Is anyone treating lyme etc while working a full-time job and having no support system?

well 1) i believe adequate treatment is a full time job and 2) we all self treat to some extent w/ or w/o llmds ; thats what makes this community resource so invaluable. wishing u a warm welcome . the disassociation from the human experience is built into these pathogens but it gets better online friends here and on lymenet really helped .

also fwiw there are a few decent protocols which lay a treatment path like jay davidson celcore or rawls has one , i used zhangs after reading his book . and the key to minimizing herxes is detox detox detox . keep us posted

I worked several jobs, (I had to be present), and I eventually was somewhat limited what I could do. So I changed jobs and took a pay cut (thats life).

Lyme groups/meetings (in person and Skype) serve as support for some people. Have any of those in your area?

Non-lymies can find it hard to understand. At least I got to borrow a more dependable vehicle for some longer winter drive LLMD visits. One sibling "got it" at least. (But, being a guy, were commonly "expected" to do whatever is needed no matter how ill we are.)

astroman, did you change jobs to something you could do from home that you didn't have to be present for?

I'm sorry if that's too personal. No need to share if you don't want to. I guess I'm just curious to people's stories. I don't have anyone to talk about this with. I've been scared to participate in illness support groups and forums before because some people's symptoms are so scary, I didn't want to scare myself into having them. I have had some symptoms caused just by stress that I realize weren't lyme at all, but they were very scary. I didn't want to get their symptoms in my head for my brain to copy. But I have been stressed lately by what I've been thinking is a herx, so...well, here I am.

Hi Girlie,

Thank you, but I'm really looking for the replies of people who don't have that kind of support.

Posts like yours kill me, because it reminds me that if I get to that point, I WILL die. It's just a reminder of what I don't have.

I'm glad you had that support, my I'm looking for hope from the people who have not and still somehow managed.

Hi again, star_parade:

Since I resigned my jobs, I didn't/don't get unemployment. I had two years of living expenses in my emergency savings that initially supported me. After exhausting those funds, I sold my washer, dryer, kitchen table and chairs, and my watch. Next, I began dipping into my small retirement account. Plus, there was the money I made in my last two temporary jobs. I recently had to start dipping into my retirement account once again.

I'll have to move out of this place in the next couple of months and I'm not sure where I'll go. Even if I had a job to show income, rents have gone up quite a bit and I'm also not sure how long I could hold another job. My last job was remote as was the one two jobs ago. There's no way I can go back into an office environment, due to light sensitivity (migraine trigger), sensory overload issues, multiple chemical sensitivity (migraine trigger), etc.

As for your last remarks in your message to me, I don't think you're weak. You're just not aware of how much you can endure. My hope is that you'll not have to find out how much you can tolerate, but humans are stronger and more resilient than we realize. Look at what Navy Seals can endure, mentally and physically. Think of children who are born into and live their lives in war zones. According to the International Labour Organization, there are approximately 50 million people worldwide who live in modern slavery. Human trafficking, victims of ongoing domestic violence, and other horrors I'll not list.

I don't mean for this to be depressing. Quite the contrary, because there are people in such situations who come the tragedies and trauma and keep living their lives. Consider Victor Frankl. There are many others.

When we're young, it's a blessing to not know what's coming in life. If we had a preview of what we'll have to suffer, it would be overwhelming. But, humans are adaptable, for better or worse. Life just layers stuff on top of stuff on top of stuff. Before you know it, people manage to get through things like high school, college, the military, starting a career, dating, getting married, having kids, buying a house, and on and on and on.

What I'm trying to be better about is not looking too far into the future. (And, staying out of the past.) For me, I do better when I focus on the next right thing I need to do. What will happen to me in a couple of months when I'll have to move is still important, but my mental and physical energy are so low that I need to conserve them for the present. This is still a challenge for me, but I know that splintering my attention across too many things just mentally and physically exhausts me even more. I tell my conscious mind not to worry because the subconscious mind is still on duty and worrying plenty enough in the background. Funny, sad, and true.

I'm sorry that I don't have more to offer. Feel free to keep the conversation going, whenever and wherever you feel the desire. Truly, I wish you good luck.

Take care,

Dude

I work a full-time job and do some work for my girlfriend's company also. I do have support, but we are both sick where I'm the “healthy” one and help her out.

I don’t have any health practitioner that helps me, but I learn from books and Huberman labs podcasts, where my focus is lifestyle treatments mostly.

I just want to thank everyone for their replies. You guys don't know me and yet you've been willing to share a bit about your stories, and it's given me some hope and some things to think about.

I really wish the forum had a way to tag people directly in replies, alas.

@astroman - thank you for your reply. I wish you the best and continued positive progress.

@The Dude - my heart goes out to you. again, no need to apologize for not "having more." I feel like a lot of people who deal with this kind of thing are just so privy to the somber reality of our situations, especially since we don't live in a society that supports health. I have been dealing with suicideation for awhile, after years of trauma and only recently finding a hint or two as to why I have been unwell for a decade. So my assumption is that if things get that level of worse, that probably will be my limit. In a lot of ways I already feel like I'm at my limit. I'm grateful I still feel well enough to work, though. I guess I just now realized how important it is for me to stay at least at that level.

Still, thank you for your comment. I hope you are able to find something that works for you, housing wise. I'm hoping to be well enough one day to buy a tiny house (certainly don't have the energy to build one) so that I don't have this concern, but that is a pipe dream right now. Speaking of which, I also struggle with being present and not 'in the future'--it's so hard when you are the only one able to take care of you at all.

