I have severe ME and am 99% bedbound. This is a list of things that have helped me manage my illness, track my health, ease the pain or bring some joy into the day.
Incredibly helpful wearable tech that's aimed at people with MECFS or long covid. It's changed my understanding of my own pacing and thresholds.
Visible - Activity tracking for illness, not fitness.
While the text is a bit old there’s lots of very specific advice around pacing I found helpful.
Classic Pacing for a Better Life with ME
I have 4 of these I cycle through as they don't stay cold as long as I wish they would but they're a good blackout and cold combo that's low spoons to use.
Migraine Relief Cap - Reusable Headache Hat
I've found electrical VNS devices haven't suited me and made my POTS worse but the sensate in more gentle and works for me to relax and calm when I'm agitated.
Stress Relief Technology for Meditation & Relaxation | Sensate
Wireless BP monitor is handy for doing sit-stand test and auto saves readings to your phone.
OxiPro BP2 Smart Blood Pressure Monitor
I like the loop quiet 2 and the loop dream earplugs for comfort and sound blocking. I sleep in both but the dream ones are more squishy for side sleepers like me.
Loop Quiet 2 Ear Plugs - Reusable Noise Reduction
Great deals on quality face masks in the UK
Face Masks | PPE Protection | The Face Mask Store
I found these weekly pill boxes to be a good size and shape
Weekly Pill Organizer Box 4x a Day (Pink)
This has saved me so much effort when sorting my medicines
Pivotell Pill Popper for Blister Packs
I use this in my bedroom and on the quietest setting is almost silent and can leave on all the time
CONOPU Air Purifier for Home, CADR 230m³/h
Really useful any time I need to go anywhere like a doctor’s appointment
I really like these body wipes for difficult days when showering isn't possible
FreshWipes™
Another supplement supplier with lots of choice - 20% off via the link.
20% off at iHerb - Vitamins, Supplements, Natural Health Products
I love the socks! Bamboo clothing that's soft and comfy and has good ethical standards
Get 20% off luxury bamboo clothing at BAM.
I've been using this for years and it's especially good for large purchases like insurance and washing machines etc can really add up.
Topcashback - really helpful for saving up the pennies with anytime you buy
I use this every day for hours. I like it over spotify for it's integration with alexa next to my bed and all the sleep playlists on it are helpful for the days when I am in and out of sleep.
Amazon Music Unlimited - Sleep Playlists
A brilliant passionate long covid doctor who cares about her patients.
Dr Binita Kane - The long covid clinic
Dr Gill has been great with me, so professional and caring and ready to try things to actually help.
Long COVID Recovery Clinic (Leeds and virtual appointments)
A great resource for patients and doctors on ME, long covid and POTS including how to do a sit-stand (nasa lean) test.
