My Recovery Story

I'm Anna, I was diagnosed with autoimmune disease in 2020. On my journey of recovery, I read so many stories from people who had managed to prevent decline, reduce medication, or recover partially or completely. I looked for patterns in the factors that contributed to their illness and their recovery, and copied what they did to get better. Now that I too have recovered, I feel compelled to share my story, not because it's anything special, but precisely because it is like so many of the others that I read.

Introduction

At first it felt like it started in 2019 when I was 6 months pregnant and started to go blind in one eye. Many doctors visits and more deterioration of my vision led to an incorrect diagnosis of NAION at the time. After giving birth and nursing my newborn, I had continued to lose vision and went back for another round of scans, tests and procedures including a spinal tap and contrast MRI that led to my diagnosis of Neuromyelitis optica (NMO). By this time I had lost all of the central vision in my left eye and the neurologist told me that I could be blind and wheelchair-bound within five years. She told me my only hope to save my other eye and the use of my legs was to take immunosuppressant medication called Rituximab that was very effective in preventing further flares and deterioration. There was no mention of improvement or recovery. This was July 2020 and I had to get myself onto state healthcare for the medication because my private insurance wouldn't cover it. We were in the midst of the pandemic, my husband had lost his job and we had our baby to care for. It was a very stressful time. I collected my paperwork to get access to state healthcare but I also knew I needed to take my health into my own hands to have any chance of living the life I wanted to live.

Of course it didn't really start there at all. It started way back. Because once I really thought about it, I actually hadn't been healthy before the vision loss that eventually led me to my diagnosis.

Teens (2001-2008)

I had a typical 'easy' life as a kid. Stable family, nice home, we moved house quite a bit but I didn't mind making new friends. I thought of myself as happy and outgoing. It was only looking back through new eyes after my diagnosis that I really noticed that my teens were plagued by headaches, stomach aches, diarrhea, sugar cravings, body odour, recurring thrush, menstrual pain and irregular periods. I used to take painkillers and anti-inflammatories regularly to make it through the day. I suffered with depression, anxiety and insomnia. I used to self-harm. My body was stiff and inflexible and I used to get neck pain and jaw pain and grind my teeth. I took the contraceptive pill from age 16 to 30, ignorant of how it worked or what side-effects it had. And I had a few rounds of unnecessary antibiotics along the way too.

20s (2008-2018)

By the time I was 20 I had anemia. And then I switched to a plant-based diet with big ideas about saving the world and promptly added IBS to my list of symptoms, which I suffered with for a decade after my doctor told me not to go back to her about it because she couldn't help me with it.

All this time, I thought of myself as healthy, happy, energetic and lucky, in spite of the evidence to the contrary. I couldn't reconcile my symptoms with the idea I had of myself and it didn't seem that either my doctor or the university therapist could help me, so I just carried on.

In my mid 20s I was working, going out drinking and doing sports daily and I completely burned myself out. At this time, I was disillusioned with work and life in general and filling my time with more and more stuff to try and escape the emptiness of life. I started getting pins and needles in my entire body at night and at some point I got so exhausted that I had to spend a whole weekend in bed. I lost my libido and my energy in the summer of 2012 and now I consider that the onset of my autoimmune disease, 8 years before diagnosis. It never occurred to me to go to the doctor with those symptoms at the time - I guess I just thought I was running myself into the ground and needed to rest.

Two years later I had my first bout of disturbed vision. Another stressful time (planning my wedding, then planning to leave the country with my new husband to live abroad) provoked a small blind patch in my left eye. I didn't realise it was a blind spot at the time, I just thought I was so tired that my eye had gone fuzzy. I knew I was exhausted, so I just closed the shutters and spent the weekend on the sofa. It went away. Looking back, it seems crazy that it never even occurred to me to go to the doctor! And in a way amazing that I just gave my body what it needed to allow my vision to recover.

I tried to carry on carrying on, but those years between losing my energy and getting diagnosed passed me by with little to show for them. I wasn't doing paid work. We were living abroad, finding a house to buy, restoring it, and trying to settle into our new place in the world. I was fatigued, weak, grumpy and miserable, trying to put on a brave face. I had bouts of sciatica, headaches, eye pain, poor circulation, I was an emotional wreck, suffered with continual mouth ulcers and stomach aches. My relationship with food and my body was a disaster - I would eat to try and feel more energetic, or to soothe my stomach aches, but I was just adding fuel to the fire. I had some awareness around this but it felt like food was my only comfort and I was addicted to it, particularly sugary foods. I would over-eat and feel terrible and repeat this cycle daily, feeling lost and powerless as to how to escape it. My insomnia went from bad to worse and I felt like I was day-dreaming through life.

When I started getting pains in my vulva, I did got to the doctor and was sent away with antibiotics for a non-existent UTI because I had leukocytes in my urine. When the antibiotics didn't work, they gave me stronger ones. I binned the second round of antibiotics and stopped going back because I knew I didn't have a UTI. What I didn't know is that I had nerve pain from an undiagnosed autoimmune disease and I was so inflamed that I was peeing out white blood cells. At a loss, I just added it to the long list of symptoms that I lived with.

