169 - The Roots Below: Five Essential Themes for Long Covid Recovery

Not that there are any bad questions , but it is so useful to know what you , the listeners , want to know , as that can help to guide me in my episodes and my searches for guests and topics , so I'm going to answer some of them today .

Previous questions have also formed the basis of past podcast episodes too , so if you've got something you would like to ask me , please drop me a message . You can do this by using the fan mail function linked from the show notes of every episode , by contacting me on social media , by email or through the website , which is longcovidpodcastcom

. You can also give the podcast feedback by using the feedback form . I think it's linked from the website home page , but I will drop a link in the show notes of this episode too . This form can be completely anonymous if you wish it to be , and it is all useful to me . So let's dive in Now . I'm going to start with a disclaimer .

Every episode has a disclaimer anyway , but I am not a doctor and this is not medical advice . I'm not giving medical advice .

What I am doing is speaking from my own lived experience , my professional knowledge in some areas where relevant , and what I have learned or observed from interviewing and speaking with hundreds of people over the course of my own long COVID recovery journey and through making this podcast .

So a lot of the questions centred around recovery themes and the possibility of recovery . So that's what I'm going to speak to today . Everyone's recovery is different , of course , but there are themes , and quite obvious themes to me anyway .

So the two questions I'm going to take as today's prompt and I think can largely be answered together , are number one given your extensive experience with recovered individuals , what would you say has been the one treatment intervention habit that leads to recovery ? And number two , what is the common link between recovery stories ?

So I feel like that sets us off in quite a nice direction . Now , I don't think there is one treatment or intervention that leads to recovery . There's not one thing . Everyone is very different and therefore it's not as easy as saying , oh , just do this .

I mean there's no , just in recovery anyway , and if there was just one thing , it would be really easy and everyone would be recovered by now , we think a long COVID or ME-CFS recovery journey is a very personal thing . It's very individual and it's about finding the things that work for you as an individual . What are the pieces of your puzzle ?

But don't lose hope , because that's where I come to recovery themes . So I've pulled together five themes which I think underpin all of the recovery stories that I have interviewed on the podcast and , I think , all of the ones that I've come across elsewhere too . So theme number one consistency .

Consistency means consistently putting in the work , whether it's a breath practice , whether it's journaling therapy , acupuncture or whatever it is that's helping you . Consistency doesn't mean pushing yourself . It means finding what you can do sustainably every single day and then doing it Even on the days when it doesn't feel like you're getting anywhere .

I love that visualisation of the roots underground . It sometimes does the rounds on Instagram and Facebook and other social media channels . It's a picture of what's above ground a small plant that doesn't really appear to be growing , and then what's below ground , the roots that are growing , spreading , preparing . We put in the work

and often a lot of it isn't visible , a bit like a lot of the illness isn't very visible to other people . But those roots eventually will allow the plant to grow . So all that effort that's felt unseen will eventually allow you to really feel it . So consistency , theme number two mindset . So now I'm going to dive into the mindset debate now .

I don't think that positive thinking alone is going to heal you . It's not so simple as turning that phone upside down and it's patronizing to say otherwise . However , mindset is important . Dr Sarah , who I actually met for real today , in her recovery story that we recorded around a year ago , she put this beautifully .

She describes , and I quote if your cells are surrounded by all these stress hormones and all this fear and negativity , then it's not a very healing place for your cells to be bathed in .

But if you can bath your cells with none of the stress hormones but more positive emotions , oxytocin and dopamine and all these things that your body releases when you're thinking of more positive things , things that you're grateful for ,

then the mind was thinking well , surely that's a better environment for recovery of my cells , and I love that . I think that's a really great way of putting it . So it's more about creating that healing environment .

I also think that belief is important Belief in recovery , belief in life beyond or , if you feel like that's too much of a stretch at the moment belief that things can get better , even just a little bit . So that's why one of my recovery themes is mindset . Belief that things will get better is going to help us to put in that consistent work .

Back to theme number one . It's going to make it easier for us to look for things that will help . That's theme number three and four Search for the next piece of the puzzle . It helps us to mentally navigate the ups and downs of this illness , because no amount of positive thinking will iron out the peaks and the crashes .

But knowing that it will pass and things will improve is a huge help when we're in that pit of awfulness and that's not denying heavy emotions . When they come up , it's important to give them space , but it's also a lot important to allow them to move through . I think this mindset also helps us to be open-minded about what might help .

