I apologise for the delay in publishing another post. I was on a fairly linear upwards spell of recovery over the past month, but as Sir Isaac Newton famously said ‘what goes up, must come down’. So if over the last month, I was an apple happily hurling skywards in my recovery, well last week was that same apple plummeting down back to earth. I can’t pinpoint exactly when that apple smacked onto the tarmac and splattered its flesh all around, but I don’t think that’s visually necessary for this metaphor. Anyway, what I mean to say is that I started to get comfortable with feeling brighter, and last week that comfort ran out. If you are a long covid sufferer or have a fatigue-based chronic illness, then you’ll know exactly what I mean by this. This got me thinking though that it’s likely the longer you have suffered from a chronic illness, the more cautious you must get when you have these good days. Which sounds quite sad but I believe it’s fundamental for recovery.
New chronic illness sufferers are like puppies. I can only speak for myself but when I have a good day, my internal song choice becomes Eminem's ‘Guess Who’s Back?’ while I swagger around the house. I then proceed to rush around and try to do all the things I usually would do pre-long covid. Have you ever seen a dog do ‘zoomies’? Well if you have, picture that when you think of me carrying out house chores on a good day. However,
I get about halfway done, and I physically can’t do anything else so I make my way over to the sofa. Tail between my legs, the real ‘Slim Shady’ no more, and the puppy is out for the count!
However, since longer-term chronic illness sufferers have encountered this humbling experience time and time again, I imagine they have weathered to it. When they have a good day, they don’t bounce around the place trying to become the person they once were, they remain balanced and stable throughout the day. They may expend a little more energy carefully, but never outside of the energy envelope given that day. They know themselves now. That’s not to say these people get it right all the time, but instead of suffering from a chronic illness, they are now living with one. Perhaps this steady attitude ultimately contributes to a quicker recovery in the long run. After all, the hare lost to the tortoise, didn’t it?
For me, I’ve been suffering from long covid, get granted a good day, run about, then get granted 7 bad days as a consequence of that running, I certainly haven’t been living with it. I’ve been dodging it. Celebrating every day I have less of it. Cursing it when it comes back with a vengeance. That is not living with it. I believe that it is not until you start learning to live with long covid that you can start to really recover. I know I am using lots of metaphors today, but you know when you’re in quicksand (anyone ever been in quicksand?) and Indiana Jones tells you to ‘STOP PANICKING!’ and ‘DON’T MOVE!’, well that’s how I would visualise it. The quicksand is long covid, the panicking is fighting through the symptoms, and the relaxing is living with it. The metaphor can then be continued by saying, in which state (panicking or relaxing) are you going to get out of the quicksand? And we all know the answer to that one. I think this is something chronic-illness sufferers just have to learn in their own time with their own lessons. But like with everything, the quicker you learn it, the better!
The way I would describe my feelings towards being a bit better over the last month was this: although it was nice, I wouldn’t want to be that level of symptoms for the rest of my life, even though they were milder than other days I have had previously. I know I can get my body to feel even better than these past good days. So if this whole journey was a game of ‘stick and twist’, I’d twist, even on my best day since getting unwell. I believe I’ll keep twisting until I can stick at feeling completely symptomless. I believe I am going to get there, in fact, I know I am going to. I just need to start relaxing through the quicksand!
Now that I’ve got that little update out the way, let’s move on to the main bulk of the post and hopefully, there won’t be too many more metaphors! I have decided to break this blog post down into 3 parts:
The Spoon Theory
The Vagus Nerve
Holistic Health
Mainly because I couldn’t get them to link much and also because these are three things that, since learning, have helped me with the whole quicksand situation that is long covid.
The Spoon Theory
I am sure if you are suffering from a chronic illness then you have probably heard of the spoon theory and perhaps use it on a regular basis. But it is my opinion that for the spoon theory to work, everyone in your circle needs to know about it and use it. The spoon theory was coined by a lady named Christine who suffered from lupus. Christine was out at a restaurant with a friend and wanted to explain what living with lupus was like. She used spoons as a representation of the limited amount of energy that chronic illness sufferers have in a day. She gave her friend a handful of spoons and talked through her day, whilst taking away spoons as she went. Eventually, all 12 spoons were used up. For a person not suffering from a chronic illness, this rarely happens (I think my boyfriend has 100 spoons a day!). However, when all the spoons do run out, then that is a crash and the sufferer is not able to expend any more energy. There is a loophole where you can use spoons from the next day to top up your energy, but there will be grave consequences for this. The theory typically uses 12 spoons and these are ‘given’ in the morning of each day. But the catch is, on some days, just to take a shower uses 6 spoons, whilst the next day, it may only use up one spoon. Chronic illnesses really are that unpredictable!
