A list from lived experience
Content Warning: Mention of Sex/Masturbation, unalive, chronic illness, many of these tips require time, support and money.
Note: this is a living document. Last updated: 10/11/2022.
I have created this page as, due to having long COVID I end up giving people advice, or linking them to my longer form blog. I am a little exhausted by repeating myself and not everyone has the energy to read all that (fair), so I have made this page to save time and, hopefully, give people a helping hand.
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 am currently classified as having 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.
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. I realize not everyone will have the time or resources to do what I am doing, so I would like to at least contribute in some way to prevent others going through what I, and many others, are experiencing.
Making this list was incredibly taxing. If you want to contact me about it, please consider your wording carefully. My combined disabilities have made me want to unalive so much I have written a will and looked into joining an assisted dying society, and I am less able to emotionally regulate to send you a polite response.
So yeah, you’re welcome.
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 have been prone to symptoms of these before I knew what they were, and health problems run in my family – however, I’ve always been longed off by doctors myself due to my mental health issues etc. I believe my long COVID may have worsened symptoms I had already been struggling with prior with the added bonus of exercise intolerance. I am aware of the overlap, but not educated enough to speak for all communities. The parallels are STAGGERING and long haulers owe much to these communities. I say this because I’m asking people with these conditions not to come for me saying ‘we knew all this’. I know you did, and I would have benefitted from learning how to better take care of myself from these communities had I had the knowledge available to me.
Also, the symptoms of long COVID are very varied, what helps me may not help you and vice versa. I can only help using my limited lived experience perspective.
My wonderful friend Simone pointed me in the direction of many of these resources! Thank you so much!
Note: I have not linked suggestions as I don’t want to look like I’m selling things with affiliate links etc.
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 grot hair out of your face when you’re too tired to wash it.
- Anything that makes housework easier (maybe a roomba, perhaps a heated clothes rack for all those damn pajamas you’re gonna be washing, maybe some hired help (i wish)).
- If you have a garden for summer and some furniture or robust outdoor pillows/bean bags, that’s great cause you can rest outside.
- 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 to get your greens when you can’t really 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.
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. Note: as someone with PTSD and autism who has phases of being touch-averse, I find geting a massage from a trusted professional helps me be less afraid of human contact.
- Get something easy you can pleasure yourself with (like a wand or sleeve), because even if you have the urge to nut, you may not have the energy to bang and sex can trigger your exercise intolerance (be careful). If you are a sexual person and able to enjoy pleasure, having a little cum can be good for you!
- Practice SAFE (low-intensity) sex with someone you TRUST. You can get SERIOUSLY INJURED if you are too vigorous.
- It is especially important not to engage in oral sex if you have mouth sores/are in pain.
- Deep throating can especially make symptoms (TMJ disorders, ear/nose/throat pain, breating difficulties) worse.
- Make sure you treat sex like a team sport: take breaks, sip a drink, communicate and BREATHE (is this a good metaphor? idk i never played a team sport).
- Engage in low energy kink (including bondage, so you can’t move too much when getting rammed).
- Make sure you leave time to rest after banging.
- Appropriate aftercare (kisses, cuddles, verbal reassurance, closeness), your emotions may be particularly vulnerable.
- Make sure they care more about your wellbeing than nutting!!!!!!!!
- Solo RPGs (pen/paper can help reduce technology exposure).
- Portable gaming system and cosy games that take minimal cognitive effort (if possible).
- Meditation tracks (I like Headspace).
- Something to do with your hands/brain to replace doomscrolling (I have Animal Crossing and fidget toys).
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? (I’m dreaming of a pimped ride.)
- 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.
- Note: Heathrow is fucking horrible about providing booked accessibility, especially connecting flights. Expect trouble.
Accessibility & Accomodations for work:
- It is likely you will be able to do much less than you could/would like to. f you have long COVID, it’s likely you are the kind of person to overwork anyway. Now is the time to learn not to lean on productivity as a coping mechanism (he says, typing out this fuckin list – don’t do as I do LOL). Most people don’t get paid fairly, see your decrease in productivity as a form of achieving fair compensation.
- Take options to work on home when at all possible.