30s (2019 onwards)

By this time I was 31 and decided to come off the pill with the idea of starting a family. Looking back, I can't tell you why I thought this was a good course of action at the time, I think it was just my expectation of my life course - school, university, work, marriage, children. Anyway, then I was pregnant, adding a huge stress to my already struggling body. During my pregnancy, routine blood work led to a diagnosis of hyperthyroidism, which explained some symptoms I had since adolescence - always too hot, hungry, heart palpitations and anxiety. And I found out (from the internet, not my doctor) that it was an autoimmune condition.

Throughout my entire pregnancy I only gained 2kg. I was exhausted and inflamed and couldn't hold much food down, surviving off a few crackers with cream cheese. When I was 6 months pregnant, I was managing some major building works that were being done on our house. The stress was getting to me and I was barely sleeping, doing manual work and this is when my blind spot returned in my left eye, the same as before. Having resolved it with rest the previous time, this time I thought "I'll rest after this project" and carried on. And the blind spot persisted. I didn't realise it was a blind spot, it just seemed like a fuzzy patch, so I went to an optician, who sent me to an opthalmologist, who sent me to a neurologist, who sent me away with one diagnosis then did a whole load more tests before telling me I had NMO. The whole process took a year. A stressful year of hospital visits, uncertainty, new parenthood and a pandemic.

By the time I got my diagnosis of NMO, I had done a bit of terrified web searching about MS and NMO based on the notes written at the bottom of pieces of paper the neurologist gave me to take to other departments for scans and tests. I read about the unstoppable decline, the medications, always living in fear of the next flare. I was so exhausted and so sad and afraid, I just couldn't imagine getting worse, never mind not ever getting any better. When the evidence was conclusive, I was sat in the doctor's office, listening to her diagnose me with NMO, which she said was "Like MS but more aggressive and lacking periods of remission". She talked about the chronic nature of the disease, about wheelchairs and blindness, and taking medication for life. And in my head I just thought "No. That can not be my fate." And I knew that I would try anything that had a chance of changing that outcome.

Thankfully I had come across a story of autoimmune recovery way before I ever got diagnosed and I remembered it. I read it again then went looking for others. I found the Autoimmune Protocol (AIP). And there was a beacon of hope that I wasn't doomed to the fate that my doctor had assigned to me. At the time, I didn't dare hope that I could ever actually recover. My first mission was to prevent further decline.

I started the AIP diet straight away, before I ever got on my immunosuppressants. I mentioned the protocol to my doctor, and she informed me that changing my diet would have no impact on my disease. But my IBS disappeared overnight and the blood work I got just before starting the drugs showed that my thyroid was normal already, a fortnight in. I was buoyed by this small success and knew that I would be able to improve my situation more than my doctor believed was possible.

However, after 6 months of AIP, I was still unable to reintroduce any foods without symptoms returning, so I enlisted the help of a nutritional therapist. She helped me reverse many of my symptoms and I felt like I was going from strength to strength. I tried to give up carbs on her recommendation, but I cut them out from one day to the next and ended up floored by keto flu without knowing what it was. I gave up on that, too exhausted and under-informed to make it through. This is such a shame because in hindsight, I had given up my highly inflammatory diet (of huge quantities of pasta, legumes, nightshades, home baking and fun-size chocolate bars), and replaced it will a less inflammatory but still high sugar diet of sweet potatoes, cassava flour baking, fried plantain and fruit smoothies. It was a step in the right direction at least...

I also got psychotherapy at this time, which was a huge help in getting to work on issues I had been carrying around my whole life. I had wanted therapy for years but I was afraid that if I started digging into my feelings that the darkness would grow bigger and bigger and engulf me completely. Of course what I actually found was that shining a light onto my problems, although painful, made them much easier to manage. It felt like the process I went through with my therapist was like digging out all of the muck from a barn. It had been completely full to the brim, spilling out of the windows and the barn was completely unusable. Now that the muck was cleared out, whenever a new cow splat hit the deck, it didn't take much effort to shovel it out.

Then I had a major setback when (still immunosuppressed) I caught covid, followed immediately by a 10-day food poisoning. I suffered with symptoms of long covid for 9 months, and my husband got appendicitis. Looking back on this time, I see a blur of stress, anger, exhaustion, arguments, and two strung-out parents doing their best to muddle through life with chronic illness. I re-visited my nutritional therapist and a found a medical herbalist to help me get back on track. I found it frustrating thinking that I was doing well only to go through periods of intense set-backs. But I was doing a little better all the time.

Two years after starting my medication, I decided to stop taking it. Rituximab infusions are once a year and to be honest I wasn't completely convinced that I was ready to remove the safety blanket that it gave me. But I definitely didn't want to do another year of it. So at my routine appointment, my neurologist went to book me in for the next round and I said actually no thanks, I wasn't going to do that. He told me why that wasn't recommendable, that I was enjoying a period of remission because I didn't currently have many B-cells circulating, but that if I stopped the medication and they came back, I would relapse. I felt afraid and unsure but put on a confident, determined look and said I was going to try it anyway. He gracefully suggested seeing me sooner than usual to review. I agreed and we set a date for 6 months hence.

