A list from lived experience
Content Warning: mention of sex, unalive, chronic illness. Many of these tips require time, support and money.
Note: this is a living document. Last updated: 16/05/2023.
I am not a qualified medical practitioner or trained in any way. I’m just a researcher, lucky enough to have resources available and desperate enough to try most things.
I have had long COVID since around Jan/Feb 2021, and it has fluctuated in severity, and worsened after I tried to return to exercise. I have multiple disabilities, and my long COVID in combination with my mental illness has become severe enough for me to quit jobs, turn down opportunities, limit socializing and stop any physical exercise except short walks. Sometimes I choose to be more active, then pay the price for weeks afterwards. I have been vaccinated, however I caught the disease before vaccinations were available. The boosters, however, do seem to temporarily alleviate my symptoms.
For transparency, I have started tweeting a thread updating my ‘recovery’ progress on a weekly basis, which you are more than welcome to check if you would like to know more about which treatments I am finding useful.
Feel free to contact me, but please do not expect a response.
Disclaimer: I realise that long COVID community research draws on a lot of ME/CFS/Fibro knowledge and these communities are extremely overlooked by medical treatment and research. I am aware of the overlap, but not educated enough to speak for all communities. The parallels are STAGGERING (they may be the same) and long haulers owe much to these communities.
Also, the symptoms of long COVID are very varied, what helps me may not help you.
I also don’t necessarily have all these things myself, the list includes both things I use and things I would like.
- Help for regulating body temperature: hot water bottle/microwaveable heat pack (non-rubber if you are sensitive to smell) or heated blanket /cooling pack.
- Tissues for sinus issues and crying.
- Pillows, blankets etc (a body pillow/triangle wedge may be useful for sinus issues or acid reflux problems).
- Lots of pajamas or leisure wear (you’re gonna be inside a lot).
- Facewipes, wetwipes and dry shampoo for when you’re too tired to wash.
- Soft, elastic hairband to keep your hair out of your face when you’re too tired to wash it.
- Anything that makes housework easier (maybe a roomba/a hoover that isn’t heavy, perhaps a heated clothes rack to dry your pajamas, maybe some hired help if you can afford it).
- If you have a garden for summer and some furniture or robust outdoor pillows/bean bags, that’s great cause you can rest outside.
- N95 facemasks or comparable, hand sanitiser, sanitising wipes (to lower the odds of reinfection).
- A big water bottle (metal is best) to keep you hydrated and stop you from having to get up too much for refills
- Berocca/vitamin water, rehydration powder.
- Frozen smoothie packs/bottled smoothies to get your greens when you can’t cook
- A microwave for easy meals/easy meals
- Consider your tummy may respond to food differently after getting COVID, keep an eye on it and make a food diary if you have the energy.
- Subscriptions to food delivery services if you order enough for it to save you money. (I have some through O2 priority and Amazon Prime, sometimes I order takeout in bulk to make it worth the money and eat it over the course of a few days).
- Little treats!!!! We should be reducing inflammation, and having healthy diets but this is hard to maintain (time/money) and honestly if cake gives you joy, it can make life a little brighter sometimes. We should not deprive ourselves of pleasure.
- I tried to do a grain-free meal plan as my gut test flagged a sensitivity, but it was too much stress. You may be able to manage a lot of symptoms by using a meal plan or working with a nutritionist, but it was too high-maintainence for me.
Reclaiming Your Body (when energy is available):
- Hydrating skincare/bedtime facepacks
- Stuff for manicures (can be tiring tho)
- At home ‘spa’ days (or real ones if you can afford)
- Bath bombs/epstom salts for the aches.
- I found that full spectrum CBD helps me cope with both mental/physical symptoms and helps me sleep better. If you purchase, find a good supplier – do not purchase from a pharmacy.
- Clothes you feel good in at different sizes as your weight fluctuates -> maybe get dressed sometimes if/when you have the energy. You could even just take a picture of yourself wearing them inside to appreciate how spiffy you look.
