A focus on Chronic Fatigue Syndrome, ME, Lyme disease and whatever other names you want to use for Chronic illness.
Today is #MEAwarenessDay. Today I planned to write a short piece to highlight ME and other chronic diseases…and that’s where this begins. However, as I began writing, it felt right to tell you more about how this has impacted our lives. I’m not a huge sharer. I don’t like to draw attention to what’s happened to us, however it’s where my writing has taken me today. I hope that by telling some of our story and sharing my Nutritional Therapy knowledge, it will give you a better understanding of chronic disease. Conventional medicine may be woefully unprepared and unwilling to help you….but know that you are not alone….
If you are one of the #millionsmissing know that I see you…know that I hear you and know that you are not alone.
Given the current situation with #COVID19, I’m hoping that this year’s awareness day will gain greater interest than normal. For some of you, the last few weeks of government imposed #lockdown, may have given you an insight into what it’s like to live permanently in isolation, when you suffer from a chronic long-term debilitating, disabling illness. This group of patients, abandoned by conventional medicine, have become known as the #millionsmissing….because living in a permanently sick body…. they have become missing from everyday life.
They are missing from the simplest of things like, walking downstairs, leaving their bedrooms, mealtimes, conversations, feeling the sun on their faces, trips to the supermarket, walks in the park, visits to friends and relations.
They are missing from the bigger things too…. Birthdays, Weddings, travelling the world, holidays… parties of all types, trips to pubs, clubs, bars, team sports, running, cycling, swimming.
They are missing from the building a future, the workplace, from studying, from school, from university, from gaining qualifications.
They are missing from relationships, boyfriends, girlfriends, life changing decisions like moving out of the family home, buying a house, getting married, having children.
They are missing from dreams, aspirations, hopes, careers. They are literally invisible… missing from life!
Today is a day when maybe those of us in #lockdown, those who are relatively new to this phenomenon, could reflect on the outstanding strength and resilience that this group of patients’ have to demonstrate daily. Ask yourself this……Would you cope if this was your daily reality?. Would you cope if you could see no end in sight? Would you cope if overtime, you were unsupported by doctors, friends, family and partners? Would you cope with the isolation, fear, loss of hope, pain, depression, drifting away of friends?
Something I’ve noticed, which is by no means unique to us, is the phenomenon which I call, “Illness fatigue”.
What is “Illness Fatigue”?
If someone has a heart attack, develops type 2 diabetes, or has a car crash, there are clear stages to what happens next. It mostly goes like this. You’re suddenly very unwell, you then get diagnosed, you get treated, everyone rallies around. In most instances you will recover. Now please don’t get me wrong, I am not trying to diminish their suffering, or how devastating any kind of illness can be and I know that sometimes people don’t make a full recovery. They could even die…but generally speaking this disease has a beginning, a middle and an end.
Chronic illness does not follow this pattern. It begins, everyone rallies round, you hope there’s a middle…..but then it goes on and on and on….where is the end? What are people supposed to do now? Do friends continue to check up on you regularly? Do they ask you how you’re feeling? Do they pop round to see why you haven’t been in contact?
Unfortunately, in many cases the answer to all these questions is NO! And this is “Illness Fatigue”.
Maybe it’s out of embarrassment…maybe they just don’t know what to do or say anymore? Maybe being friends with the new version of you is just not that much fun anymore? People lead busy lives, friendships fade…. I get that…but that doesn’t make it easy. Incidentally, this is not a “woe is me” observation. I’m not writing this looking for sympathy or pity…I’m just explaining a common phenomenon that occurs in chronic disease.
What hope is there for the #millionsmissing?
Well to be frank, for some all hope is lost. In Chronic Lyme Disease for example, one of the biggest causes of death, apart from the illness itself, is suicide. However, I have observed that out of this bleakness and isolation, there is still so much hope and positivity, strength and determination, to find a way to live a fulfilling life, despite all the difficulties faced.
In Business….it blows me away to see what some people with chronic disease still manage to achieve. I know of one young lady who has a highly successful designer bag brand, another who has trained as a yoga teacher and offers online yoga for her chronically ill friends, another developing her own online house design consultancy.
In Research, Education and Advocacy…. there are some amazing “chronically sick” minds battling every day to push the science forward, raise awareness, campaigning, putting on conferences to educate patients and doctors. You know who you are and I salute and thank you for the work that you do, for the publications that make it to press, and for your amazing minds!
