Tag: Alexia Chellun

Self-Care When Exploring Long Covid Symptoms

I mentioned in a previous post that I had thought initially that the peripheral neuropathy that I was experiencing was a symptom of Long Covid.  However, as explained in a previous post, I had discovered on investigation with my doctor that there was a structural explanation for these symptoms.  In that post, I encouraged persistent exploration of symptoms with our medical practitioner because our assumptions about symptoms may be misleading.

Self-Care in the face of disinterest or denial

One of the problems in discussing Long Covid with doctors is that there is no general agreement amongst medical practitioners as to what constitutes this condition (or even that the condition exists at all) yet doctors readily accept “fibromyalgia” as a condition.  Fibromyalgia, like Long Covid, involves a set of symptoms  such as muscular pain, cognitive disturbance and fatigue and, in common with Long Covid, symptoms vary with each individual.  In one sense, today’s patient experience with Long Covid diagnosis and treatment is similar to the experience of Lyme Disease sufferers who are faced with ignorance or denial.   This experience is eloquently described in case studies by Allie Cashel in her book, Suffering in Silence: Chronic Lyme Disease in the Age of Denial. 

In her book, Allie also recounts her own experience with Lyme Disease and other chronic conditions.  She strongly encourages patients experiencing any form of chronic illness that is typically denied by the medical profession to persist in sharing our symptoms with our doctor until we achieve a satisfactory outcome in terms of adequate diagnosis and effective treatment options.  Interestingly, she also shares her story and advice in one of the “stories shared for health” on the Healing Story Collaborative platform.  Her storytelling, which includes practical hints on how to approach your doctor with difficult symptoms, is presented in her recorded conversation with Val Walker, Being Fair Reporters: Self-advocating about Chronic Illnesses with Doctors.  Sometimes, self-care may require finding a medical practitioner who really listens and demonstrates that they do the necessary medical research and are across chronic health conditions such as Long Covid.

Reflection – my story to date

Previously, I discussed healing through storytelling as a way forward to recovery from chronic illness or disability.   This is in addition to qualified medical treatment that may take the form of medication and/or physical intervention.  As identified earlier, the problem with chronic illnesses such as Long Covid is that they contribute to a sense of isolation and can lead to depression, anxiety and other mental health issues.  Suzy Bolt’s Programme, Rest, Relax, Recover, addresses the emotional and psychological aspects by providing social support and healing modalities such as mindfulness practices, breathing techniques and group discussion.  In line with the healing power of storytelling, I am continuing my own story of exploration of my chronic symptoms such as peripheral neuropathy.

When searching for a medical practitioner who could help me diagnose my symptoms and suggest appropriate treatment, I came across a local doctor, David Eaton, who has dual qualifications as a General Practitioner and as an Occupational and Environmental Physician.  The breadth of his qualifications was a clue for me in terms of his willingness to explore complex, chronic symptoms and openness to the potential influence of Long Covid.  I have since discovered that he has several special interests that are relevant to my situation:

  • Musculoskeletal medicine, physical impacts of ageing and sports injuries
  • Skin conditions
  • Diagnosing and managing chronic and complex medical conditions.

David initiated a comprehensive investigation of my symptoms including blood tests.  Through David (via X-Ray and CT scan) I acknowledged a structural explanation of my ongoing experience of peripheral neuropathy in the form of spinal degeneration (including spinal stenosis and arthritis).   

The diagnosis of my symptoms is ongoing.  Compounding my current health situation is a group of symptoms that I have assumed are a consequence of Long Covid.  Gez Medinger in his Long Covid Handbook identifies three sets of Long Covid symptoms experienced by people categorised as experiencing mild disease but not hospitalised when suffering Covid initially (my experience as well).   The three sets of Long Covid symptoms that Gez identifies can be categorised loosely as: (1) increased intolerance to foods, (2) cognitive and physical exhaustion (including brain fog), and (3) increased heart rate (palpitations) and associated health issues.  I still experience unexplained symptoms of post-exertion malaise (Category 2) and increased intolerance of certain foods (Category 1 – what was previously experienced as “food sensitivity” is now being experienced as “food allergy” with the attendant aggravation of symptoms (changing from mild to severe).

David was aware that research has supported the observation that Long Covid can increase intolerance to specific foods.  He has also demonstrated that he is continuing to research the emerging literature on Long Covid – a criterion that is very welcome when seeking medical assistance with chronic and complex health conditions in our pandemic era.  David also reinforced the three elements of the health triangle – physical, psychological and social – and their interdependence.

Unfortunately, many patients experience an unwillingness of their doctor to acknowledge the existence of Long Covid or to make the effort to explore the growing research and anecdotal evidence of its existence and pervasive health impacts. 