- Grab a physio/relaxation massage if possible. Self-massage (and stimulating your own acupuncture pressure points) is good but tiring.
- Solo RPGs (pen/paper can help reduce technology exposure).
- Portable gaming system and cosy games that take minimal cognitive effort (if possible).
- Visual novels can be low effort games, if you’re able to read.
- Meditation tracks (I like Headspace).
- Something to do with your hands/brain to replace doomscrolling (I have Animal Crossing and fidget toys).
- You may not feel like it, but you may be able to if you go slowly and are safe. It’s still exercise so it can be a risk factor.
Accessibility & Accomodations when out and about:
- A smol fold-up stool to sit on if you need to walk somewhere and need a lil rest (or a plastic bag so you can sit down on rained-on surfaces w/o getting a wet ass).
- Don’t be afraid to make accessibility requests (wheelchairs etc) even if you feel like you CAN do something, it’s better to rest, as it’s easy to overdo it by accident.
- Consider a mobility scooter?
- See if you are eligable for any disability benefits from the government/social care from the local council –> this can be a pain in the ass to organise tho.
- A sunflower lanyard if you need help out and about.
Accessibility & Accomodations for work:
- It is likely you will be able to do much less than you could/would like to. Now is the time to learn not to lean on productivity as a coping mechanism. Reduce work as much as you can afford to.
- Take options to work at home when at all possible.
- Lean on existing/official diagnosis for support if you have it, get your doctor to write a note for long COVID if poss.
- If you can, get access to ergonomic furniture like a chair, mouse, small keyboard and a footrest.
- Warn people about your brainfog in your email signature, use out of office liberally if you can. I don’t know if it makes a difference, but it’s worth a punt.
- Take easier options when possible (like keeping your camera off etc).
- If you can, use a laptop to work in bed/lying on the couch when you can.
- Cancel things if and when you are able.
Proceed with caution when taking anything not prescribed by your medical professional, and check interactions:
LongCovidPharmD is the best place to check for information on supplements.
Healthpath provide a functional medicine gut test with supplement support. (It spensive tho.)
Degradative Effect of Nattokinase on Spike Protein of SARS-CoV-2
Nutraceutical Approach to Preventing Coronavirus Disease 2019 and Related Complications
My most impactful supplements have been nattokinaise, iron (once every 48h) and vitamin D.
Lived Experience Resources
Ben Coomber’s Blog about Long COVID recovery – useful, but expensive and high maintainence. Take what’s useful, leave the rest behind.
#TeamClots on twitter is the place to go to read about lived experience/pick up tips and see what people are doing. Approach with caution, there’s a lot of (justifyably) very unhappy people on here, so try not to spend too long looking. You may find community, or it may be harmful (I tend to avoid it).
LongCovidPharmD posts surveys, studies and research on twitter. The responses to these tend to be more useful/interesting than unfiltered #TeamClots posts.
Long COVID and exercise
Do NOT do exercise when you have COVID or when you are recovering from long COVID. Even a short walk is not worth the benefit when you’re acute or recovering from an acute infection. Rest MORE than you think, more than you ever been told, and for longer than you think is necessary. You may not be able to tell when you are fully healed!
If you do start activity again, go slow. I tend to stop my activity when my heart rate takes too long to recover.
Why Exercise Doesn’t Help People With Long COVID
The Relationship between Physical Activity and Long COVID: A Cross-Sectional Study
Long covid may set you back a decade in exercise gains
Breathing exercise demonstrated by a doctor to help clear the chest during an active COVID infection.
Practical breathing exercises for long COVID (admittedly, this is still on my to-watch list).
