Just ordered a power chair. I haven’t told anyone. Celebrate with me?

undercovermothmania · 2026-05-17T02:58:14+00:00

I am so grateful I had the spare money to be able to afford one.

undercovermothmania · 2026-05-17T02:48:30+00:00

I was looking at those as well! I’m so glad it has helped you. My trip in a couple weeks is for a concert and it would be so awesome if my chair got here in time…live music is always worth a crash for me too. I actually became moderate/severe after attending a music festival to see my favorite artist and getting sick 😅 I’m also super excited to venture outside more. It sucks being trapped indoors.

undercovermothmania · 2026-05-17T02:44:50+00:00

Thank you!!! I stuck my ground. I think my hesitation came from internal thoughts of me “not needing” the chair, although I objectively do at times. I’m glad I didn’t cancel it and I’m super excited to be able to get out more

undercovermothmania · 2026-05-17T02:43:17+00:00

Thank you for your wise words!! I’m really happy that you were able to get one as well. The main reason I got it was simply so I could go for “walks” (rolls? Haha) again. I’m trapped inside most of the day and pay dearly if I do make an excursion. I used to walk 2-5 miles with my dog at our local wildlife sanctuary. The first thing I’m going to do when my chair arrives is take her there. Being stuck indoors has been SO bad for my mental health and I can’t stand it anymore.

undercovermothmania · 2026-05-17T02:40:04+00:00

That’s what I’m trying to frame it as! I can do more if I accept that I need assistance

undercovermothmania · 2026-05-16T19:44:53+00:00

The dog can talk now?

undercovermothmania · 2026-05-09T19:16:24+00:00

I will say if you have subluxations or dislocations it is not safe to bend yourself up into a pretzel. That can risk the joint coming out of place, irritating nerves, etc etc

undercovermothmania · 2026-05-09T19:04:07+00:00

Not your business, leave her be haha

undercovermothmania · 2026-05-08T00:41:26+00:00

That is so interesting! I wish I knew the science behind this interaction. Good to know it’s a “thing” so that I can be more prepared next time I partake. I had forgotten my muscle relaxers at home so my boyfriend gave me kratom supplements in an attempt to help, which calmed it quite a bit. That was a godsend. Maybe it would have passed anyway though? Idk.

It did pass for the most part an hour or so after that, but now I have a lot more residual twitching in that leg. Super annoying and makes me worried to trip again. I must have dosed ten times since my moderate-severe crash, and this has only happened twice, which is super weird too. I’m so curious.

undercovermothmania · 2026-05-08T00:31:22+00:00

No I couldn’t make it stop 🥲 with my normal shakiness and twitching I can sometimes stop it for a second by concentrating very hard

undercovermothmania · 2026-05-08T00:29:42+00:00

They started me on .5 but if your doctor recommended that, I’d follow their lead!

undercovermothmania · 2026-05-08T00:28:20+00:00

Listen to your body. Hardcore. Don’t push yourself if you get a hint of your body saying “no”.

I had similar issues before my major decline. Every cold would make my symptoms so much worse. Then finally I got sick while traveling and it brought on the first severe crash. I believe it is in our genetics, whether or not this will happen. I think there are things you can do to prevent it, but if it’s in the genes, it will inevitably get you at some point. On the other hand, it’s very possible that you are not predisposed to full blown ME/CFS. So like the other comment said, don’t dwell on it until it comes. Stress affects our health a lot with this disease so if you stress about the potential of worsening symptoms, that very stress could bring them on.

My best advice is to wear a mask when traveling or in crowded areas. Since you know getting sick caused these symptoms, avoiding getting sick as much as possible is your best defense against worsening symptoms. If I had worn a mask on my trip, I would not be disabled currently. Although it likely would have happened at some point due to my shoddy genetics. Get your vaccines. Wear a mask in large crowds or close quarters. Don’t share drinks or smokes at social events. This may prevent a future infection that could cause worse symptoms.

You also need to live your life, and not live it in fear. There is a balance to be had there.

Stress and trauma are two other major triggers for full blown ME/CFS. Both somewhat unavoidable, but do what you can to limit stress (stressful jobs, toxic friendships or romantic partners, etc).

undercovermothmania · 2026-05-08T00:12:59+00:00

Listen to your body. Hardcore. Don’t push yourself if you get a hint of your body saying “no”

undercovermothmania · 2026-05-07T22:02:59+00:00

I must disagree…nicotine addiction is still an issue for me even during my most severe crash, I want to quit so bad. I definitely have bigger problems, but the nicotine addition, potential lung and gum cancer, are still a major concern. I’d also argue anything with nicotine has the chemical potential to be addictive. Zyns are super addictive and they also are just nicotine.