The spoon theory provides a language for people that suffer from fatigue to communicate to themselves and others on how they are feeling. The great thing about the spoon theory is that it helps to monitor, track and evaluate energy levels throughout the day and allows for careful consideration of where to allocate that energy. A ‘normal’ person wouldn’t even think twice about going to the beach in the morning and then going out for lunch and shopping with friends and then ending the day with a spot of nightclubbing. I certainly never used to. But now, with having long covid, even just one of those activities would be too much to do and if it was done, there would be a consequential crash with severe fatigue and symptoms. In fact, for me now, even going to a doctor's appointment is my ‘event of the week’ and I have to plan my days coming up to it with lots of rest in preparation. Which would seem absolutely crazy to pre-long covid Jemma!
I have started to use this theory in everything I do and it is such a fantastic tool to share with family and friends. Instead of just asking how I am feeling, my mum and sister have now started to ask how many spoons I’ve used up or how many I’ve got left. This has been so helpful for me to feel more understood and supported. It is particularly useful when I am required to carry out a specific activity. For example, driving to and from the post office? Well, how many spoons is that activity going to use up? Is it worth giving up those spoons? Is there a better, more efficient way of doing it? Should I ask for help? (still working on that one!). The spoon theory is honestly the best way to learn to pace, prioritise activities and understand your energy limitations.
The Vagus Nerve
The second point I wanted to make was about the vagus nerve. I learned of the importance of the vagus nerve during university and I grew fascinated with it. It is the longest and most complex cranial nerve in the body and extends from the brain stem down to multiple organs, including the heart, kidneys, lungs, and reproductive organs. The vagus nerve also has an extremely strong relationship to the gut and is the connection between the digestive system and the brain, which is known as the ‘gut-brain axis’.
This nerve has many fingers in many pies but it has a leading role in regulating the automatic nervous system. Now, where have we heard of this guy before? The autonomic nervous system branches into the sympathetic branch (‘fight or flight’) and the parasympathetic branch (‘rest and digest’) and I have mentioned it before in other blog posts. Your vagus nerve is responsible for calming the sympathetic branch down by activating the parasympathetic branch. If the vagus nerve is not functioning properly, then a state of constant ‘fight or flight’ can occur. This would wear out the body, causing you to constantly produce adrenaline and lead to adrenal fatigue. Alternatively, if your vagus nerve is intact, but you are under continuous stress then this can also give rise to the same adrenal fatigue, which eventually leads to burnout (I think I may have personally experienced this pre-long covid!).
I discuss in previous posts how many of the symptoms of long covid (increased heart rate, breathlessness, chest pain, gastrointestinal issues, fatigue) can be linked to the autonomic nervous system on the sympathetic branch. I described how research has suggested that nervous system dysfunction could be responsible for this. So if the vagus nerve is culpable for the regulation of the autonomic nervous system, then surely individuals that get long covid have had some sort of issue with their vagus nerve? I will leave the technicalities of that to the professionals as I know this is currently being investigated!
Research has shown that in order to allow for the correct functioning of the vagus nerve and ultimately alleviate long covid symptoms, we must alter our ‘vagal tone’. This is the activity level of the vagus nerve and how it teeters from the sympathetic to the parasympathetic nervous system. If you have a high vagal tone, the parasympathetic nervous system is operating well and a more active relaxation response is possible. On the other hand, if you have a low vagal tone then it is likely that your parasympathetic nervous system is not doing its job at counteracting the sympathetic nervous system. Whether you have long covid or not, it's probably a good idea to reflect on your own vagal tone and consider whether any changes need to be made. To assess your vagal tone, there are various techniques, such as heart rate variability (HRV) analysis and breathing rate/depth. But I am sure you don’t need these results to determine whether you are closer to ‘fight or flight’ or ‘rest and digest’ in your everyday life. I know which one of those I was leaning toward before getting unwell! I discuss later on ways to support the correct functioning of the vagus nerve and increase your vagal tone.