As my B-cells came back, I felt more energetic and was sick less often. I kept seeing my neurologist every 6 months, eventually switching to telephone appointments to avoid the hassle of going to the hospital.

Once off my medication, I decided I was ready to have another baby. In retrospect, I had no idea how far I still had to go with my healing. Having been ill for so long, I kept thinking I was 'better' just because I was so much better than I had been! But better is all relative and I was doing much better.

My second pregnancy was less stressful and I allowed myself to rest a lot. I was still on a restricted diet but I had such strong cravings for eggs and dairy that I decided to reintroduce them during pregnancy, against my nutritional therapist's advice. Eggs and goat's yogurt went well and I felt good until I started on cured goat's cheese and my headaches came back with a vengeance. I didn't know at the time that I was sensitive to tyramine in aged cheese. So in my ignorance I thought the headaches meant I was having an autoimmune flare and 6 months into my pregnancy I fell into a spiral of stress.

I kept going through these stressful periods related to my fear of decline and my fear around reintroducing foods. The stressful times would set me back, occasionally I would feel energetic and think 'I'm healed!' only to rebound into exhaustion again. I was trying to 'live well with autoimmunity' or 'manage autoimmune symptoms'. I was no longer on the track towards inevitable decline, but I was also not better. I thought I was stuck there until I met a naturopath who showed me the way to push through that last barrier on my way to healing myself.

He recommended that I try a 'healthy keto' diet without nightshades or cow dairy, and that I would benefit from fasting. At the time, I had only just reintroduced grains and I was absolutely against giving up carbs, and especially against giving up food all together for a few days! But for years I had known that blood sugar disregulation was a major problem for me and that I would have to face my food addiction and sugar cravings. So in I went. I reduced carbs over a few weeks, going through keto flu and cravings, but this time I was emotionally prepared, armed with the knowledge of how it was going to be and determined to make it through.

As I went into ketosis, my brain fog started to lift. I could think again for the first time in a decade! And exercise! I started strength training and researching. When I could bring myself to try fasting, I compounded these benefits. I started small, skipping just one dinner at first! Eventually I worked up to doing 3-day fasts. I stopped having to nap in the daytime and started sleeping better at night.

Then I started meditating. For years I had incorporated guided meditations or yoga nidra naps into my healing and benefited from the extra rest. But when it came to just sitting down with no voice in the headphones to guide me, I was a mess. I would sit down then pop right back up again because I had 'things to do', because it was boring or because it was uncomfortable. I realised at some point that my body perceived the absence of 'doing' to be threatening. I had to learn to sit with my discomfort. Sticking with meditation has been led to more calm in my life than I thought I was capable of. I started waking up every morning at 7am with good energy that remains stable throughout the day.

I realised on my meditation journey that I would get into a stressed state by basically any activity - even just doing the washing up or getting the kids ready for school. I would get a bit jittery, worry about the time, start rushing everyone along and then wonder why the kids were in a bad mood. Then after the stress was over, I felt exhausted. This cycle of activity and stress then burnout and collapse had been a pattern throughout my life, culminating in my autoimmune disease. It was like I had to create drama in order to have something to work on or fix. I had never just walked the middle road of doing things calmly. So I got to work on calming my nervous system. Bringing calm into my everyday life, avoiding the peaks and troughs, keeping a steady routine and coming face to face with the “monotony” of life that used to terrify me.

Looking back, it's easy to see that I was always looking for more - to be more outgoing, more fun, more interesting, more intelligent, more giving, more adventurous, more helpful, more athletic, more beautiful, more, more, more. I couldn't accept that I was alright just as I was. I went from extreme to extreme, hungry for the 'something' that was going to make me feel complete.

I used to think that I was broken - irreparably broken - and I had to pretend to be someone else in order to function, in order to be liked. I think in a way my autoimmune disease was an embodied expression of my lack of acceptance of myself. I was literally killing myself. On my recovery journey, I slowly slowly unwound the web of underlying conditions that led to my illness.

Where I'm at now

I am walking the middle road, watching more and more aspects of my life align with the definition of 'Health'. That definition of health had felt like a far-off fantasy. And now I get up at 7am feeling energetic and I have steady energy all day. I am able to tolerate any and all foods! I currently eat a whole-foods ancestral diet, and focus on making food a source of nourishment, peaceful joy and calm.

I am still blind in my left eye, but I no longer have the hallmark symptoms of autoimmune disease (fatigue, pain, brain fog). My list of 76 symptoms that I mapped with my herbalist has been reduced to one or two. It's been years since I've seen my neurologist and I am confident in managing my day-to-day health myself. I feel safe and at home in my body. I'm steadily walking Recovery Road, calm and confident in myself and the methods that I am employing along the way.