As I grow in mindfulness through mindfulness practices and reflection, I can continue to challenge my assumptions, gain increased insight into my habitual behaviours, adopt appropriate self-care techniques and move to develop a new personal narrative that reflects my current situation of chronic disability.  In the process, I hope to gain the acceptance that Alexia Chellun describes in her song Allowing:

I’m allowing everything to just be
As it comes to me

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Image by iqbal nuril anwar from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group, and the resources to support the blog.

Assumptions Can Mislead Us About Long Covid

We make assumptions about many aspects of our lives, including about the motivations of others when they do something that has an adverse effect on us – but more often than not our assumptions are wrong.  In this era of Long Covid, it is easy to assume that we suffer from this condition, particularly if we are experiencing multiple symptoms that persist months after a Covid infection.  The Mayo Clinic, for instance, identifies a wide range of symptoms that could be attributed to Long Covid.   They suggest that seeing a medical practitioner in the first instance is important to ensure that we eliminate other possible explanations of our symptoms. They also provide suggestions about what information to record about our symptoms before we visit the medical practitioner.

I have been experiencing peripheral neuropathy (pain in my ankles and numbness in my feet) for some time after an earlier Covid infection. When I listened to Gez Medinger, co-author of the Long Covid Handbook, during the Long Haul & CFS Summit, I began to attribute all my symptoms to Long Covid.  Gez had outlined a range of Long Covid symptoms that aligned with what I was experiencing.  However, having done more research about peripheral neuropathy, especially listening to the video podcast of Dr. Shanna Patterson, a leading neurologist, I was keen to explore my symptoms further.  Shanna explained that there were potentially multiple causes for neuropathy, including structural issues.

Investigating peripheral neuropathy – an on-going symptom

I undertook an X-Ray through a referral by my medical practitioner and discovered that I did have a structural problem in my lumbar spine – degeneration of several discs and potential spinal stenosis.  The structural problems in my spine more likely began at age 12 when I was involved in a serious car accident (before seat belts were available) – our family car rolled multiple times after being hit in the side by another car and then went over a 3 metre embankment, landing on its hood.

From what I have read, tennis (especially the service action) can aggravate spinal injuries.  This was made patently obvious to me in 1997 when a disc in my lower back collapsed, leaving me with severe sciatica for 18 months (finally rectified through multiple natural health modalities such as osteopathy, physiotherapy and hydrotherapy).  I was able to resume playing tennis after these lengthy treatments once I adopted some modifications to my tennis game (especially my serve).

However, now the wear and tear on my spine is so severe that I am unlikely to be able to play tennis again without causing further irreparable damage.  Despite this loss of my favourite sport, I am grateful that I took my doctor’s advice and that of experts like Shanna, and investigated my peripheral neuropathy, rather than just assuming these particular symptoms were caused by nerve damage as a result of Long Covid (even though this could be a contributor).

Reflection

I have not fully comprehended what it means for me to give up playing tennis which has been so much a part of my life for over 60 years.  Tennis has been my escape from the pressures of daily life and a means of developing mindfulness and the associated competencies of paying attention, being in the present moment and visualisation.  Tennis has been a catalyst for savouring my competence and accomplishments. It has also facilitated reflection on my blind spots and managing mistakes.

To manage this current challenge to “letting go” of my self-image as a fit and competent tennis player, I will have to turn to my mindfulness practice.  As Frank Ostaseski reminds us in his book, The Five Invitations, that in the face of loss and grief, we have to let go of the identities that we have become attached to.  He emphasises the preciousness of life and the impermanence of everything.

As I grow in mindfulness through my daily practices, I hope to readily accept the loss of my capacity to play tennis, let go of my related identity, redefine who I am, accept the impermanence of everything and learn to savour the preciousness of life.

Alexia Chellun in her song Surrender also encourages us to “let go” and surrender our fear while opening up to harmony and our higher being.

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Image by Aritha from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group, and the resources to support the blog.

Mindfulness: A Pathway to Long Covid Recovery

Gez Medinger, creator of more than 90 video interview podcasts on Long Covid, strongly recommends visiting your medical practitioner if you have symptoms related to this emerging  illness. He also suggests that any medication should be supplemented by whatever way you find useful to calm your autonomous nervous system.  He argues that there is no recovery from Long Covid without calming the mind and body because the illness is a form of inflammation affecting multiple parts of our human makeup (as reflected in the more than 200 systems identified as being associated with Long Covid).  The illness creates pain because of over-activation of nerves in multiple parts of the body (the body goes into a fight/flight response).  Dr. Deepak Ravindran, pain management expert and Head of a Long Covid Clinic, encourages the use of gentle mind/body practices such as Tai Chi to aid the management of pain and overall recovery. 

