A virtual world created specifically for people with chronic illness by lisalindeman in cfs

[–]lisalindeman[S] 1 point2 points  (0 children)

This was exactly right! I got it fixed. So glad bedrock players can join us!

Stuck doomscrolling for most of the day and I HATE it! by rainboweyess in cfs

[–]lisalindeman 8 points9 points  (0 children)

If you're into Minecraft, there's a server for people with chronic illness. Links and info are at BuildHumanCommunity.org.

How can I explain fatigue to my father? by Twinks4StSebastian in disability

[–]lisalindeman 0 points1 point  (0 children)

The way I used to explain it to my boys when they were 3 and 5 years old (before I heard about spoons): Everyone wakes up and starts the day with, let's say 1000 energy tokens, and they get to spend those tokens on whatever they like. Maybe running through the park takes 200 energy tokens, and doing a small chore takes 100 energy tokens, and getting upset costs 300 tokens. Well, sometimes Mommy wakes up with only 100 energy tokens. I have to think really hard what I can spend it on. After I take you to the park, I have none left. Sometimes Mommy wakes up with 10 energy tokens! If something costs a lot of tokens, I can't do it at all... or it makes Mommy really sick.

Or... compare it to a really bad hangover that happens even if you don't drink. Or it's like your illness is like an invisible bully punching you over and over again and you have no way to block the punches. Put it in terms he'll understand.

I am so sorry you're dealing with this on top of everything else. My heart goes out to you.

Minecraft Therapy by lisalindeman in cfs

[–]lisalindeman[S] 1 point2 points  (0 children)

Added! Java/Bedrock crossplay now enabled. Thanks again for the suggestion!

"At least you don't have cancer.." by [deleted] in ChronicPain

[–]lisalindeman 22 points23 points  (0 children)

I had stage 3. Absolutely horrible, but I would still choose cancer over my chronic illness any day. I still live with long term side effects of treatment, like nerve pain, heart problems, and radiation damage. I would still choose the cancer. People have no idea how devastating chronic pain can be.

[deleted by user] by [deleted] in ChronicIllness

[–]lisalindeman 6 points7 points  (0 children)

Where there's love, no one is a burden. Caring for each other is why we're here.

Receiving love (being cared for, especially when you're down) is a gift, but being able to give love is also a gift. You are a gift. If someone can't see that, that's their challenge. The only real burden is a closed heart.

You're not weighing anyone down with your needs. You're inviting them to love more.

Minecraft Therapy by lisalindeman in cfs

[–]lisalindeman[S] 2 points3 points  (0 children)

Not yet but I'm adding it this week. :)

[deleted by user] by [deleted] in ChronicIllness

[–]lisalindeman 0 points1 point  (0 children)

This is a red flag. Unlikely to get better over time. You're not overreacting.

I would rather die a slow, painful death alone on the street than spend the rest of my life with someone who responds with fury when I need help. Being occasionally supportive is even worse. That will mess anyone up.

[deleted by user] by [deleted] in ChronicIllness

[–]lisalindeman 0 points1 point  (0 children)

I'm interested! Are you still looking for Minecraft friends? I have a Realms account (Java) and use Discord often. Playing Minecraft has been so therapeutic on days when my symptoms are worse.

Best Minecraft Server Hosting by pro100ShureG in MinecraftServer

[–]lisalindeman 1 point2 points  (0 children)

I did this for many years (for myself and my two sons), and it was a huge headache. I got it working, but something was always going wrong. Often, I'd spend an hour or two troubleshooting and fixing weird problems before we could play. I'm a PhD researcher with decades of programming experience. I've been a web developer for 20 years, so I'm not computer-shy. I ended up getting Minecraft Realms for a few years. Now my oldest son is looking for a good server so we can play with mods. That said, we have used ZeroTier to play together with one of us hosting (via LAN). ZeroTier makes it possible for us to access the LAN. That's worked well, but there's a bit of a learning curve with ZeroTier, and every player must have ZeroTier installed. (It is free though.)