Holistic Health
Now some people may question this and think I’ve gone all voodoo on you. But, holistic medicine isn’t just spices, burning incense, and saluting to the sun. The actual definition of holistic medicine is: ‘the consideration of the complete person in the management and prevention of physical and mental ill-health’. It’s looking at the individual as a whole. Exploring the ‘bigger picture’. Investigating every avenue and tailoring treatment strategies that go beyond painkillers and prescriptions. On the contrary, Western medicine’s focus is to diagnose and treat using pharmaceutical interventions and procedures. Have you ever gone into a GP’s room and been asked questions like “Why do you think you have this?” or “How do you think we can prevent this in the future?” or "How is your overall health?". Because heaven forbid that multiple symptoms could be related to each other in some way! You don’t leave there with a stronger sense of self and a comprehensive view of your overall health, you leave with a prescription for antibiotics.
Please do not get me mistaken. Western medicine has saved and improved so many lives and it is also invaluable in acute and emergency care. A new diet plan and some acupuncture isn’t exactly going to help someone that has been in a car accident. They need lots of drugs and sterile procedures that only Western medicine can provide. I am not saying that we should abandon our medical advances and go back to being naked and hugging trees. I am just saying that with chronic illnesses, I believe there is so much more to it than drugs, resting, and letting your body do what it needs to do. I believe there are certainly ways to speed up the recovery and get out of the quicksand sooner.
If you still erring on the side of caution with this holistic stuff, then let me try to persuade you further. We know how certain foods affect us. We can physically see (or rather smell) how we ‘break wind’ very differently depending on what’s been consumed. So if that’s what going on outside, what on earth is going on inside? We know when we jump into a cold water, we can physically see the goosebumps and can feel our breath get shorter and shallower. So again, if that’s what we can feel then what is happening that can’t be felt? We know just how lighter and happier we feel after a deep-hearted conversation with a loved one. What is happening internally when this feeling arises? There is now such an emphasis on western-medicine, that we seem to forget about the bigger picture. From Amoxicillin to Zolpidem, there is a drug for (almost) everything. We go to the GP, we come out with a newly signed prescription awaiting collection. But at the route of every drug ever developed, there was a plant. Opioids? Opium poppy. Aspirin? Willow bark. Even recreational drugs. Caffeine? coffee beans, tea leaves, cacao pods, kola nuts, and garana are responsible. Cocaine? Coca plant. The many synthetic drugs existing today may not contain any plant extract, but we certainly gathered inspiration from the natural world. Holistic medicine is medicine. This holistic approach now sits at the heart of my long covid recovery and it will keep its place there until I am feeling 100% better and beyond. I discuss some of these strategies below.
At the start of my long covid journey, I saw multiple doctors for my symptoms and all of them said the same thing. All they could tell me was to ‘rest’ and ‘give it time’. I did not leave the appointments with anything else other than a signed fitness for work note. I was at a loss. Although rest is incredibly important, it is not until recently that I learned about so many other interventions that can work to support my recovery too.
I really wish my GP would have given me all of this holistic information in a leaflet after they diagnosed me with long covid! These are summarised below and all support the healthy functioning of the vagus nerve too:
1. Diet and Nutrition
You are what you eat! As I mentioned earlier, the vagus nerve provides a deep connection between the brain and the gut, scientists are now certain that our gut is our ‘second brain’. So what we put inside that gut is evidentially, pretty important. You wouldn’t put orange juice in the fuel cap of your car and be surprised when it doesn’t run very smoothly. The same can be said about us, except maybe some fresh orange juice would be good. I know you’ve heard it all before, but food is fuel and what we put inside our bodies will determine the performance of it, including recovery. Anyway, the foods long covid sufferers should avoid are the same foods we are told to avoid anyway. For example, deep-fried foods, trans fats, convenience foods, high-fat foods, processed foods, alcohol, and sugars. The foods that should be eaten are the classics. Wide variety of vegetables, fruits, seeds, nuts, spices, herbs, legumes, and high-protein foods, such as eggs, fish, and of course, lots and lots of water to keep hydrated. It really is that simple.
2. Vitamins and Supplements
Following on from the above, although we can get most of the necessary vitamins, minerals, amino acids, and nutrients from a healthy diet, there are supplements out there that can support recovery further. Certain supplements can also support the healthy functioning of the vagus nerve, such as omega 3. I would advise that you do your own research into this, but these are the vitamins/supplements I am currently taking: strong probiotics, coenzyme Q10, magnesium, vitamin D, vitamin B, fish oils with omega 3, and curcumin.