The Power of Breathwork for Long Covid | The Most Underrated Tool for Managing Symptoms
Coherent breathing for long COVID: download the free IBF app and programme it to breathe in/out for 5 seconds each. Breathe in/out through the nose. Use diaphragmatic (belly) breathing – your tummy should go out when you breathe in and in when you breathe out (think of your tummy as a balloon that you are filling). 3x a day is a good baseline.
Note: too much belly breathing can aggrevate bladder symptoms, so use with caution.
Yoga Nidra may not work for everyone, but it’s designed to help us access relaxation, and a form of waking sleep. It’s yoga for the mind.
The Yoga Nidra network has an archive of free practices, as well as a tailored long COVID support session.
Improvement in Long-COVID Symptoms Using Acupuncture: A Case Study
Acupuncture in Multidisciplinary Treatment for Post-COVID-19 Syndrome
The Role of Acupuncture for Long COVID: Mechanisms and Models
Hyperbaric Oxygen Therapy
Hyperbaric oxygen therapy for the treatment of long COVID: early evaluation of a highly promising intervention
Hyperbaric oxygen for treatment of long COVID-19 syndrome (HOT-LoCO): protocol for a randomised, placebo-controlled, double-blind, phase II clinical trial
Is Oxygen the Answer to Long Covid?
Treatment Centre: A Breath for Life Charity in Morecambe, UK
Stress Levels and Emotions
A history of trauma/fatigue issues can increase risk for long COVID and long COVID and make existing issues harder to cope with, highlighting them. If you are more prone to stress, it can also be harder to recover.
Psychological distress before COVID-19 infection may increase risk of long COVID
Study suggests history of childhood traumas may increase the risk of long COVID
Study finds link between poor mental health and long Covid
The conditions of living a life limited by long COVID can increase mental illness, but I think that COVID can also cause this at a biological level (as it can impact sleep/dreaming/cause hallucinations etc). If I find a source for this I will link it at a later date.
It might seem counterintuitive, but try and block long COVID articles from coming up on your newsfeeds and limit who you follow. You do not need to know to read in detail about the increased suicide risk. Do not doomscroll long COVID stories, it will not help you. Be careful about what you access.
Learn to acknowledge where you are at, and accept your limitations. I’m getting to the point of having tried everything and after my latest treatment will not be trying anything new.
The mental illness caused by COVID is social, emotional and biological.
Suggestions for Coping with Feelings
Some of this is money, so it depends what you can afford. Sometimes it doesn’t always work. Sometimes you just have to try and sleep and wait for it to pass.
- DBT workbooks help me. I have some listed on my mental illness resources page.
- Therapy can help, but it can also make things worse depending on your context and trauma history.
- Massage + safe and consensual physical touch.
- Comforting objects and low stakes media.
- Having stronger boundaries: relinquishing unnecessary responsibility/accountability,
- Pets can be good company, but are hard work.
- Focusing on simple cosy feelings: light candles, be warm, have nice drinks and treats.
- Getting dressed sometimes can help you feel normal.
- Ways to feel and process anger physically (throwing soft things).
Somatic experiencing is a body-led therapy which works to process emotions, calm the nervous system and is aimed at treating trauma and disorders such as PTSD. This can be helpful as COVID can disrupt the nervous system and somatic therapy helps to regulate this.
This therapy tends to be best done in person, and it can be difficult to find a practitioner, but I have included it in this list as it helps me function.
Basically, long COVID has a lot in common with pre-existing syndromes that have not been well respected/researched/treated by much of the medical community.
It may be caused by inflammation, gut imbalances, autoimmune response or a mixture of factors.
It’s more likely to present in/is worse for people with pre-existing conditions which may have been manageable before. IMO you are especially at risk if you have a neurodiversity that interferes with reading bodily signals, resting and have higher stress levels.
It’s important to rest, try and accept (and grieve) your limitations and take a HOLISTIC approach that includes mind, body and appropriate social care if possible. If you have trouble reading your body, look after it like it’s a machine.
Long covid: “Holistic” approach is best, given range of symptoms, say researchers.