The days are getting longer and Orion is high in the sky when we go for our evening walk. The weather has been very spring-like – plenty of rain, wind and sun with a few morning frosts. The primroses and dog violets are flowering, the wild plums are in blossom, and leaves are emerging on elder and wild rose. Our salads are full of fresh spring growth – juicy chickweed, tender green onions, spicy rocket and colourful borage flowers. I have been collecting fresh young dandelion leaves to make a stimulating bitter tea to ease the transition from rich winter food to the fresh crunch of spring. Our strawberry plants have started to put out their first fruit.
We felt inspired one weekend and bought five local tree varieties – two apples, a plum, a cherry and a walnut. We managed to get them planted by the end of the month, although it was touch and go! And the two windows we had ordered got delivered and we carried them up the hill with the help of some neighbours one Saturday morning.
But that was all we got done on the house and land this month. Dave has been working a lot and we have struggled to keep on top of daily necessities, never mind make any kind of progress. All of my energy and resources that are leftover after keeping Leona and the house in order are being directed to my wellbeing.
I have shared the beginnings of my healing journey below. It is a long one! If you’re not interested I suggest you stop here with some family pictures until next time.
Learn & Heal
A gradual decline
It has been a transformative month for me on my quest for better health. I started the month with so much anxiety – my symptoms seemed to be getting worse but there was still over a month to go until my next immunosuppressive infusion. I thought it couldn’t come soon enough. I was fatigued, jittery, nervous and tetchy. The pins and needles in my arms and hands were getting worse and even started in my face. My ‘good eye’ was playing up again. My fatigue and muscle weakness were bothering me more and I had daily headaches, eye pain and sore throat. I could feel myself declining but didn’t want to admit it to myself or anyone else.
I have already made big changes to my diet and lifestyle since August with important benefits, but I was feeling at the mercy of fate again, that I was in a downward spiral with no hope for a healthy future. I decided to dive back into some research and call in some support. I hired a nutritional therapist who healed her own autoimmune condition after being bedridden for a year. And together we have started the work of getting me better.
Mindset is everything
One of the most important transformations in my thinking has been my attitude towards my body. I was stuck on the idea that my body had failed me. It is attacking itself! Only a bad, malfunctioning body would attack itself. But all my reading has led me to realise that my body is not working against me, it’s the other way around. My body is trying its best to heal – that’s what bodies do best. It has spent a lifetime sending me distress calls but I wasn’t listening. “I’m tired.” Said my body. “Sleep when you’re dead!” Said I. The distress calls got louder and louder over the years – fatigue, pins and needles, digestive issues, problems with my vision. I was literally going blind in one eye and I still thought it was probably no big deal. What was I thinking?? Now I realise that I have to start to help myself.
My official diagnosis is that the functions I have lost are lost forever – there is no possibility of improvement. All we can hope to do is stop or slow further decline by obliterating part of my immune system. Immunosuppresants for the rest of my life. They leave me vulnerable to infection. And although the drugs I’m on have been proven to be pretty effective at preventing further decline, they haven’t improved my fatigue much and I still get brain fog. Immunosuppressants are not a cure. They do not make me healthy. Modern medicine says that I can not be cured.
I don’t accept the diagnosis I have been given. I refuse to spend the rest of my life unwell and in decline. Why? Because it’s a bollucks diagnosis. Autoimmune diseases, much like heart disease and many cancers, are diseases of the ‘civilised’ world. Autoimmune diseases were unknown, probably non-existent, a few hundred years ago and certainly a few thousand years ago. Our ancestors didn’t have allergies, asthma, autism or multiple sclerosis. So it stands to reason that the modern lifestyle is the major contributing factor in the development of these conditions. And it follows that they can be prevented, controlled or maybe even reversed by changing our lifestyle. We just need to know which aspects of it need to be changed and work on those. Luckily there is a huge body of scientific evidence to draw on.
Back in August I started following the Autoimmune Protocol (AIP) diet and saw some benefits after just a few weeks. I stabilised my overactive thyroid so I no longer have symptoms of Grave’s disease (uncontrolled weight loss, overheating, palpitations). I corrected my nutrient deficiencies – vitamin B12, iron and vitamin D. And I no longer have IBS – the stomach-aches that I suffered daily for a decade are gone. Those are major wins! And a testament to the science behind AIP.
Still I felt like there was more to be gained if I knew what else to do. This is where my nutritional therapist comes in. She spent a long time getting to know my history and condition then made a list of recommendations which I have been working to incorporate into my routine. I changed some key aspects of my diet, reducing starchy vegetables, adding more raw vegetables and adding a few supplements. I notice my blood sugar is better regulated and I feel less anxious and jittery. I spent a few weeks feeling terrible with starch cravings and detox symptoms but now I’m getting some energy back and no longer need to nap in the afternoons. My muscle weakness has improved and I can do my daily walks without my legs feeling like jelly. The pins and needles have gone away and I rarely have a headache, eye pain or sore throat.