So when I became unwell with long , with COVID and then long COVID , sorry in March 2020 , I was very much of the opinion that doctors were akin to gods . You know , if we got sick , they fixed us . That had been my experience up until then .

However , I was in for a bit of a surprise perhaps , like a lot of people who found that the doctors didn't have the answers , even if you were lucky enough to get one who would listen to you . And there are lots of wonderful empathetic doctors out there . Unfortunately , there are some who aren't .

But even the really great empathetic ones , many of them still don't really know what to do . The things that I used to find my way out of long Covid were things that I would have roundly dismissed five years ago , and many doctors probably would too , even now .

So I think being open-minded to what might help Just because it wasn't suggested by a doctor doesn't mean that it's not helpful . Of course we need to do our due diligence , but not dismissing something out of hand because it doesn't fit into your current worldview , because that can change . I know mine certainly did .

Theme number three Understanding Until I started to understand what was going on in my body , I was doing all the wrong things . Maybe some of us do some of the right things , but because we don't understand why we can do them in a way that isn't helpful or maybe isn't targeted . So we don't get the most bang for your buck , so to speak .

And when we're low on energy , we want to get the most bang for your buck , so to speak , and when we're low on energy , we want to

get the biggest bang for our buck . So starting to understand a bit more about the nervous system was a huge light bulb moment for me , because it allowed me to start to know what strategies might work and how to recognise that they were working or not . For example , if I was doing a breathing exercise that made me panic , then it wasn't helping .

If I did it a little less , then maybe I hit the sweet spot and it allowed my body to come out of that danger response and into a calmer place . Having some understanding of what's going on , even if you only believe it's a small piece of what's going on , is hugely helpful , and it also makes things feel a little scary , a little bit less scary .

Long covid me , cfs and other health challenges are isolating and scary experiences . Well , they certainly can be , even if we feel that there's not a lot we can do about it . Understanding what is actually going on can bring down that sheer terror even just a notch , and that in turn will actually help our nervous system even just a little .

And also understanding triggers what is it that tends to trigger us ? Are we able to reduce or mitigate that at all ? Understanding Knowledge is power , and understanding leads to number four . Theme number four build your strategies . Start to make a list . Explore different strategies .

Some people may find that medications fit into this , that they are strategies and they are helpful . I'm not against them at all . I didn't use any , but that was partly because I didn't have any access , so I didn't have a choice .

Plenty of people have found that they are helpful , so long as we don't look to them as a cure , because they're not More of a bridge . In fact , my interview with Dr Sanjay Gupta , who I will link in the show notes , is a POTS specialist working in York in the UK , and he described medications as such a bridge .

So if you're taking some medication that helps bring your heart rate down , for example , it doesn't mean that

you'll be on it forever , but it might help you to be able to access other things that will help , that might then allow you to come off the medication again , always with the doctor's advice . Your strategies might be balancing hormones , it might be acupuncture , hyperbaric oxygen , diet strategies .

For me , the first thing that helped me was breathing , but breathing in a way that worked for my body . So finding that first thing was so key . I also think it's important not to dismiss the little things . Just because it's a small strategy doesn't mean it might not have a big impact .

A lot of the recovery stories I hear are actually consistently doing the little things and that building up over time to have a bigger impact . So the little things add up to the big things . I think with all strategies , it's having a list . What works for me ? Does it feel good in my body ? If it doesn't , then it's probably not helping .

No pain , no gain doesn't really work here . Are there times when it works and times when it doesn't ? What's the pattern ? Hint , it's probably related to your nervous system state . So have a list , some sort of routine or structure so you are able to be consistent , but make it work for you .

The schedule that I've written for me won't work for you Because we are different . Mental health also comes into strategies . I'm a big fan of having a therapist . They're amazing . I wish I'd had one all my life and I cannot imagine not having mine even now , nearly two years on from recovery . Mental health is so important .

If we're having physical challenges , we will also have mental challenges , and having mental health strategies and support , whatever they are , for you will help us with everything I've mentioned so far . So please don't abandon mental health , because it's not all in your head . It's not all in your head , but mental health still matters .

And theme number five a healing environment . I think theme number five is being mindful about what we put into our bodies , so that might be physically , food , supplements , medications , hydration what is good for your body and that's your body , not someone else's , yours . Are you eating a lot of inflammatory foods ?

