Exploring the Layers Beneath ME/CFS ~ Part FourNovember 7, 2018 11:58 pm
What I decided to do Next, My Treatment Protocols and Where I am at Now…
So much has gone on medically speaking during the last two years, there have been so many ups and downs and ‘the search’ has been complex and very ongoing. I have wanted to share so much with you here on the Blog, but getting any of it down in writing has felt almost impossible. I am so glad that I have finally felt in a place to share some of the things that have happened with you all.
My hope is that after sharing the final instalment of this series, I can then continue to share more in depth posts on some of the specific things I am doing to support my body in moving forward in my healing.
In todays post I’m going to share my current perspective and thoughts as well as touching on some of the treatments and protocols I am using at the moment.
One of the main things I have had confirmed to me time and time again from my numerous findings over the years, is that M.E is an incredibly complex illness. It continues to be so misunderstood medically with no definitive answers as to what causes it or what exactly is going on in the body. It is multi systemic (meaning it affects multiple bodily systems) which confuses matters even more. Alongside the diagnoses of M.E there can often be other conditions that present themselves as has been the case with me, either as a downstream effect of the body not working properly for a long period of time, or as one of the root causes contributing to current symptoms and dysfunction in the body.
The body is an intricate vessel, with one system affecting and having a knock on effect on another. When a certain area of the body is in a state of dysfunction it is going to affect how the rest of the body works too. This is why it saddens me that western medicine so often have one doctor for one area of the body, and one for another.
Ideally the body needs to be treated as a whole for true healing to occur.
It has become clear to me that we are all so very different, and we all have our own underlying stuff going on when it comes to the causation of our illness. For me personally, it is clear that my endocrine and hormonal system are playing a huge part in my current health challenges. As well as the toxic blockages and lack of cellular energy in my mitochondria (energy powerhouses in the cells).
The diagnoses I have been given during the last couple of years in addition to the label of M.E that I had solely been given for the 18 years prior are…
~ Advanced Adrenal Fatigue (with low Cortisol and low Aldosterone)
~ Polycystic Ovarian Syndrome
~ High Prolactin Levels
~ Low Ferritin Levels
~ Mitochondrial Dysfunction
~ Systemic Candida
~ Hemiplegic Migraines with Aura
~ Possible Late Stage Lyme (to be confirmed)
~ Pineal Gland Brain Cyst
The last diagnoses I haven’t mentioned until now, for various reasons really. But to cut a long story short, I was admitted to hospital at the end of last year with total loss of vision in my right eye, excruciating pain in my head, severe vomiting and loss of the use of my right arm. After 8 weeks feeling very unwell, I was diagnosed with Hemiplegic Migraines and referred to a Neurologist. I’ve had three MRI scans on my brain this year and a Cyst has been discovered in the pineal gland area at the centre of my brain (the pineal gland is an endocrine gland). Brain surgery is considered too risky at this stage so the cyst is being monitored, but it was likely the cause of the visual loss / Migraine episode as well as the bouts of severe insomnia I experience intermittently.
I am now seeing this diagnoses as part of the bigger jigsaw rather than worrying about it as an individual thing, or latching on to the idea of ‘is this the one thing that is causing ALL of my symptoms’. Of course I have had my moments of worry with this, when you are told something has been found in your brain it isn’t nice! But I am now in a place where I feel calmer about it.
My aim is to do all I can to holistically heal and rebalance my body. Holding onto the hope and faith that as time goes on, the cyst will eventually shrink and disappear as my body regains homeostasis and heals.
My thoughts on illness and healing has always been that diagnoses are simply labels of an underlying dysfunction in the body. I also have always been of the belief that, if other people can heal, then surely so can I… I just have to find the way.
So, What am I currently doing to help myself heal?
As I mentioned in my last post, it can be incredibly overwhelming when it comes to finding answers and working out the best path forward for you personally. Especially when it seems there are so many different options, no proper guidance or advice from your ‘hospital doctors’ and the huge financial cost that comes along with private testing or treatments.
I’ve had many moments of absolute overwhelm and tears this last year or so, with moments thinking ‘what on earth do I do with all of this? Who do I turn to next? What treatment do I choose?’ It’s been truly terrifying at times. It has also seemed, the more I have looked, the more I have found. Which in one way is good, but in other ways can add to the overwhelm.