After interviewing yoga teacher Suzy Bolt in one of his podcast interviews, Gez strongly advocates her course, Rest, Repair, Recover Programme, as a pathway to recovery from Long Covid.   Suzy’s Programme incorporates yoga, breath techniques, meditation and other mindfulness practices.  She also provides a community of people who are currently experiencing Long Covid or have recovered from it and who readily provide supportive relationships by sharing their own experience of what works for them and offering encouragement and inspiration.  The three different levels within the Programme cater for everyone, irrespective of their physical limitations or mobility issues.

Evidence of the effectiveness of the Rest, Relax, Recover Programme (incorporating mindfulness)

Of particular note, is Suzy’s interview with a course participant Joe Iddison and world famous cardiologist, Dr. Boon Lim.  In the video interview, Joe talks about his recovery journey from Long Covid with the aid of Suzy’s Programme and Boon’s medical advice.  Joe had experienced multiple Long Covid symptoms including PoTS, brain fog, fatigue and insomnia.  Boon recommended Suzy’s Programme because of the many reports he had been receiving from his patients who had recovered from Long Covid with the aid of medication and the Programme.   He indicated that he meditated a number of times each day in his busy cardiac practice.

Suzy herself had recovered from extreme symptoms of Long Covid and her capacity to launch and manage her Programmes with the aid of other professionals, bears witness to the power of her approach.  She stressed the value of her Programme in helping people deal not only with the physical side of the condition but also the mental and emotional side.  Long Covid can negatively impact your role, self-identity, work and home activities (including caring for children) – some people, for example, are so ill that they cannot get out of bed (and you can see them participating in Suzy’s Programme from their bed).  People, too, experience fear and anxiety as a result of the uncertainty and lack of understanding of the illness (from doctors, family, bosses, colleagues and friends).  Mindfulness has been shown to help people manage their anxiety.

While participating in the Programme in real time is desirable for the community connection, the Programme’s effectiveness can also be realised through accessing the resources provided after the activities have been completed live.  Suzy offers an on-demand version of the Programme, at a reduced rate, for people who cannot attend live because of family or work commitments or time differences (the Programme is offered according to the UK time zone).   Joe attests to the effectiveness of the on-demand Programme because that is the version he used for his recovery from extreme Long Covid symptoms.  He indicated in the interview mentioned above that he undertook one activity per day drawing on the Programme’s resources (e.g., yoga, breathing techniques, meditation or listening to the group discussion).

Developing a positive mindset

A key element in the Suzy’s Rest, Relax, Recover Programme is the power to create hope in participants.  This is generated through Suzy’s positivity, the community support and the video testimonials and education provided by participants and medical practitioners.  A key element in recovery from Long Covid is a positive mindset because this determines whether or not you will make the necessary adjustments to your lifestyle to aid recovery.  Debbie Geraghty, for example, shares her recovery story and emphasises the importance of being positive and tapping into something that you love such as dance, creativity, and/or connection.  

Deepak Ravindran, Long Covid and pain management expert mentioned earlier, has written a book, The Pain-Free Mindset: 7 Steps to Taking Control and Overcoming Chronic Pain, which is available in Paperback or as an e-book.  Deepak also mentioned in the interview with Suzy that he has obtained funding to support his patients to be able to do seated Tai Chi.

Reflection

The inability of many doctors to understand the nature and complexity of Long Covid has left their patients confused and uncertain.  Gez Medinger commented during the Long Haul & CFS Summit that the specialization of medicine has contributed to this.  He stated that many medical practitioners are “inadequately equipped” to take on Long Covid because it is a “multi-system, multi-factorial, multi-organ” condition.  Too often, a medical practitioner will focus on a particular symptom that they know how to address but fail to identify the root cause of the overall debilitating condition.  There are clearly exceptions to this, including Dr. Deepak Ravindran and Dr. Boon Lim.

It is important, however, to establish whether other factors (such as nutrient deficiency, undiagnosed cardiac illness or structural problems) are causing and/or contributing to our emerging symptoms.   Leading neurologist, Dr. Shanna Patterson, in a video interview podcast for the Foundation for Peripheral Neuropathy, emphasised that scientists are reluctant to attribute peripheral neuropathy to Long Covid without supportive scientific evidence (because there are many possible causes of this condition). 

However, individuals who are suffering from other identified Long Covid symptoms report experiencing peripheral neuropathy in the form of numbness, pain or tingling in their arms, legs or feet.  Shanna encourages people to explore different forms of diagnosis with their doctor to determine the type of neuropathy involved and to identify appropriate treatment options.  She indicated that blood tests, for example, can highlight whether diabetes, thyroid problems or vitamin deficiency is contributing to the neuropathy.

