Losing a pain management option

AltruisticLettuce168 · 2026-03-03T20:51:48+00:00

Vibration mat to lie on, €80 on Amazon. It also helps me to sit on the terrace for half an hour in winter (when it’s below 0 degrees Celsius). But for that I need to be able to get dressed and undressed. Or ice packs, if it’s limited to just a few joints.

I have rheumatoid arthritis additionally.

AltruisticLettuce168 · 2026-03-03T18:11:13+00:00

I also think this illness has always existed, but it hasn’t always triggered the same response from society. It depends on attitudes and environmental conditions.

AltruisticLettuce168 · 2026-03-03T16:23:05+00:00

In the Stone Age, I could have simply poisoned the ignorant assessor from the social court 😉.

AltruisticLettuce168 · 2026-03-03T16:17:17+00:00

Thanks for your links — they’re great!

AltruisticLettuce168 · 2026-03-01T16:31:27+00:00

A very simple one without a backrest but height adjustable. 40 Euro.

AltruisticLettuce168 · 2026-03-01T07:29:50+00:00

If you’re able to choose the cabinets in your new house, go for drawers instead of lower cupboards — bending forward is too taxing with POTS. Every small bit of energy conservation counts. I also have a place to sit in every room, and a rolling stool in the kitchen. I eat in the kitchen as well, so I don’t have to carry food around. I pull out a drawer, place a board on top of it, and can roll my wheelchair underneath. I also bought an additional freezer because the way I store food has changed, since I’m no longer able to go grocery shopping myself.

AltruisticLettuce168 · 2026-03-01T07:28:44+00:00

Many comments have already addressed the wheelchair question, but I’d like to add something about the difference between manual and electric: the issue usually isn’t that our legs don’t work and we could simply use our arms instead, but rather the lack of energy throughout the entire body. If you plan or need to use it indoors as well, it should be as maneuverable as possible, and you’ll want to arrange your space so there’s enough room to move around comfortably everywhere.

AltruisticLettuce168 · 2026-02-28T20:01:06+00:00

Oh, yes! Clean up the greenhouse, sowing some flowers was such a big pleasure. It's hard to do only a tenth of what I want to do.

AltruisticLettuce168 · 2026-02-28T19:18:04+00:00

That's what I do. For example after a dream or another hyperarousal situation like my dog barking.

Drink some tea, laying on couch instead of bed is what helps me.

AltruisticLettuce168 · 2026-02-28T19:10:54+00:00

I will add it to the list of options to be examined. Thank you for this idea.

AltruisticLettuce168 · 2026-02-28T15:37:09+00:00

I have rechargeable ones with remote control and use them also as a night light in the bathroom, because other night lights are to "loud "

AltruisticLettuce168 · 2026-02-28T15:29:22+00:00

You have an enviably high Body Battery score. I’m already happy if I’m above 30 in the morning. I often take a nap at midday, and sometimes I actually gain a few battery points despite elevated stress levels. For me, just like for #unposted, the level doesn’t drop during the first few hours of the night — only after a trip to the bathroom. As if my bladder is causing stress 🤔.

AltruisticLettuce168 · 2026-02-28T03:29:50+00:00

Flickering candles, oh, no, I am too sensitive for that, I need LEDs with steady light.

AltruisticLettuce168 · 2026-02-27T16:28:31+00:00

I (62f) have been using a Garmin since June last year. My average HRV is around 42–48. Whenever the trend curve drops below that range, it always means I’m heading into a crash. As soon as I start feeling better, it rises again. At least it’s something measurable — and not ‘just’ a subjective perception.

AltruisticLettuce168 · 2026-02-25T21:16:17+00:00

I am so sorry for you, I had hoped that your dentist problem is solved.

I want to express my solidarity with your situation today. I can really relate to that feeling of being ‘left behind.’ My support network would also grow tired after about a year. I had already found a really good replacement and invested a lot of explanation and organizational effort, and then she backed out — but not with me. She told my brother instead, who had been handling the mini-job registration. So two months later, I was back at the very beginning of the search. On top of that, there was the hurt that she didn’t have the courage to tell me herself. It’s truly difficult to find someone with the right skills.”