It’s so easy to get sucked down a rabbit hole of thinking one thing is causing all of your symptoms and then frantically searching for a cure / solution to heal this latest discovery, when so often, its the body as a whole that needs gentle nurturing and healing so it can come back to balance.
I eventually decided, to start as simply as possible. To incorporate all of the things I already knew and pull on the resources I already had…
I have had a few consultations during this past year with a Nutritionist at the Optimum Health Clinic (a place I trust after working with them during my first years with M.E over ten years ago). My Nutritionist got me onto a basic nutritional supplementation plan and checked my diet is optimal for my constitution. The aim of this being to help my body get the foundational support it so desperately needs whilst taking into mind that when energy is lacking in the body, absorption often isn’t what it should be.
I have decided not to share specific supplements in this post as we are all so very different and our needs differ. It’s important to find what is right for us individually by having a consultation with a qualified nutritionist or practitioner.
Alongside my supplements I follow a diet that is healthy and wholesome. I cut gluten out of my diet when I found out that it can negatively affect the Thyroid function. I eat organic foods where possible to avoid additional toxins into my body. I aim to have a green juice daily to flood my body with vitamins and minerals that it can easily absorb. I also have plenty of fresh vegetables and nutritionally dense foods with each meal. I take digestive enzymes to support my body in absorbing as much as it can from my food.
As those of you who have read the first three parts of this series will know, many of my imbalances come from my endocrine and hormonal system. Excess weight can exasperate hormonal imbalances in the body as fat cells can raise oestrogen and increase PCOS symptoms too. I am gently working on losing some weight, and making sure to eat foods that stabilise and support my blood sugar levels too. I am also about to embark on a protocol to begin clearing the candida (yeast overgrowth) that is an issue for me currently.
Although I like to mainly approach my healing in a way that is as natural as possible, I also appreciate that western medicine has its place.
The first thing I began was Iron supplementation due to my ferritin levels being so low. I took the tablets prescribed by my GP until my levels were up to a reasonable number, and then switched to a gentler type of Iron by a brand called Solgar.
I started taking Levothyroxine just over two years ago and I am so glad that I did. I desperately needed it, and although I have still got a long way to go, so many of my thyroid related symptoms are much improved now. Although something like Thyroxine will never treat underlying causes of illness, I believe when the body gets to such a depleted point such as mine had, supporting it with a crutch such as this can take pressure off other bodily systems and help the body begin to regain energy needed for healing.
It hasn’t been an easy journey getting onto Thyroxine. Its taken two years to get onto the right dosage and I have had to go incredibly slowly. I’ve had major reactions along the way, such as breathing difficulties and severe insomnia, when increasing dosages due to my adrenals being so sensitive. But by going slowly and tuning into what my body has needed, I’ve finally got onto a level that I think is okay for me.
I shall write another post dedicated purely to thyroid stuff as there is so much to say on this. It’s a complex area and there are many things we can do to support our thyroid alongside taking thyroid hormone replacement.
I am so lucky to have an experienced and trusted Medical Herbalist not far from where I live. I first came across Herbal Medicine back in 2014 and I was going through a huge amount emotionally. Working with Andrew (my herbalist) helped so much during that time, in ways I never could have anticipated. The power of herbal medicine is truly amazing. I took some time off from my herbal medicine when I was in the thick of the new diagnoses happening and getting onto my thyroxine. But, once I had finished the majority of consultations/scans/investigations earlier this year, I decided to go back to Andrew to begin the next phase of my treatment.
We are working gently, due to my system being so sensitive and having severe reactions if we add in too much at once. But slowly but surely I feel we are getting somewhere.
I take Vitex Agnus Castus for my Hormonal Imbalances (after just one month of taking this my periods that were irregular fell into a regular 29 day cycle). I also take a tailor made tincture every day, that we are adjusting as time is going on. I shall write a blog post purely on Herbal Medicine in time, as there is a lot to say on Herbal Medicine generally and also my personal experience so far.