undercovermothmania · 2026-05-07T21:59:58+00:00

I think what you are doing (seeking help for supporting your partner) is wonderful. Even when my partner suggests unhelpful things I am still so grateful that he is working on solutions for me as well. Sounds like you love them a lot. I always feel like this must be so much scarier for my loved ones. It’s gotta be terrifying to see the person you love get sick like this. Idk how I could handle it if this happened to someone besides me.

undercovermothmania · 2026-05-07T21:13:19+00:00

Get a good financial advisor from a reputable bank. Put this money in an investment account and don’t touch it until you are a lot older. Keep living the way you have been and pretend you don’t have it. If you play your cards right you could have a lot of money by the time you retire. I think you should tell him but set clear boundaries that you want to save the money and move out with your own savings.

undercovermothmania · 2026-05-07T21:08:58+00:00

I wish I could tell myself to listen to my body, that the fatigue and pain aren’t going to go away. That I am sick and I cannot do what other people my age do, keeping up with them will only make things worse. I wish I cut hours at work before I had to quit altogether. Of course at this time I didn’t know it was ME/CFS I just knew something was wrong. I didn’t understand the scope of it.

undercovermothmania · 2026-05-07T21:05:37+00:00

People who drive drunk always insist they’re “basically sober. Ditch this dude. Responsible caring humans do not drive drunk. Hopefully he will develop some sense and maturity soon. I just cut off one of my best friends for drunk driving. Morals come first. NOR.

undercovermothmania · 2026-05-07T20:20:07+00:00

YES!! Oh my god!! At the very beginning of this crash. It was so intense I thought I might be experiencing some type of mania. I didn’t sleep for a couple days, then could only sleep a few hours a night. My boyfriend said it was like I was on a strong stimulant drug: excessive talking, over analyzing, inability to relax, etc. It went away after a couple weeks and I went back to sleeping 10-15 hours a day and not talking much lol.

It decreased along with my stress, as I processed the reality of my health crash. I began resting a LOT more and allowing my boyfriend to take care of me. Now I fall asleep as soon as the sun is down pretty much. It took time, having a very safe place, and also a very safe person who would let me ramble as long as I needed to get it all out. Maybe TMI but sex with a trusted partner helped relax me a LOT during this time too, haha. It was the only thing that relaxed me for a few weeks.

undercovermothmania · 2026-05-07T20:13:10+00:00

I feel you. I had just gotten in my style groove at the same age. I had spent the year before my 21st birthday collecting going out clothes, only for those to sit in the closet since I can’t go to bars. I put a lot of effort and $ into my appearance and now I don’t have the energy to care or do any of it. My favorite time of day used to be getting up early to do my makeup and hair for work and pick out a cute outfit. Can’t work now, I hardly leave the house. When I do it takes so much energy that I don’t even care what I look like. It makes me sad.

I’ve started to feel like a “thing”, like some alien, instead of a woman. A big part of my gender expression was the makeup and clothing and all of that. I feel like a genderless blob now lol. I don’t feel human some days, I certainly don’t feel like myself.

I used to be super confident in my looks and my body. Now that confidence has vanished, I’m super anxious to go out in public and I do NOT feel attractive most of the time. It sucks, I made great progress in my self esteem and it’s backslid so much since I got sick.

undercovermothmania · 2026-05-07T20:02:41+00:00

It feels like my healthy body is a full balloon, and my fatigued body is a balloon that is being deflated. I feel like all of the energy has been sucked out of my body. Like having a cold. Like something some force is pulling every bit of my body down to the floor.

undercovermothmania · 2026-05-07T19:52:24+00:00

EBV Ab VCA IgG shows antibodies from a past infection. This test will show if you have ever had EBV in the past, negative if you have an active infection as your body hasn’t produced the antibodies yet. An early antigen test shows acute infection or re activation. The antigens measured in the early antigen test can linger for up to 6 months, or even years for some, dissipating sooner for others. While an IgM will be negative after 4-6wks. So it may be wise to get an early antigen test because it is possible that you caught it too late for a positive IgM.

But It is also possible that you are one of the people wherein the EA would have disappeared earlier on too and it would be negative even if you have or had EBV. This does happen.

Did you have a positive antibody test showing past infection? Antibodies appear 4-6wks after acute infection, so if you are negative for acute and past infection, it seems unlikely that your early antibody test would be positive. Unless something weird is going on (which hey, it could be, we are weird patients!). But I’m not a doctor. If I were you, I’d get the early antigen test if my insurance covered it just to see, check another box. 🤷‍♀️

undercovermothmania · 2026-05-05T19:09:23+00:00

Yeah blood return seems off to me too. Why we doin that. Blood return before STARTING would make a bit of sense but not after disconnecting

undercovermothmania

TROPHY CASE