In Holistic health care, Naturopathy, Nutritional Therapy, Health Coaching…. many practitioners through their own experience with chronic illness train to help others. Through running a local support group, myself, I have become great friends with another #millionsmissing She is training to be a Functional Medicine health coach. Good luck fellow #lymie. I know you will be brilliant!
And now a heres “My Story” (which as I said above is not where I planned to go…)
I too am one of these people, who is coming through this with something positive, with a skill to share. I have become an advocate for #millionsmissing and in my practice, I focus on people, specifically women, with chronic health conditions. I do this because in a nut shell, I see you! I hear you! I understand what you’ve been through and what you’re still going through! And knowing that…I want to use my personal experience and my professional knowledge to hopefully support you.
Let’s start from the beginning.
I began my Masters in Nutritional Therapy training at The University of Worcester in 2012 as a “well person”. Whilst undertaking my studies, my daughter became unwell and a couple of years later I too became unwell, some of which was brought on by stress and grief having suddenly lost my father at the same time. My daughter was in her 2nd year of University and had recurring sore throats, low grade fever, IBS, heart palpitations, dizziness and to use her words, she was “tired like never before”. I kid you not when I tell you that at our first trip to the GP, the first question he asked her was whether she was sexually active and had she had a recent chlamydia test. The funny thing is, in asking about a potential infection, he was actually barking up the right tree. You’ll see later….
6 months later, no further forward, with anti-depressants the only treatment offered, she was diagnosed by private NHS consultants with Chronic Fatigue Syndrome and Fibromyalgia. Through my knowledge and understanding of these “diseases”, I knew that these “diseases” are terms to describe a collection of overlapping symptoms, when all other explanations have been ruled out. Furthermore, her diagnosis of Fibromyalgia was atypical as this diagnosis is based on assessing specific areas of pain, many of which she didn’t actually have.
Hurrah for the Functional Medicine Model.
At this time, in my course I was being trained to apply a Functional Medicine (FM) approach to disease. This approach looks at each person as an individual. It enables the practitioner to determine potential underlying root causes of ill health. It assesses Antecedents, what went on before, Triggers, what happened at the time, and Mediators, what could be perpetuating the ongoing illness. We refer to these as the ATM’s. I like to think of this process like peeling an onion, removing one layer at a time to unearth more potential layers. And like peeling onions…. expect a few tears on the way!
Sometimes onset of illness can be sudden, even overnight, particularly after a stressful lifestyle event like a death or divorce, or after physical trauma or injury. Other times it can be slow subtle changes overtime, changes that happen so slowly you barely notice it happening until one day you wake up a changed person. Other times it can be a combination of all of this.
What are the possible Antecedents, Mediators and Triggers (ATM’S) in chronic disease.? (NB. Sometimes examples of ATM’s can fall into more than one category)
Perhaps one of the biggest issues that sometimes is overlooked are Stressful life events. Chronic stress affects all areas of the body: Sleep, digestion, DNA expression, cell repair and the immune system, can all be negatively impacted. In addition, the following antecedents can contribute to changes in health. Poor nutrient status, childhood injuries or illness, medication history, pre-existing health conditions. Individual epigenetic differences.
Some examples are exposure to a toxin such as black mould, a viral infection such as glandular fever, an undetected tick bite, a physical injury, especially if this involves the head or neck, food allergy.
These involve but are not limited to, individual nutrient status, sub-optimal hormone levels, poor diet, food intolerances, high levels of ongoing stress, poor digestion.
Back to my daughter
For her the ATM’s were a complicated combination, which has taken a number of years to fathom out. Some of the antecedents were an undiagnosed autoimmune thyroid condition, missed by a paediatrician who failed to point out the significance of high levels of autoimmune thyroid antibodies, gluten intolerance, poor nutrient status…. she was always a fussy eater and when she became unwell she was a student burning the candle at both ends! She was also living in MOULDY student accommodation.
The trigger was a bite from an infected tick, some 18 months before, which transmitted Lyme disease and a host of other chronic infections. Borrelia burgdorferi, which is the scientific name for the infection carried by ticks, is a highly sophisticated bacteria, skilled at evading the immune system. Incidentally, I know lots of Lyme patients who were initially diagnosed with CFS or ME, who after treating the infection and the damage they caused, have seen great improvements in their health. It also knows how to hijack other parts of the immune system leading to reactivation of viral infections. Interestingly a recent research paper by a leading ME research Naviaux has found reactivated Viruses in ME patients. Is this the full story? Or is lyme disease involved too? Further research is desperately needed here and in many other areas of potential disease mediators?