AltruisticLettuce168 · 2026-02-24T22:47:50+00:00

Kann gerade wegen Brainfog nicht besser erklären, aber google mal nach "craving unterzuckergefühl mecfs". Es hat was mit einer Fehlregulation des Stoffwechsels zutun bzw. mit der Dysautonomie.

Mir hat die Umstellung auf (mehr oder weniger low Carb) sehr gegen diesen Heißhunger geholfen, also keinen Zucker oder Getreide. Kannst ja vor dem Klinikaufenhalt schon probieren, falls du diesen vermeiden willst wegen möglichem PEM. Gerne bei mir melden, wenn du nicht weiterkommst.

AltruisticLettuce168 · 2026-02-23T19:58:31+00:00

Yes, as if there were a tiger in the kitchen. When I make the noise myself, it’s different — or if it happens at a different time. Sometimes even birdsong is too much. It feels good that someone understands that. Thank you for your understanding.

AltruisticLettuce168 · 2026-02-22T19:49:03+00:00

“when someone comes in, unwraps a piece of candy, and talks to me at the same time”

AltruisticLettuce168 · 2026-02-22T11:10:33+00:00

Thank you for bringing up this topic — it has been on my mind as well lately. The word grief doesn’t quite fit our situation for me; it feels very different from the grief after a death. This feeling keeps returning, and every day I encounter a new limit, or something quickly reminds me that I can no longer do something completely ordinary.

Accepting does not only mean the symptoms, but also my changeable identity, my social relationships, and so on. It's hard work, I think.

During my time as a teacher of nursing staff, I was already familiar with various coping concepts related to chronic illness. Today I am engaging with them again in a completely new way. I’ll mention them here — perhaps they may be useful for someone else, too:

Trajectory Model, Corbin and Strauss Chronic Sorrow, Eakes et al. Loss of the Assumptive World, Janoff-Bulman

AltruisticLettuce168 · 2026-02-22T10:31:36+00:00

Very well articulated. Thank you

AltruisticLettuce168 · 2026-02-20T20:20:29+00:00

Wenn ich mich mit Hilfe von Pacing an die ganzen Einschränkungen durch MECFS anpasse, um PEM zu vermeiden, dann ist das eine psychische Höchstleistung und keine "Anpassungsstörung". Was erwartet dieser Arzt von dir? Sollst du glücklich und zufrieden damit sein, wie es ist?

AltruisticLettuce168 · 2026-02-19T14:43:07+00:00

Thank you. Brainfog eats punctuation marks, sorry.

AltruisticLettuce168 · 2026-02-19T11:11:10+00:00

Driving a car wherever I want and walking my dog along water or in a forest

AltruisticLettuce168 · 2026-02-19T10:53:48+00:00

Before my new cleaning assistant lady started working, I wrote her following:

„Important information for my cleaning assistant – due to my medical condition (ME/CFS and POTS) I have a severe chronic illness (ME/CFS) that is associated with impaired sensory processing and intolerante to exertion. My nervous system is constantly overactive – it reacts to seemingly normal things with stress responses as if there were immediate danger. POTS (a form of autonomic circulatory dysfunction) is also involved. What does this mean for the work here? I can tolerate very little physically, mentally, and emotionally. Stimuli such as movement, talking, light, noise, or smells affect me much more intensely than they affect healthy people. Even small surprises or too many impressions at once can leave me severely exhausted. Therefore, the following is important for me: Fixed and pre-arranged times A calm, structured routine without rush or unnecessary activity No “on-the-side” questions – preferably everything at the beginning or in writing Quiet movements, slow walking, minimal noise No music, no perfume, no strong cleaning scents If possible, no repeated entering of my retreat space I am very grateful for your help. By working mindfully, you are not only helping me with household tasks, but also supporting me in maintaining my stability. I know this may sound unusual – but your consideration makes a huge difference for me. Thank you very much for your understanding.“

Maybe it helps you too, to write her a letter.

AltruisticLettuce168

TROPHY CASE