@Garzie -- Thanks. I really relate to what you said about needing to change my life style and diet. I definitely need to figure something else out other than full-time work for an employer. Maybe I should ease back on the herbs and put my energy there... I have hated employer based work for so long. I'm sure it's harming me on a spiritual level. Self-treating IS a lot, and having the flexible time to do this, or nap, or just slow down would be so nice...Can I ask you how you have been able to survive without working for 8 years? You can of course feel free to ignore the question as well.

@Deep_sleep - thanks for sharing. Hoping for the best for you and your partner

@auzzie - ah, I just want to give you a hug! such a long journey. I'm glad you've been able to find some kind of peace in all of it. Thank you so much for sharing, and I hope you're able to find continued improvement somehow (definitely relate about not trusting doctors and them not being very helpful).

star_parade,

Because of what you wrote, I'd be remiss if I didn't mention the "988 Suicide and Crisis Lifeline." They're available via telephone and text by dialing 988 and via chat on their website https://988lifeline.org. I sincerely and respectfully request that you please give them a call. Everything is free and confidential.

If you wish to block your outbound Caller ID, add *67 before the number. This works for calling normal 10-digit numbers, so I assume it would work for this, too. So, you would dial *67988.

As you can see from the replies from everyone here, we do care about you. And, it's clear from your replies that you're full of kindness, empathy, and compassion. So, let's not ruin a good thing! : )

Though no one else can ever know how you feel or what you're going through, I sure do identify with your comment about being grateful for feeling well enough to work...but, also realizing the importance of staying at that level...as a minimum. Especially in my most recent job, I felt like I was running fast on a treadmill. That was daily life. And, if I made one misstep, slipped, or tripped...well, THIS would happen.

Coincidentally, I share your desire for a tiny home. Back in 2006, when I first heard about them, I wasn't nearly as interested as I am now. It was a novelty. The first home I saw was 96 sq. ft. It was built by Jay Shafer -- the founder of Tumbleweed Tiny House Company. I can't recall the exact price, but I think it was less than $20k in materials, but he built it himself. Like you, I wouldn't be able to do so. These days, I have no desire, anyway.

I just found a video from 13 years ago showing an 89 sq. ft. home that Jay lived in. In the video description, it states: "Ready made: $45,997, Build it yourself: $19,950." Again, that was as of November 2009. Currently, their website doesn't feature such size homes. I guess they were too tiny. Now, their cheapest home starts at $89,959. I've seen some priced around $125,000.

Then, of course, one needs land and services like electricity, water, sewer, trash/recycling, etc. I've seen tiny home lots that provide a pad to park a mobile tiny home and offer water, sewer, and trash/recycling for $600/month. So, with a not-so-tiny tiny home mortgage, lot rent, and utilities, that would probably be around the same price as paying the mortgage on a small, slab-built home.

One tiny home community lists amenities like a community pool, dog park, yoga, fitness center, community fire pit, and a clubhouse. No thanks. I'd rather have an acre in the woods as far away as I could get and still get utilities.

*sigh*

Money makes the world go around. That's one reason I'm at a standstill.

Anyway, regarding the folks at the 988 Lifeline, I hope you give them a ring. Your wellbeing is important.

First this post turned out being a little longer than what I wanted and I thought of deleting it all. Oh well.

....When you have that sense that your life may be near the end and you seem neutral on not even caring anymore ...... you need to remember what you were /are good at, past or present and what in life gives you joy.

We have to remember that we are individuals and not defined by societies expectations. Forget the timelines of what we’re supposed to have and do at certain times of your life, .....screw that.

I have worked for regional divisions of a couple of very big companies in the past, I must say it sucked. I was just a number. With managers and HR just spewing out repeated brainwashed verbiage of corporate garbage. There was a lot of corporate brainwashing in the company culture, which I find really weird. But I got a paycheck and healthcare which was the point. That’s said, I left two of those places, not just because of corporate toxicity but cause lyme made those jobs more and more difficult to do.

One thing living through lyme taught me is you have to be very creative. But It’s pretty hard to be creative when you’re all stressed out so I had to go to my happy place to do that, which is nature. Ironically the same place that made me ill. There was a time when that’s all I had left,.. life seemed quite pointless With all the endless pain, insomnia, etc.

Point is , whatever it is you really really like try to somehow engage in it even if you can only do a little of whatever it is.

I made it my goal to do more and more of my hobbies that I , at one time could not do at all. I have a lot of hobbies and I won’t get into them in this post. That was part of my healing ...having a purpose of possible goals that meant something to me.

———————-

Something I got to do this early evening that would’ve been very difficult 10 years ago:

I went down to the rocky tree-lined snowy creek in the local ravine to check on the new local resident beaver making home there. They are mostly nocturnal and I finally spotted him just before sunset ...he stared me down for about a minute. It was like a visual standoff, its possible he never seen a human being before that close. Then he went back under the ice.

But when I climbed out of the ravine into a little more sunset light where it opened up...I noticed some fresh huge paw tracks in the snow. Not dog tracks. Fresh Mountain lion/Cougar tracks, about 4 inches wide. There have been more spotting‘s in my area. I’m not worried it’ll come into my yard. The creek Irving is a more natural place for it , which Goes for miles. For me, this is a cool find.

My point of all this storytelling is to remember that life will be better and you’ll be able to do things that YOU once enjoyed again. And maybe there are some things that you can do now that you never took time to do before.

.

Post Edited (astroman) : 2/19/2023 7:51:24 AM (GMT-8)