Lyme infection, by altering immune function, also exposes you to opportunistic infections, like chlamydia pneumonia (CPN). This is where my GP was right….it was an infection…. but not a sexually transmitted one! Were you aware that CPN, which can cause chronic lung infections, has even been linked to onset of Multiple sclerosis.
A couple of her Mediators which could also be viewed as antecedents are her Mast Cell Activation Syndrome (MCAS) only diagnosed officially 18 months ago, 5 years after becoming unwell and a connective tissue disorder (hEDS) only diagnosed 8 months ago. These have contributed or maybe caused or possibly exacerbated (it’s a bit like the chicken and egg when you try to assess the part these guys play) to instability which contributed to her autonomic dysfunction and POTS.
As you can see, my daughter was a huge complex onion, that’s taken time and tears to peel!
The use of “Food as Medicine”
Throughout this time, 7 years now, we have utilised many dietary protocols, I appreciate the challenges of cooking for a family, whilst incorporating gluten free, dairy free, low histamine, low fodmaps, paleo,.to name but a few. I understand how difficult psychologically it is to make dietary changes when you’re exhausted, scared, anxious and fed up with another practitioner trying to tell you they have the magic pill, the perfect solution, the only effective Nutritional protocol, all the answers. If I hear another practitioner tell me this…. I am now more likely to run in the opposite direct. And I would probably advise you to do the same!
No-one has all the answers, everyone must continue to learn. I’ll never stop learning and researching as my daughters’ journey and many of my clients have a beginning, even maybe a middle but many have a long way to still go before they’ve reached their end.
And as to getting to the “end”, we have to acknowledge there are no guarantees and that the “end” may not be all that you had wished for.
Privilege and practicing gratitude.
For me, I acknowledge how lucky I am compared to many of you who might be lying alone in your bedroom. I have financial resources, clinical and professional knowledge and training and support of my close family. My daughter is also very lucky and is forever grateful for having someone to advocate for her when she was too ill to even read. Together we have been able to pool our resources, to support one another, challenge the thinking of conventional medicine and their flawed studies and dangerous treatment options like GET and CBT. Together we have developed amazing coping strategies. We have learned to be grateful for the small things in life, for the small victories that we achieve. From support groups, and I’ve been on many, I have witnessed so many amazing stories of resilience, support and made lifelong friendships. And finally, having practiced what I preach…. I’m so very grateful that I can see the light at what hopefully will be my “end” …. I can’t wait to get there.
My daughters journey is personal.
As to my daughter, her return to wellness has is really her story to tell. However, I will share a couple of things. Whilst I have been right by her side throughout it all, she has also done a lot of her own research, and as a patient, I would advise you to do this if you can. No-one knows your body as well as you do. If something does not feel right, it’s because it probably isn’t. Equally if something resonates with you, then follow that feeling. Whatever treatment you choose to follow, you have to be invested in it and believe it can help. We have also consulted other practitioners. There were a couple of reasons for this. Firstly, at times in my own illness, I just didn’t have the energy to give it my full attention, and secondly as her mother it can at times be just too emotional and that can impair one’s judgement and thought processes. Additionally, we have used modalities like acupuncture and homeopathy, which are not in my area of expertise.
Healing is not linear.
There have been many ups and downs, it’s still ongoing, she’s made amazing progress in the last few months. She’s rarely in pain and is walking her dog every day, and slowly regaining strength.
Her commitment to her healing, following her protocols, taking her meds and supplements, ensuring she sticks to her diet is unfathomable. And it is because of the strength and resilience she shows every day I know she will continue to improve.
One last important point- Change can happen.
If you have a chronic illness it does not have to be a life sentence. If you have an autoimmune condition, chronic lyme disease, MCAS, hEDS, fibromyalgia, Lupus, Anxiety, Depression, CFS, ME…. please know that there are steps you can take that can lead to changes in your health. A great place to start would be to heading over to Dr Sarah Myhills website, or looking for a practitioner who, like me, uses a Functional Medicine approach.
Below I will include some links to some of the people I have mentioned in this article.
Please comment on anything I’ve said. Please share your experiences. I’d love to hear from you, to know if any of this has resonated with you.
You can find me on FaceBook. Katherine Brookhouse Nutritionhttps://www.facebook.com/Katherine-Brookhouse-Nutrition-1089531357896203/
Or on Instagram https://www.instagram.com/katherinebnutri
Businesses Run by “Lymies” #millionsmissing
Find Jo Doyle on Instagram @Chronic_tonic_wellbeing
Educational resources (Run by some amazing Lyme and ME advocates I’ve come to know)