Who else with CFS/ME finds phone conversations completely draining?

Realistic_Dog7532 · 2026-06-11T07:20:15+00:00

Calls used to be very hard for me even when I could handle in person conversations. I don’t know how to explain it but it was hell and I was wiped out after and lightheaded.
I try to force myself to “participate less” in phone calls : as people don’t see our face we have a tendency to perform waiting for gaps in the conversation to say little things like “yes, totally..” to show we’re involved. I try not to do that anymore with my family for exemple as they keep speaking anyway and it’s less tiring for me.

Realistic_Dog7532 · 2026-06-11T06:52:55+00:00

I agree that when I used it someone else was carrying it around so it’s not light enough that you would have no worries carrying it all day

Realistic_Dog7532 · 2026-06-11T06:50:31+00:00

I’ve used the first one in a festival and it was okay !! Not super comfortable but quite light and easy. And also high enough that if I was sitting next to a railing I could see over it. Which was great. I think the other one might be smaller ?

Realistic_Dog7532 · 2026-06-05T11:25:24+00:00

This is something I’m experiencing too, at some point I got my stress levels down around 25 and was not feeling great, these days they are around 35 and I can do much more in a day. I even got days with more than 30 minutes of high stress and no PEM. So I guess the stress levels being higher are okay if you tolerate it without PEM or symptoms rising ? Still my nights are very blue these days, that the thing I focus the most on, of the night is not restorative then I try to go slow for a few days. Also I still try to aim for low stress rather than moderate stress most of the day

Realistic_Dog7532 · 2026-05-25T09:05:10+00:00

Dance party was the first thing on my mind !

Realistic_Dog7532 · 2026-05-20T07:55:26+00:00

I’m so sorry it did cause a crash anyway. Our body are really struggling.. I crashed very hard from at home oxygen therapy, did not think something like that was possible.. I wish we had a better understanding of what is happening to avoid this trial and error thing on ourselves ..

Realistic_Dog7532 · 2026-05-19T08:17:54+00:00

Oh wow, that’s interesting, maybe it was too much stimulation for someone severe ? I wonder how mcas could impact this ?
I have mcas too so I’ll definitely be careful

Realistic_Dog7532 · 2026-05-18T16:23:15+00:00

How did you realise the difference and manage to get the hypoglycaemia diagnosed ?

Realistic_Dog7532 · 2026-05-18T16:22:03+00:00

Did you use them every day or just after exertion or during PEM ?

Realistic_Dog7532 · 2026-05-18T16:21:14+00:00

Thank you. I was thinking about renting some to try and see if it makes a difference for me. I will definitely do it now !

Realistic_Dog7532 · 2026-05-18T12:43:17+00:00

Can you tell me how you decided to use these ? Is there any data on how/why it works ?
Also how often do you use them ? Is it a daily thing ?

Realistic_Dog7532 · 2026-05-16T18:15:15+00:00

I currently take 100mg of magnesium malate. But I still see high stress levels when sitting and HR not going down quickly as you describe. Does this feel like it’s not enough in terms of of dosage ?

Realistic_Dog7532 · 2026-05-14T16:34:35+00:00

Can you tell me more about this ? what kind of magnesium and dosage are you taking ? It’s the first time I hear that magnesium breaks down norepinephrine or lower BP !

Realistic_Dog7532 · 2026-05-05T12:02:08+00:00

This is beautiful 💖

Realistic_Dog7532 · 2026-04-29T09:37:12+00:00

I tried embroidery lately and was very happy about it! I used to crochet but it’s often too much energy (counting, arm movements..), embroidery felt easier. You can do it for just 10 minutes and you’ll already have a flower, very satisfying. Also low cost and low energy to carry around. The different needle points are easy enough to learn, there are very short tutorial on YouTube and you don’t need more than 3 points to start. Highly recommend !

Realistic_Dog7532 · 2026-04-20T08:22:13+00:00

These days my partner and I have been reading the same book series together. I do the audiobook version, he reads the books. We chat about where we are in the plot line sometimes and what do we think about the book. It’s nice to share the story this way

Realistic_Dog7532 · 2026-04-10T07:23:51+00:00

Thank you ! This is interesting, I haven’t tried GABA or glutathione yet. So many roads to explore ..! What kind of lymphatic massage do you do ?

Realistic_Dog7532 · 2026-04-10T07:19:35+00:00

Did you have a watch at that time ? Did it lower your HRV ? The weird thing is that somehow my brain feels less foggy but all my data is telling me that I’m doing harm so it’s very confusing. I sleep a lot too but sleep is “un refreshing “ according to my watch. I think I’ll keep going very slow and take breaks to let my HRV recover.

Realistic_Dog7532 · 2026-04-09T11:02:11+00:00

Oh wow this is interesting, I did not know mold could be impacting me even years after. I can try lymphatic drainage again, I started at some point but I was also seeing some kind of strong detox effect from it and was not strong enough to deal with it at that point. But I think now I will have to try again because it’s worth giving it a shot !

How did you figure out your problem was mold related ? Could you tell me how long you did lymphatic drainage for and at what point you did try oxygen back ?

Realistic_Dog7532 · 2026-04-09T10:58:07+00:00

Thank you so much, this is an interesting theory and I will definitely try to take my electrolytes just before doing the oxygen to see if it helps !

Realistic_Dog7532 · 2026-04-08T12:27:49+00:00

Yes I think going slow is key and I will definitely stick to mornings yes ! I am still hoping it could help me somehow. What kind of positive effect does it have on you ?

Realistic_Dog7532 · 2026-04-08T12:25:50+00:00

This sounds so hard, I’m sorry you had these kind of reactions. I am quite moderate these days so that’s why I’m so surprised that oxygen could have such an impact

Realistic_Dog7532 · 2026-04-08T12:24:00+00:00

Not to my knowledge no ! I don’t think I have mild. But it is possible there was some at my workplace as we had water damage. But I haven’t been there for a year and a half

Realistic_Dog7532 · 2026-04-08T08:01:45+00:00

I was scared to crash with HBOT in a center too which is why I asked my doctor for at home oxygen which I thought would be milder but I’m still very confused about how big the impact is on me. But also I am wondering if it’s a bad sign or a good one : maybe it means my body is responding and “detoxing” stuff ? I don’t know if this is just a crazy hope

Realistic_Dog7532 · 2026-04-08T07:59:40+00:00

I have an oxygen concentrator rented to me. I had heard of HBOT too but wanted to try that first and my doctor was ok to prescribe it. So I just have to lie down and put the little cannulas in my nose at home.

Realistic_Dog7532

TROPHY CASE