Are you cutting out foods that actually would be helpful ? Are you doing a diet that someone said would help but you're not actually noticing any difference yourself ? Are you taking 50 different supplements because someone on a Facebook group recommended them ? But also the air we breathe how are you breathing ? Is it the best way for your body ?

Hint , probably not , which is why I do the work that I do . The breath is the fastest way

to change the biochemistry of our body , and we can only survive approximately three minutes without oxygen . So our breath should be a priority . But what are you consuming elsewhere ? The people around you , the media you're watching or reading ? Are you a member of 20 different support groups and you're seeing a lot of negative stuff every time you scroll Facebook .

Are you scrolling Facebook too much ? Could you mute some of those groups ? Could you watch less news ? The world is a scary place , but can you do anything about it right now ? And is knowing actually helping ?

A big recovery theme is consuming less media , or even none , and that doesn't mean that you can't come back to some of that in the future , but for now , maybe it would be help to reduce that . And also , what are you thinking ?

Our thoughts do affect our behaviours , and being mindful of what we're telling ourselves is something that is worth being aware of , reframing things .

If we're saying negative things to ourselves , it's not dismissing how we're feeling , but choosing a different perspective the glass half full versus the glass half empty , and that can really help on a long and difficult journey such as long covid , asking ourselves what is it that my body needs right now ?

What is the best thing that I can do for my body and this is a really great skill for life beyond illness . So that's the recovery themes that I've picked out today . There may be more , but that's what I've picked out and I think , the main theme of the themes I've decided to have an overarching theme because I can is empowerment .

That , even amidst what feels like complete chaos in our body , focusing on what we can do , is important . There's a lot we can't , but what can we do ? Taking any steps that will help is worth it .

1% is better than none , and if you add up the 1% you get more percents , little steps adding up to those bigger wins , and maybe you get to a level where you can access other strategies that you weren't able to access before , but now you can , and maybe they will help more , and to the point where you can do a few more things .

That actually gives you a little bit of enjoyment too . And that leads me on to one more question around brain training or brain retraining . This one goes Hi , jackie , wondering about your thoughts on brain training or brain retraining . This one goes hi , jackie , wondering about your thoughts on brain training .

I just finished your breathing course and plan to sign up for the next one . I plan to keep breathing , but wondering if adding on brain training as a part of their recovery .

It wasn't the whole story , but it was something that helped them to have maybe a mindset shift which then influenced the strategies they tried , or that it helped them to transition out of the illness at the end .

So maybe early unlocking or a final piece of the puzzle I've seen people find a variety of different approaches useful For me . I did find that early on I had a mindset shift that other people had recovered . Therefore I could too . And that was pivotal for me Because I didn't even realize you could recover until I met someone who did .

It gave me that hope and belief and even if I lost that from time to time , it gave me something to come back to Also once I was nearly there with my recovery . In hindsight I didn't realize that at the time it helped me to look beyond the illness and that was really helpful For me .

After three years the illness had become so much a part of my identity as it does and it was challenging and it felt very unsafe to let go of that as I saw so much improvement and then transitioned out of the illness .

So that's not to say it will be the same for everyone , but that kind of transition out I did find helpful to have some of these strategies . Personally , I don't think that brain training is a cure-all , but I do think that , alongside other strategies and that's whichever ones work for you it can be a useful addition .

Whether you want to sign up to an expensive programme or not is up to you , and if it's even possible for you . A lot of people find the Curable app useful because it's something that you can use as and when , and I think it's a bit more affordable than some of the more expensive programmes . I'm not affiliated with that in any way .

That's just what I've heard people mention . If it is something you're interested in looking into , check out some of the reviews , asking advice from others who you trust , who have done them or who know people who have .

And I think , most importantly , whether it is a brain training thing or whether it's a different strategy , it's finding something that is the right fit for you To be . The perfect program for someone else doesn't mean it's going to be perfect for you , because this whole journey is so individual . So here endeth my observations .

Have you seen improvement or recovered and you agree with me or even disagree ? Do let me know , and if you've got questions , please feel free to get in touch . So the few things that I've mentioned I will drop links in the show notes today . I'll be back with a wonderful guest next week . I haven't decided who that's going to be yet , but they'll be awesome .

Until then , keep listening to your body , keep doing those things that help . Keep doing the one percents , because they do add up , even if it's not in a totally linear way .