3. Moving therapies
If you’ve been in the chronic illness game for a while you have probably heard someone say the well-intentioned phrase “Have you tried yoga?”. And your response on the inside was most likely: “No I have not! AND no I will not!” whilst trying to overcome the crushing fatigue which prevents you from being able to move a muscle fibre. However, I am not talking specifically about twisty, bendy, pretzel-forming yang yoga. Instead, I am talking about yin yoga. This yoga pivots on restoration and calm by focusing on stretching, breath work, meditation, and mindfulness. Which sounds far more enjoyable if you ask me! There are lots of free resources online and of course classes. Another type of moving therapy is walking. Again, that can be extremely hard to do if you are overcome by exhaustion and other debilitating symptoms. However, research has suggested that walking promotes the division of new brain cells, improves circulation, and also contributes to a better mood (especially when you move about in nature!). Even a short walk can reap many benefits.
4. Acupuncture
I am yet to try the traditional Chinese therapy of acupuncture but I have it planned soon. Acupuncture involves the use of inserting thin needles into specific ‘energy flow’ points on the body. This is another one that people dismiss as witchcraft. But believe in it or not, there have been countless cases that have shown it can manage symptoms, alleviate pain, support the immune system, reduce stress, and restore energy. All of which sounds like a fantastic deal when you are suffering from long Covid!
5. Meditation & Mindfulness
I have already discussed these in previous posts, but it is important that they are included here. The whole aim of meditation and mindfulness is to direct your attention to the present, which promotes well-being, improves sleep, and reduces stress. And yes, you guessed it, increases vagal tone! There has been an abundance of evidence collected to suggest the benefits of mediation on long covid recovery, including brain re-training programmes.
6. Deep breathing
Breath work is another important one and kind of coincides with mediation. But I decided to give it its own heading because it deserves it. There are many types of breathing exercises that can support long covid. I really like the box breathing method, but there are others that work too. Breathing this way is known to regulate the nervous system (ding ding ding…vagus nerve!)and reduce stress, whilst also improving lung functioning and increasing oxygen supply.
7. Hyperbaric oxygen therapy
Speaking of oxygen supply, I have started to go to oxygen therapy as I was kindly recommended it by a friend. I have only gone twice and need to book more appointments, but there are long covid sufferers that have experienced life-changing results from it. Oxygen therapy is essentially where you enter a chamber and breathe almost 100% oxygen, compared to the 21% we breathe in naturally from the atmosphere. The goal is to increase the volume of oxygen available to the body which ultimately helps oxygen saturation levels in the blood. It is thought to improve breathing and relieve symptoms individuals face. I have not yet done it long enough to notice the benefits.
8. Cold showers
This is another one that I have only just started and it's not exactly pleasant but I know research shows the benefits are worth the shivers. We all know what physiological effects occur when we are exposed to the cold. The sympathetic nervous system (‘fight or flight’) is responsible for this. When we have regular cold showers or an ice bath, in time, it can lower our sympathetic nervous system and activate our parasympathetic nervous system (increasing our vagal tone, whoop whoop!). It is also thought to activate cholinergic neurons through vagus nerve pathways. Lovely stuff!
9. Massages
The typical benefits of a massage are obvious. Relaxation and reducing stress, etc. But there are many other benefits to getting a massage, such as pain reduction, improved circulation, enhance sleep quality, mood elevation, and an increased body-mind connection. If a full body massage is not for you, then a foot massage is also thought to be beneficial for long covid sufferers. This is a reflexology technique that decreases the sympathetic nervous system response (power to the parasympathetic!).
10. Singing
And finally, you may think I’ve lost the plot by now, but I’ve actually heard this one come up a lot. I won’t go too much into it, but let’s just say there’s been a bunch of research on why singing at the top of your lungs in the car or shower may not always be a bad thing (maybe not for the passenger or housemate though!). Singing is thought to activate the vagus nerve and also strengthen respiratory/vocal muscles, improve lung capacity, and of course, release endorphins.
To finish off I wanted to end by saying that knowledge is power. I don’t know if I am the only one that looks back at ‘yesterday me’ after learning something new today and feels pity for them since they don’t know what I now know. Is that strange? Okay, you don’t need to answer that. Anyway, in my opinion researching, learning, and trialing things can only be a good thing for long covid recovery. When I left my doctor’s surgery without a prescription or a plan, I felt lost, confused, frustrated, and disheartened. I genuinely did not know what to do, except lay on the sofa and rest. Since that time I have gradually accepted that this won't be going away overnight (no matter how much I wish for it to!) but I now know that there are things I can do to speed the process up and get out of the quicksand. In the past few months, I have learned so much about long covid, the chronic illness community, recovery strategies, and most of all, I have learned so much about myself. I really hope those of you that are also suffering out there have been or are able to do the same, one way or another!