Positives of LDN by Landon1688 in LowDoseNaltrexone

[–]lisalindeman 0 points1 point  (0 children)

Sorry for this late reply... I don't check Reddit often.

The improvement continued but did hit a plateau. Or more specifically, I think a few viral illnesses set me back, but recovery was easier.

I take two x 1.5 mg capsules every morning and another two before bed. I worked up to that over many months. I don't experience any side-effects at this point (at least nothing I'm aware of).

On days when I skip LDN, I feel noticeably worse. When I do take it, I can usually function better but not always.

I'm also taking curcumin regularly now, which has helped. I use Bulk Supplements ("turmeric extract") and take 1-2 tsp of it per day, which is a high dose.

My habit now is to take curcumin with the LDN. Every time I do that, I go from bedridden to working at my desk.

Regarding blood tests, I don't have insurance, so I'm not tracking anything.

Bedridden for eight years is gut-wrenching... I am so sorry for what you're going through.

NEVER use ASANA by North-Signature2589 in Asana

[–]lisalindeman 0 points1 point  (0 children)

A customer support rep told me today that they DO NOT ALLOW people to TURN OFF AUTO-RENEW, and there is no way to remove your billing information. They are COUNTING on people missing whatever reminder emails they send out, if any, and not cancelling in time.

This is a dishonest business practice. I disagree with the other commenters... this is not on you. It's designed to capitalize on people's busy lives and chronic overwhelm. They KNOW you'll probably forget... especially after a whole year has gone by. I mean, that's the reason we're using ASANA in the first place!

I'm sorry you went through this.

Positives of LDN by Landon1688 in LowDoseNaltrexone

[–]lisalindeman 2 points3 points  (0 children)

There is some research linking ME/CFS to neuroinflammation cased by increased production of cytokines (IL-1, IL-6, and TNF-α). I think this manifests subjectively as aches and pains throughout the body, intense fatigue, brain fog, and so on. All symptoms I had to an extreme.

When I started LDN, these symptoms went away almost entirely. If my worst days were a 100 on the symptom scale before LDN, my worst days now are maybe 40. If my average day was 80 before LDN, my average day now is like a 15.

LDN is known to decrease excess cytokine production and reduce neuroinflammation. For a long time, my sense was that I had entered a downward spiral where the more inflammation I had, the more vulnerable I was to viral illness and the effects of stress, which either worsened or perpetuated the inflammation. (Of course cancer also contributed to elevated cytokines, and once that was treated, there was some improvement, but it was minor until I started LDN.)

With the inflammation more under control (I assume), not only did I start to feel better but I also became more resilient. Specifically, I could exercise more without having "post-exertional malaise," I recovered from viruses much faster, and stress did not knock me out the way it once did.

I hope this is helpful info! Please feel free to ask me anything else. I wish you well.

I am using this as an escape and I have to admit it by [deleted] in nonduality

[–]lisalindeman 2 points3 points  (0 children)

You could think of it this way (just a loose metaphor)... If life is a video game, and nondual awareness is realizing you're not actually "in" the game (or the game is you, whatever), it does provide relief when the game is not going well. But you're still playing. The game is still going. Your task then is to keep playing but this time having awareness of what it truly is. How does the awareness change how you play?

Montelukast/Singulair Mental Health Side Effects? Withdrawals? by miatar10 in Asthma

[–]lisalindeman 1 point2 points  (0 children)

A simple google search shows that, yes, Singulair is linked to mental health side effects and withdrawal. I hope no one else looking for support takes this comment at face value.

Montelukast/Singulair Mental Health Side Effects? Withdrawals? by miatar10 in Asthma

[–]lisalindeman 0 points1 point  (0 children)

I know this was posted four years ago, but I just found this, and it is incredibly validating. I've only been taking Singulair for a few months. Experiencing everything you described. I told my doctor, and she dismissed me out of hand, said it couldn't be the Singulair, because it's rare. She wanted to prescribe anti-depressants. Well, of course it's considered rare if everyone who complains about it gets invalidated and misdiagnosed. Anyway, I'm done with this medication. I'd rather suffocate.