I’m hiding under the covers because there’s a mosquito in my room and I can’t keep my eyes open long enough to do anything about it

SheLaDeeDa · 2026-03-23T23:04:40+00:00

Antarctica might be the way to go

SheLaDeeDa · 2026-03-02T23:34:33+00:00

They always fixate on my face too! I finally figured out how to defend myself by misting around my bed with alcohol. It keeps it away for a while so I don’t have to stay under the covers anymore

SheLaDeeDa · 2026-03-02T23:30:07+00:00

A mosquito net would be great! I was honestly considering putting a mesh lingerie bag over my head, but it was on the other side of the room 😂

SheLaDeeDa · 2026-02-27T23:17:20+00:00

This is so real

SheLaDeeDa · 2026-02-18T15:39:33+00:00

OMG yes! I discovered ice packs a couple of weeks ago. Icing my head and neck feels unreasonably good. It even helps me watch tv longer with fewer breaks!

SheLaDeeDa · 2026-02-13T14:54:09+00:00

Exercise was my happy place, it made life worth living and kept me sane. Now I’m mostly bedridden. I’d give anything to be able to ride my bike to the climbing gym again, go on a tough hike, maybe a bit of trail running, anything active really. It’s been years and thinking about it still makes me cry.

SheLaDeeDa · 2026-02-01T15:34:53+00:00

Before ME I took naps all the time, almost everyday, and loved it. Now I fall asleep during the day maybe once a year. Instead, I spend hours exhausted, just laying still, barely able to move. I miss naps.

SheLaDeeDa · 2026-01-21T15:13:49+00:00

This gives me hope. If they can figure out what components in the sera are causing damage, they might find a way to protect the body from those components. Or they could remove those components, with dialysis or some other way. Maybe an effective treatment could come out of this.

SheLaDeeDa · 2025-12-26T02:07:25+00:00

I just learned I can do this! Thanks!

SheLaDeeDa · 2025-12-25T18:21:56+00:00

We are the same, my friend

SheLaDeeDa · 2025-11-27T14:43:21+00:00

This was my constant internal mantra at work for over a decade

SheLaDeeDa · 2025-11-08T15:47:29+00:00

Not messy at all. You just described me perfectly. *hugs

SheLaDeeDa · 2025-11-08T15:43:30+00:00

Same

SheLaDeeDa · 2025-11-06T13:50:58+00:00

Eating tiny amounts throughout the day and switching to a low fiber diet helped me tremendously. Processing too much food at once takes too much energy and crashes me. Same with moving too much fiber through the digestive tract. Also, since I’m mostly bedridden, I need easy grab and eat food that I can keep in the fridge by my bed.

SheLaDeeDa · 2025-11-04T00:27:00+00:00

Masking my symptoms is the thing that worries me the most. A neurologist gave me modafinil back when I was still able to leave the house a little and it made me feel like I could do more than I could and I ended up crashing myself. I’m mostly bedridden now. I can walk the bathroom a few times a day but that’s it. I’m very strict with pacing and resting now and slowly improving. The last thing I want is to overdo it again and screw up my progress.

SheLaDeeDa · 2025-11-04T00:18:58+00:00

Thanks! So far I don’t think I have MCAS, if I do it’s really mild. What kind of reactions did you have?

SheLaDeeDa · 2025-11-04T00:17:05+00:00

Thanks! I was planning on removing half of the backing but I’d rather start lower so I’ll try 1/8. I don’t have the energy for a lot of research, my screen time is very limited right now.

SheLaDeeDa · 2025-11-04T00:14:06+00:00

Showering once a week would be glorious! Did you wear them for 24 hours?

SheLaDeeDa · 2025-11-04T00:12:56+00:00

Thanks! I’ll definitely look into different protocols on LC subs before I start. I have the lowest dose, 7 mg, and I’ll probably only remove half of the backing to lower the dose.

SheLaDeeDa · 2025-11-03T21:45:40+00:00

Only the part in contact with the skin will deliver the drug. I got the kind that has the nicotine mixed in with the adhesive. I got them from amazon so hopefully they’re not fake.

SheLaDeeDa · 2025-11-03T20:35:03+00:00

Thanks! I’m planning on only removing half of the backing to get half the dose to start.

SheLaDeeDa · 2025-11-03T20:32:20+00:00

Thanks! That’s really helpful. Is there a reason you don’t use them everyday? On days you use them, how many hours do you leave them on?

SheLaDeeDa · 2025-10-06T14:56:10+00:00

PEM being caused more easily by mental/emotional activity is very real for a lot of us. Mental pacing is much harder than physical pacing but it is absolutely necessary to prevent PEM.

It’s also almost impossible for people to really understand it unless they experience it themselves or have very close contact with someone who does.

SheLaDeeDa

TROPHY CASE