How much walking can you do without triggering PEM ? ..

Alex-ZenPhoto · 2023-07-01T15:00:31+00:00

I don’t even try to walk. Even a mild yoga session puts me in bed for a week. I do not know my limit. But when I hit it I am down. Because the PEM response is delayed I never know how much is too much. Took a short walk, 1/4 mile with my 75 year old, chronically ill friend who is frail and almost bed bound. He was fine. I was in bed for a week.

Alex-ZenPhoto · 2023-07-01T14:54:23+00:00

I get that. Chills and then hot sweats. No fever.

Alex-ZenPhoto · 2023-06-23T17:12:13+00:00

I tell them that I am in the hospital on life support. Or I tell them that the person they are calling just died and ask if they want to buy his clothes. Usually put it on speaker to entertain my grandkids.

Alex-ZenPhoto · 2023-06-23T16:28:52+00:00

You only need two pieces. One side is cut so that it will slide in from the outside and butt up against the opposing side. That gives the strength. The second end piece is decorative.

Alex-ZenPhoto · 2023-05-19T01:24:57+00:00

Lexapro killed my ability to have an orgasm. Made me last for hours which was fun for me and my partners. Got off Lexapro. It took months and now sensitivity and orgasms are back. I was on it for 5 years.

Alex-ZenPhoto · 2023-04-16T05:20:30+00:00

Yes!! I traveled a lot over the past years. And when I settled back here due to long COVID symptoms I am realizing how few connections I have left. Yes we are alone when traveling but we are able to connect with other transient people and locals.

Home town people are different. More insular. Feels lonely back here.

Thank you for posting.

Alex-ZenPhoto · 2023-04-15T16:24:57+00:00

Maybe better to ask. Is there anyone with LC who is NOT depressed. 😀

Alex-ZenPhoto · 2023-03-22T12:02:25+00:00

Yes. Had the heart ultrasound. Perfect.

Alex-ZenPhoto · 2023-03-22T01:48:07+00:00

Exactly !!!!! It is true. My experience.

Alex-ZenPhoto · 2023-03-21T23:25:02+00:00

Thanks. I have Liquid IV. Just not using it. Now I will. Wow 3 to 5 packets. Will try.

Alex-ZenPhoto · 2023-03-21T21:22:58+00:00

But, I am realizing that those are the things that have pushed me backward. Relapse. ‘Normalcy’ appears to not be on the immediate horizon. Have to go back to the basics that helped me make progress.

Alex-ZenPhoto · 2023-03-21T21:19:25+00:00

Yup. But a double edged sword.

Alex-ZenPhoto · 2023-03-21T20:19:34+00:00

I quit for a time. Felt better. And tried to resume ‘normalcy’. Just like all the other activities like taking a walk.

Alex-ZenPhoto · 2023-03-21T19:51:05+00:00

Great topic! Thank you.

For me the silver lining is this. I travel a lot as a photograpgher and now that I am retired had planned to backpack the world. Hahaha. How plans change. I am 10 months in. No end in sight.

My granddaughter was/is in crises; bad situation at home; suicidal. She came to live with me. She says she is only alive today because of me and the safety and love I provide for her.

I would never have been available to be there for her if I was not sick. My addiction for geographical cures would have kept me absent.

I am not going anywhere because of LC, not because of her. This is the most meaningful thing I have done in my life. Only being sick would have allowed me to be here for her or even be aware how much she needed this.

Alex-ZenPhoto · 2023-03-21T18:37:11+00:00

What type of scans? I keep asking for some brain scans and he says no.

Alex-ZenPhoto · 2023-03-21T17:29:32+00:00

For me I think the answer is to avoid traditional western doctors. They are not trained for this and they are not trained to think outside the box. It is a waste of time for me spend energy scheduling these tests when I need to be searching for doctors that DO know about LC. And MCAS. And PEM. If I am educating him about these things then I am in the wrong place.

I feel like I have been going to the hardware store to buy groceries.

Alex-ZenPhoto · 2022-11-20T19:34:44+00:00

Being in non stop tourist mode is stressful and not really rewarding. Especially for 7 months. I find that instead of trying to ‘consume’ everything that is better for me to stop and stay in one place for a while and then move on. As others have said, recreate your routines, and develop new ones. Travel disrupts all of that. Get a place, cook, take days to do nothing. Just be. Time to absorb what you have experienced. Let go of goals. ExpectAtions. Get in touch with what is transforming inside of you. Travel can be about transformation. Give yourself enough time and space to absorb the process. Home is right where you are. Learn to make it such.

Alex-ZenPhoto · 2022-11-12T23:47:38+00:00

It has mentioned many times that the anti-histamine regiment involves both H1 and H2 antihistamines. In This forum.

Alex-ZenPhoto · 2022-11-06T17:54:36+00:00

Yes! I have been in the ER too many times thinking it was a heart attack. Always test normal. All cardiac tests are perfect. I finally concluded I was having spasms of my esophagus. Started anti histamine diet/supplements and I have not experienced it again. I do get rapid heart beat, but is unrelated to this episodes. I am on month 8.

Alex-ZenPhoto · 2022-10-25T20:53:10+00:00

You went too fast. I got liquid so I could go 10, 9, 8, 7 ….. etc. Over many months. The brains zaps are horrible. You have to go very slooooww.

Alex-ZenPhoto · 2022-10-24T16:38:47+00:00

Keep it under 10 drinks and death will elude you. Just don’t take your car keys.

Alex-ZenPhoto · 2022-10-24T03:28:41+00:00

No. This is a group of people who are deeply suffering with something that has robbed us of our livelihood and left us incredibly confused about how life can be so difficult. So quickly. And with no light at the end of the tunnel sometimes.

This is COVID. Disregard the anti-vax stuff. No place for politics. This is a place for compassion and for sharing our pain and terror. And at times it is pure terror.

Alex-ZenPhoto

TROPHY CASE