As I have experienced peripheral neuropathy and a mild form of post-exertion malaise, I have recently approached a medical practitioner who is very experienced and qualified both as a  General Practitioner and an Occupational and Environmental Physician.  I have undergone a series of tests for my current condition under his guidance.  I have simultaneously registered for the on-demand version of Suzy’s Rest, Relax, Recover Programme (the timing of the live sessions does not suit people living in Brisbane, Australia). 

I have a firm belief that as I grow in mindfulness – through breathwork, meditation, Tai Chi and other mindfulness practices – I will be able to calm my autonomous nervous system, develop confidence and hope and facilitate my body’s self-healing properties.  I look forward to engaging with the training provided by Suzy and her professional colleagues and learning from the experience (and success) of others who have suffered from Long Covid.  Suzy reinforces the view that breath is “the bridge between mind and body” and that we can slow both our mind and body by consciously slowing our breath.  Suzy’s YouTube Channel, with free resources such as podcast interviews with leading experts and sample classes, is located here.

Alexia Chellun’s Healing Song is very apt at this point as it incorporates the mantra:

“My body, mind and spirit are healthy”.

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Image by Zhu Bing from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group, and the resources to support the blog.

Paying Attention to the Present Moment

Marvin Belzer recently facilitated a guided meditation podcast on paying attention to the present moment as a way of developing mindfulness.   Marvin stresses the simplicity of meditation, especially for those who are new to meditation practice.  He suggests that the focus for paying attention can be anything that is happening for us at present.  The focus can be our breathing, sounds around us, our bodily sensations or emotions that we are experiencing at the time.

Marvin stresses that meditation does not have to be goal oriented or involve an attempt to achieve perfection.  Being aware and paying attention to some aspect of our here and now experience brings with it a wide range of benefits, e.g., calmness, clarity, peace and positivity.  Diversion from our focus will occur naturally but these distractions can serve to build our awareness muscle , if we consciously return to our focus once we become aware that we have become diverted.

Marvin offers a choice of anchors or meditation focus, consistent with trauma-sensitive mindfulness practice.  He also provides a choice in how we meditate (e.g., sitting, lying down or walking) and whether or not we wish to participate with our eyes closed or open.

My experience of Marvin’s guided meditation

At the outset of the meditation, Marvin encourages us to become grounded through a number of deep breaths, including a heavy sigh on our out-breath.  This process helps to anchor us in the present, release tension and remind us of our intention in pursuing the meditation practice. 

When Marvin offered different foci for the meditation, I chose to focus on an emotion that was present (though somewhat buried).  The emotion was unearthed as I started to do a light body scan focusing on points of pain or tension.  My attention eventually landed on my right foot and ankle where I had been experiencing numbness and pain.  I had come to associate this with post-exertion malaise resulting from the effects of Long Covid.

As I focused on the numbness and pain in my right foot and ankle, I became aware of an associated emotion of disappointment. The net result of the post-exertion malaise is that I am unable to take my walks along the Manly esplanade in Brisbane, practice Tai Chi, or play social tennis (all of which are normally an integral part of my life).  As I focused on the emotion I was experiencing, I became aware of a tear forming and dropping on my face. So, even if I had not previously attended to what I was experiencing as a result of the post-exertion malaise, my body was keeping the score

I realise too that my reluctance to engage in any extended mental exertion (such as writing this blog) or gardening), was a result of recent experiences where limited exertion led to a very quick elevation of heart pulse rate and blood pressure, on one occasion resulting in numbness in both legs and difficulty in moving. Since these experiences, I have undertaken extensive research and participated in (and purchased) the 2023 Overcoming Long Haul and Chronic Fatigue Syndrome Summit.

Reflection

Gez Medinger, who presented at the Overcoming Long Haul Summit, suffered from Long Covid himself and has produced over 90 video interview podcasts with experts in the field.  His very strong recommendation is that people who suffer from Long Covid should “work out what helps them calm the nervous system down”.  He mentioned that acupuncture helped some people, while others have benefited from the Rest, Repair, Recover Programme of yoga teacher Suzy Bolt.   Gez interviewed Suzy Bolt as part of his video podcast interviews on Long Covid.  Lorrie Rivers, Convenor of the  ME/CFS and Long Covid Summit focused on mind/body techniques and mindfulness to aid her own recovery from Long Covid.

The insights I’ve gained to date about recovery from Long Covid encourages me to pursue various mindfulness practices to aid my own recovery.  As I grow in mindfulness, I hope to maintain my calmness and acceptance of my condition, while working creatively towards complete recovery.  Meditation is one practice that can help me use the power of the present moment to “calm my nervous system” and associated symptoms.

I am constantly reminded of Alexia Chellun’s song:

The Power of Now is Here Now

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Image by icecube11 from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group, and the resources to support the blog.