upright today and out of bed, but still low energy and achy, so trying to take it very easy and VERY slow!

Sorry that you hit a bump in the road this week. Chin up. Tomorrow will be better.

@SueJacksonDE

Жыл бұрын

Thanks, Debby!

Hi Sue, glad that you were feeling better early in the week. I had a hard week, I had to call the doctor yesterday and my heart beat was really high and was feeling awful but thanks God and the Blessed Virgin Mary I am better today. I know how you feel it frustrating and I am dealing with depression because I want to do things and simple can't. Hope you will feel better. Please take care 💛

@SueJacksonDE

Жыл бұрын

That is so scary when the HR goes crazy like that!! Have you tried any treatments for OI yet? I take low-dose extended-release beta blockers every night before bed, so my HR and BP are pretty stable now - it helps with everything! You don't realize how much OI is behind so many symptoms until you treat it and see the dramatic improvement. That's what's worked for me, but there are dozens and dozens of different treatments to try. I'm so sorry you've been struggling, too. I am in my recliner today, instead of flat in bed or on the couch, so that's an improvement, but still trying to take it easy.

@charmainesaliba5546

Жыл бұрын

@@SueJacksonDE When I told my doctor about OI he said I don't know what it is, which makes me doubt how good he is. I am looking for a new doctor hopefully a doctor who knows his job and takes me seriously. I have a bad experience with doctors that everytime tell me that is all in my head. Sometimes, I feel frustrated but I have to "fight" and not give up. I am so glad that I found your channel. You are an inspiration and gives me so much courage. Thanks Sue and really hope that you will feel better. 💛

@SueJacksonDE

Жыл бұрын

@@charmainesaliba5546 Ugh - so sorry to hear that. The great thing about OI is that it is easily measurable (as opposed to the rest of this crazy illness!), so no one can say it's all in your head. But the fact that your doctor was uninterested in following up does sound like you need a new one. I know what a pain that is. When you find one, share this article with him/her - it's perfect for doctors - brief, to the point, and includes scientific references at the end. And I'll add a second comment with a link for finding a new doctor. Here's Part 1 of the OI article on Diagnosing (there's a part 2 on Treating): suzanjackson.homestead.com/PH_-_Diagnosing_OI.pdf

@SueJacksonDE

Жыл бұрын

@@charmainesaliba5546 This post includes lists of top ME/CFS experts around the world, second-tier doctors who treat certain aspects of ME/CFS, links to doctor databases, and tips on finding a local primary care doctor who can help you: livewithcfs.blogspot.com/2018/04/finding-doctor-for-mecfs.html

@charmainesaliba5546

Жыл бұрын

@@SueJacksonDE thank you so much Sue really I appreciate your support this means a lot to me.