At the request of my nutritional therapist I read a book called The Wahls’ Protocol: How I Beat Progressive MS With Paleo Principles and Functional Medicine. It is written by Dr Terry Wahls who got out of her tilt-recline wheelchair and back onto her bike by eating a nutrient-dense diet and practicing particular therapies. She is an inspiration! The research and science behind her recommendations is interesting and she continues to run studies and publish the results from her clinic.
I have noticed that working to change my emotional coping style has benefited me hugely. I read a book called When The Body Says No: The Cost of Hidden Stress by Dr Gabor Mate. It was fascinating, illuminating and painful to read about the mechanisms by which repressed emotions cause harm to our bodies. By the end of the book I had a better understanding of what my emotional issues are and how to manage them. The author especially promotes “the power of negative thinking”, meaning that when feelings of anger or sadness arise, you should feel them fully and express them calmly. So that’s something I have been working on. It is liberating to identify and express feelings as they arise, rather than squashing or trying to ignore them like I have tended to do in the past.
I know that my eyesight responds dramatically and immediately to stress. When I am tired or worried, my ‘good eye’ plays up and I can see floating chains of bubbles and have trouble focusing. The last month or so I have been experiencing gradually worsening vision but tried to ignore it, suppressing my anxiety about it. I never want to tell Dave when I’m unwell because I know he worries about me. The day that I finally blurted out to him that I wasn’t coping and I was so afraid, I felt so relieved that it has barely bothered me since.
Of course the power of positive thinking is equally important. When you are relaxed, content or peaceful, your body takes the time to repair itself. My nutritional therapist prescribed daily healing meditation. This is the kind of thing I would have scoffed at in the past but I have embraced it fully and I have had some powerfully beautiful experiences in meditation this month. Now that I am not festering with negative feelings, I am able to experience deep peace and connectedness for the first time in my life.
I am reading Medicine Woman by Lucy Pearce, which is giving me important context and making me feel less alone in my struggle. The book is thought-provoking and requires a lot of self-reflection and consideration. I am making my way through it slowly and with due care.
I have reached out to some friends this month, sharing my struggles and joys more freely than before. I have started telling my parents how I am really feeling – this is surprisingly difficult! But then very nice to experience. And I’m loving inhabiting this body and mind that I have been battling with for so long.
Cold water therapy
A friend told me he was using The Wim Hof Method to control his autoimmune condition. This involves cold water therapy and breathing techniques. I started reading the book and that same day I did my first cold shower – just 15 seconds of cold at the end of my usual warm shower. Actually I probably only managed 10 seconds the first time, I think I was counting quite fast! The second day was a little easier, the third easier still. I have also been practicing his breathing exercises and found that I could peacefully hold my breath for a minute and a half at the end of the first go. I feel I have more energy and I’m already hooked.
Detoxing is one of those things that I didn’t believe in. Science says it’s not real, it’s just something that hippies talk about. But that’s absurd. Of course our bodies have mechanisms for removing toxins – we have to eliminate our own waste products all the time, as well as those that come from our environment. Of course toxins can build up in our bodies – bioaccumulation is a known phenomenon. We are subjected to far more toxins than our ancestors, including many known carcinogens. There are lots of ways we can support our bodies in keeping healthy, from avoiding contact with harmful materials to supporting healthy liver function, to bathing in epsom salts or clay. I have been taking supplements to support my liver and I have been taking clay foot baths.
It seems obvious but I definitely needed to hear it from Dr Wahls to realise it – if you are not active now and you don’t change anything, you’re not going to suddenly become active. If you want to be more active, you have to work at it. I was already taking Leona and Charlie out for short walks every day, but now I walk with more purpose instead of tiredly ambling. In the mornings Leona loves riding on my back in the sling as we walk through the woods. In the afternoons she’s keen to get out and walk herself so I spend some time barefoot, sinking my feet into the clay puddles in our field like a chilly outdoor spa whilst she potters around collecting sticks and splashing about.
It isn’t easy trying to fit all of this healing magic into our lives, especially since Dave is back at work. He is wonderfully supportive and often spends all day alternating between working at his desk and looking after Leona, forgoing any time to himself in order to give me the time that I need to rest and heal. Thankfully Leona still naps in the day as well because that time is precious to me.
On the 1st March I am going for my second immunosuppressive infusion. A month ago I was desperate for it. Now I don’t really want to have it. I feel that I am starting to see the benefits of natural healing and the thought of killing off part of my immune system is painful to me. But I do think it’s the right thing to do – at least for now. It will buy me six precious months in which to continue to look after myself without the threat of deterioration. After that, I can meet with my doctor to discuss what the future holds. It’s a long road and not to be hurried. I’m excited and optimistic for the next chapter.