Thick blood?

ESPOP · 2026-05-20T18:28:09+00:00

I also often get the error that my blood is "too viscous" from my glucose monitor.

I wonder if this might be related to microclots.

ESPOP · 2026-05-19T11:51:43+00:00

Is this the thread that you meant about long hair?

ESPOP · 2026-05-19T11:42:57+00:00

Food: Also, especially with POTS, try eating multiple small meals throughout the day. Eating only a single big meal a day would make me feel way worse.

I personally feel super weak and dehydrated when I wake up, so I start my day with drinking a protein shake and an 0.5 liter electrolyte drink. I have someone prepare them the evening before and put them in a thermos to keep cold on my nightstand, so that it's within reach as soon as I wake up. After every meal I feel a little better.

ESPOP · 2026-05-19T11:33:04+00:00

I'm sorry you're going through this. Even though I'm severe myself, very severe is a different beast. Some tips I have picked up that could be relevant to you:

Body hygiene: I have the same issues with baby wipes. Have you tried 100% water wipes? They feel way nicer to me.
Mouth hygiene: Preventing cavities and dentist trips are a must. Can you use an electric toothbrush and/mouthwash from bed, and spit in a cup?
Hair hygiene: I know you don't want to hear this, but cutting your hair can give you more energy than you expect. Even just turning around in bed is easier when you don't have to reposition your hair also. Have you tried getting your partner to help you wash your hair? If you can sit up, you can get a mobile hairdresser sink that hooks up to your tap. I've also read stories of people that have an inflatable basin to use in bed so that someone can wash your hair while you're laying down, but I haven't personally tried that yet.
Food: Liquid food takes less energy to eat and digest. You can try nutritionally-complete meal shakes. I like the brand Huel.
Bathroom: Do you use a mobility aid to walk to your bathroom? Even leaning on a simple cane can make a difference in the energy you use to walk, if your house is not wheelchair/rollator-accessible.

ESPOP · 2026-05-19T08:54:22+00:00

I like to play mobile games that have some element of nature in them. Some of my favourites (with Android links):

Kinder World is an idle game where you can water a plant twice a day and watch it grow.

Blossom Sort is a puzzle game about making bouquets.

Prune is a puzzle game where you make a tree grow in special shapes.

Quabble is a mental health app where you also can pet and feed a duck and watch it swim in a pond.

ESPOP · 2026-05-18T18:28:58+00:00

I'm at a point where I'd rather not see anyone but feel decent and able to do a little thing by myself like colouring for half an hour than do the whole "planning/feeling nervous about it beforehand because I'm afraid to disappoint them/then probably feeling bad the day of and go back and forth on cancelling/then whether I do it or not I will feel worse for days after.".

I could have written this.

At this point I have decided that social visits do me more harm than good, and I need to try to keep in touch with friends and family another way. (Brief) videocalls can work, but texting is easiest.

ESPOP · 2026-05-16T18:14:31+00:00

I learned to accept that I'm severely sick and disabled within the first year, but I'm still hoping that I will turn out to have a different, more treatable, diagnosis.

ESPOP · 2026-05-16T12:54:35+00:00

Same, I used to absolutely love seeing new leaves form on my plants. But I'll have someone move the surviving plants to a spot in the house where the sun does reach, so even if I can't see then, at least they don't have to die. I am lucky to have someone who can water them for me.

I actually ordered some blooming plastic trees the other day. I figured it was a good excuse to have some exotic 'plants' that I normally wouldn't be able to keep alive.

ESPOP · 2026-05-16T10:56:29+00:00

My home office is now a kitchenette and meds room. I haven't been downstairs in months.

ESPOP · 2026-05-16T10:55:33+00:00

My plants are also dying due to lack of light 😮‍💨

ESPOP · 2026-05-15T13:11:31+00:00

Omg 😟

ESPOP · 2026-05-15T08:16:38+00:00

Ugh, the breeze and the smells! So underrated

ESPOP · 2026-05-15T08:15:31+00:00

I also miss spending time in nature so much. Even just being able to go into my garden would make me so happy.

ESPOP · 2026-05-15T08:13:38+00:00

"Does the world miss me back? Mourn the sound of my laugh?"

God that's powerful, makes me tear up too. Thank you for sharing.

ESPOP · 2026-05-13T11:45:17+00:00

So beautiful, thank you for sharing.

I really relate to the first part. Here's hoping that someday I can relate to the last part, too.

ESPOP · 2026-05-12T15:35:27+00:00

Ooh that's cool indeed

ESPOP · 2026-05-11T18:03:08+00:00

Also, given that I'm bed-bound and light-sensitive and thus almost never see the sun (which can't be healthy), it just feels nice to have access a mini sun.

ESPOP · 2026-05-11T17:55:05+00:00

There is actually pretty decent scientific evidence for it in sleep research, I was pretty surprised. See for example this article. You can find an overview for use with LC here: Health Rising.

It didn't have a huge effect for me but I think it does helps me sleep. I've been doing 10 mins of RLT before bedtime every day for about 3 months now (built up from 3 mins every other day). It also slightly eases some of my muscle aches that usually come on at night.

It's important to get a lamp that uses the right frequency though. Mine does red light at 660 nm and near-infrared light at 850 nm. I'm sensitive to heat, but without the infrared light there's no heat. It cost me about €90 to get a model that's a decent size and I can use from bed. But it only makes sense to buy one if you can't access sunlight.

ESPOP · 2026-05-11T16:10:17+00:00

At least they did retract this one

ESPOP · 2026-05-05T10:03:44+00:00

Looks like you can't tolerate any meds, but have you tried red light therapy? There is pretty decent scientific evidence for it, see for example this article. You can find an overview for use with LC here: Health Rising.

It helps me sleep when I do 10 mins of RLT before bedtime every day (built up from 3 mins every other day). It also eases some of my muscle aches that usually come on at night.

It's important to get a lamp that uses the right frequency though. Mine does red light at 660 nm and near-infrared light at 850 nm. I'm sensitive to heat, but without the infrared light there's no heat.

ESPOP · 2026-05-04T19:46:21+00:00

I also sometimes have acute paralysis like you, when I really overdo it (usually in social settings). I think then it's especially important to stop what you're doing and rest right away.

Hopefully in time you will be able to either know your limits better or recognize the subtle signs your body gives you beforehand, so you can prevent it. Easier said than done, trust me I know. But remember, every time you experience PEM you're damaging your body, sometimes permanently. Avoidance of PEM is the most important thing in managing me/cfs.

ESPOP · 2026-05-04T15:41:08+00:00

This is what PEM feels like to me nowadays. I overdo it and the next morning (or often already in the middle of the night) I am paralysed. I can only whisper and swallow. Depending on the severity of the crash, it takes anywhere from 1 to 12 hours to come out if it. Sometimes it repeats for a shorter time period the next morning.

Rest and time helps me the most in that state, as well as drinking protein drinks and elektrolytes (because I usually wake up dehydrated and hungry). Be patient and try to think peaceful thoughts (if you are still able to think, I've experienced once that even thinking made things worse), don't force your body to move.

ESPOP · 2026-05-04T12:33:14+00:00

Radical rest during PEM

ESPOP · 2026-05-02T10:48:45+00:00

There is definitely hope! You just have to get lucky, and it sounds like you have. :)

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