- Lean on existing/official diagnosis for support if you have it. I don’t have as much official confirmation of my long COVID, so I use my mental illness diagnoses to get my foot in the door (cause i could have been asking for help for years tbh), then add long COVID accomodations into exising support.
- 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.
Lived Experience Resources
Ben Coomber’s Blog about Long COVID recovery – I found this very useful as a blueprint to follow, however, his twitter shows that he is a wannabe influencer who posts bullshit takes and has likely bought a lot of his followers (minimal engagement). We also do not know how much support he had from his wife (cooking, chores etc), so this blog may be unrealistic and unobtainable for many. The treatments are also costly. I have, however, found it useful, and it’s nice to know that people HAVE recovered. His holistic approach is also invaluable. I haven’t looked at his content other than this post and his twitter, so hopefully he’s less of a bellend than his social media presence suggests. This post is a great place to start, just be mindful about what you take from it. I found a lot of my resources/treatment by starting here.
#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.
I met Nicola from Exhale, who is a breath work practitioner and massage therapist. She advised me that she had severe long COVID and fully recovered by using breath work. This advice got me started on breathing exercises, which I try and do regularly.
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).
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). I try and do this 3x per day, or take a break when I’m out doing something strenuous I shouldn’t be doing (like dancing, which fucks me up).
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 benefits. If you need to go outside, sit outside your front door in a camping chair. 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 decide to move when you have COVID, get out of my inbox because I’m done suppressing the urge to tell people not to be an idiot when there is scientific evidence to support this now.
When we think we are relaxing: scrolling, reading, playing games, even practising mindfulness, we are not actually relaxing. To properly heal, we have to fully reset our bodies and entirely rest. Yoga Nidra is a practice focused on ‘waking sleep’. It’s like a guided meditation, often you don’t have to pay full attention, and it can be less strict than mindfulness, which requires a lot of focus and energy. Yoga Nidra can help you get to sleep, aid restlessness, or give you an experience of true relaxation. I find it doesn’t always work, but when it does, I find it more restful than actual sleep (which I find less restful due to long COVID and PTSD etc). When you have long COVID, rest is arguably the most important aspect, so having Yoga Nidra as part of your toolkit is a CHEAP way to make progress.
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.)
I literally don’t care if it’s a placebo. Placebo’s work. I think it’s also deeply colonialist to write off any health practices that aren’t based in Western medicine. We also do not know how anti-depressants work, and many of them are much more harmful than acupuncture (though they have their place) and are handed out quite easily on the NHS.
Those pesky emotions
Basically, you’re more likely to get long COVID if you’re already a bit fucked up. It might just bring out a lot of things that are already there, and make them worse so you’re unable to cope with them. Long COVID made my autism harder to cope with as I am less able to mask and have a lower window of tolerance for certain types of stimulation etc. Dealing with stress also makes it more difficult to recover from COVID, as your body needs to rest and heal.
You also might have a lot of feelings come up surrounding your condition. I often feel very bitter about my decrease in the quality of my life, resentful of people who can do more and mourn the health I once had (this health was brief, as I have a history of various physical/mental illnesses).
The conditions of living a life limited by long COVID can obviously 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, but do NOT cave into hopelessness. I have to believe we can get through this.
Tl; dr: the mental illness cause by COVID is social, emotional and biological.
What helps with my pesky emotions
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 (finally getting queer/neurodivergent led trauma therapy – it’s hard though).
- Massage + safe and consensual physical touch.
- Regressing emotionally: stuffed toys, onesies, childhood films.
- Having stronger boundaries: relinquishing unnecessary responsibility/accountability, putting myself in less situations where I have to mask or emotionally regulate too much, taking time without any communication.
- Having a kitty as company, as I am often unable to socialise (people always suggest getting a pet/talk about how beneficial they are, but I can only cope with having Pixel because I have a partner to help look after her. Looking after a pet requires time and energy that I do not have sometimes).
- I try and romanticise my life when I can: light candles, be cosy, make my surroundings bearable.
- Doing things like getting tattoos, having my hair did and buying clothes (even getting dressed sometimes) helps me hate my body a bit less and feel a bit more in control.
- Soft things to throw when you get mad at everything.
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.