Getting into a Healing State
After the endless stress of searching for underlying causes, I soon realised that this search could go on forever more. Some people are lucky in that they fall onto one thing that is the root cause of their illness, they treat it, and things get better. But for many of us, things aren’t as clear cut as that. It has been so important to investigate all that I have this during the last couple of years, after all there have been things that have desperately needed addressing and treating, such as my hypothyroidism.
But there comes a point where we need to make sure we are supporting our body in its healing too, and not creating even more stress by frantically searching for answers.
The work of Dr Kim D’eramo has helped me a lot this past few months. She teaches the importance of fully embracing where you are currently at. So many of us fiercely resist our circumstances, especially if we are physically unwell or amidst deep suffering. We can become almost obsessed with finding answers or the one thing that is going to fix us. But this can so often end up adding another layer of stress to our body and perpetuate things.
Finding a balance between gently researching treatments where necessary, and surrendering to where we are at with a level of peace, is so important.
The body has an innate wisdom and healing power within it. My current take is that I am supporting my body in various ways physically now, but it is so important not try and do too much at once or flit from one practitioner to the next. I am trusting in the treatment I am receiving and other than that, focusing on doing all I can to help my body get into its own healing state.
The Little Things (that are actually big things)
This includes doing the things I know help me, such as gentle yoga and daily meditation. Using essential oils. Getting out in daylight and nature whenever possible, even if this just means sitting in my garden for a few minutes. Listening to my body, properly (this is one I have to continuously work at and doesn’t come easy to me at all). Treating myself with love and compassion. Finding joy in the little things each day.
Resting… and by this I mean allowing true rest, even on the days when we can ‘just about do something’ rather than pushing through because it gives some sort of external sense of control or gratification. Acknowledging that when we truly rest, we give our body a chance to heal.
I also know how important it is to make sure our mind is in the right place. This doesn’t mean pretending to be positive all the time… but it does mean acknowledging that what we are thinking or focusing on can have a great effect on our lives and our body’s too. Being aware of your self talk and where your mind is at. Realising you have a choice on what you focus on.
Embracing your feelings fully is also important, especially when you think that emotions are basically ‘energy in motion’. E-motion. Pushing feelings down, or telling yourself you should feel one thing and not another, can cause energy blocks in the body and other problems too. When you need to cry or express frustration, do so. Let the feelings come, and have compassion for yourself when you are in those darker moments.
Your Own Inner Guidance System
It has taken time, so much time (18 years infact!) to get to where I am today. I have written these blog posts over the last couple of years, a bit at a time, and as these words reach you now, they are neatly on the page. But don’t underestimate what its taken to get to this point. There have been endless moments of ‘what do I do next?’ Along with tears and overwhelm. It’s been messy. Up and down. I’ve had to actively seek out medical support, not knowing if the next thing was going to help or be a complete waste of precious energy and money I haven’t got. It’s taken patience, trust and a few leaps of faith too.
Unfortunately, when working towards healing a chronic illness such as ME/CFS it can be complex. So if you find yourself in this place too? Please know that it’s normal… you are not alone. But with gentle steps forward, you will find the path that is right for you.
All you can do is work with where you are at, right now. By quietening your mind and worries enough to gently listen, your intuition and inner guidance will often tell you what is the right ‘next step’.
Thank you lovely reader!
Thank you so much for reading if you have gotten this far. It’s been a series of posts I have been working on for such a long time now, and at times if I’m completely honest, I debated whether to scrap the idea all together as it just seemed like there was so much information to share and I had no idea where to start or how to get it all down on paper. But I got there in the end, which i guess is a great metaphor in itself isn’t it?
Hopefully these posts will help some of you on your own healing path, whether they trigger a gentle nudge to go and have some bloods taken at the doctors to double check all is as it should be, or a knowing that you are absolutely not alone if you feel overwhelmed. More than anything, from this I hope that you realise that there is no right or wrong way to do this. We are all individual and all we can do in any one moment, is our best with where we are currently at.
Trusting your OWN intuition is so important. Keep going. One step at a time.
If you would like to read more about my own personal story and experiences over the last 18 years with ME/CFS, including how I believed I had fully recovered in my mid 20’s, you can find posts here and here.
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