Basic Stuff

• Name: Ani W
• Country: Australia
• State: Tasmania
• City: Hobart
• Gender: Female
• Age: 45
• Education: Four Year Degree
• Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
• Diagnosis:
  • Chronic Fatigue Syndrome (ME/CFS)
  • Migraine
• Year Illness Began: 2018

Functioning Interrupted

Most Impactful Loss

Years of being unable to live my life. Loss of connections to my interests, friends, family, self-image, own brain functioning, cultural activities, outdoor spaces. It was a traumatic experience.

My Story

I don't think my answers to some of the questions will quite make sense or fit the format since I have fully recovered. I’m also actually in New Zealand.

I had chronic fatigue for the first time in adolescence after Epstein Barr Virus (EBV) (aka glandular fever or mononucleosis). I recovered after a few months. My life after that had a number of ups and downs, which I’ll explain later, but for the most part I was physically well and able.

In my mid-30s I developed some health issues – weight gain from medication, sleep apnea, some postural issues, recurring infectious illness via my young children, including a bad bout of hand, foot and mouth disease (probably Coxsackie virus) and 6 months of recurring strep throat. The big issue I had then was chronic severe migraines which would rob me of many days each month. I was still active and energetic though and didn’t experience fatigue, but I wasn’t in great health. I was already unable to work during this time but I was able to be an active and involved parent and do some hobbies.

At the end of 2018 I contracted an unknown virus that developed into a kidney infection. This happened while I was on a family holiday and I made the regrettable decision to just push through and carry on with activities, despite being unwell, with the belief I could rest and recover when we were home again. It wasn’t a good holiday, there was some family conflict that caused stress and it was very hot and I had a lot of heat stress.

When I returned home again I waited to recover and after about two months I realised I wasn’t going to. I saw my doctor and described all my ongoing symptoms – this included the migraines and tiredness I’d had before the kidney infection, but also the post-infection deep fatigue, dizziness, brain fog and fully body muscle aches. I was referred to an internal medicine specialist and they said I would be tested for a number of things, but if it wasn’t those things it was likely I had ME/CFS in which case my only option was going to be finding my own alternative treatments.

What followed I’ll shorten as it will be familiar – lots of normal test results and being congratulated on them. This included multiple urine and blood tests and a brain MRI. Lots of waitlists and unclear communication and no answers were provided and no guidance given for what to do about my symptoms. I had some very poor medical treatment – the usual suggestions of gradual exercise and yoga and some inappropriate medication management so I ended up on a combination that was producing interaction side effects. I also have a tendency to have sensitive reactions to medications and rare side effects anyway. I was overprescribed diclofenac and developed gastritis as a result. I switched doctors twice to get all of that resolved and ended up withdrawing all medication. I’m not antimedication but those particular things were not helping me. (It included things like venlafaxine, propranolol, rizatriptan, omeprazole).

One useful thing offered by doctors was that I had my sleep apnea diagnosed and treated with CPAP. It did not resolve my symptoms, but it did reduce some daytime sleepiness and some headaches. It wasn’t particularly noticeable given the other symptoms.

For all of 2019 and into 2020 I was very debilitated. I was housebound and on the migraine days (they were many) I was confined to being in bed in the dark. I had constant pain. I couldn’t do most tasks or manage many trips outside the home. I would have to rest part way through getting dressed which I didn’t bother with most days and just stayed in pyjamas. I could only bathe weekly. To lift my arm to brush my teeth I would experience pain, weakness and shaking. I was very limited in my ability to parent or be involved in my children’s lives. I was unable to be a present and supportive spouse. I had significant brain fog so couldn’t read books or watch movies as I couldn’t concentrate for that long. I had some POTs-like symptoms and if I had a day of slightly more exertion I would have a much faster heartbeat the next day and deeper fatigue (postexertional malaise). I also had gastrointestinal symptoms and unrefreshing sleep.

With no support or advice from doctors I decided to see if I could find some answers and hope on my own. This website is one of the online spaces I referred to, as well as other chronic illness groups and organisations and I reviewed research literature. I look back now and wonder how I did that when I was so foggy. My working background included science research so I had an advantage in reviewing information and wading through the unfortunate large amount of misinformation. I felt fairly strongly what I was experiencing was mitochondrial dysfunction and a lack of functional aerobic energy production. To me that explained fatigue, weakness, and sore, shaking muscles from minor exertions (anaerobic lactic acid production). I reviewed suggested supplements for supporting mitochondrial function and (funded by family) put together a series of supplements I started taking. Also, with the assumption my metabolism was experiencing a lot of inflammation and oxidative stress, I greatly increased my intake of fruits, vegetables, herbs and spices so I could flood my system with natural antioxidants and anti-inflammatories. Particularly I drank a lot of rosemary tea as it is one of the strongest natural anti-inflammatories.

In 2020 I also developed functional neurological symptoms. I’m very aware that this is a difficult topic for the chronic illness community and understandably so given how poorly this phenomenon is represented and discussed, including by far too many medical professionals. I had episodes of losing the ability to speak and walk and had one-sided numbness and paralysis that appeared stroke-like. Ongoing symptoms were blurred, darkened and tunnelled vision and pulsatile tinnitus. The one-sided paralysis was very involuntary as it impacted things I couldn’t consciously control like bowel movements. It limited my life even further, particularly the vision symptoms as I couldn’t safely drive the 10 minute drives I had been managing before. I had a second MRI and another review by a neurologist and a positive diagnosis of functional neurological disorder (FND). I was referred to a treatment team. I was extremely sceptical of both the diagnosis and their ability to help but I was so desperate I was willing to entertain any offer of support.

I was quite lucky that I happen to live in a city that has an excellent FND treatment team and the treatment was completely effective and resolved symptoms with no relapse – the one-sided physical symptoms, the speech and walking issues, and the vision and tinnitus all resolved. That team were very clear that FND is an involuntary neurological phenomenon, is not just “in the head”, they don’t see it as mental health related at all, and they did not claim that my ME/CFS fatigue and post-exertional malaise were as a result of neurological causes, nor did they aim to treat it. Their focus was the additional symptoms.

About the same time as I was receiving that treatment I read about the cases of those who had recovered after discovering and receiving treatment for craniocervical instability. It prompted me to look at my own neck and realise it wasn’t unstable, but it was very misaligned and very tense. I had a spinal x-ray and was diagnosed with scoliosis. I started to see a knowledgeable physiotherapist who started working to realign my neck. Within a few months I stopped having migraines and I’ve never had one since. That was after seven years of chronic severe and debilitating migraines that no doctor had investigated. When I described the areas of pain that physiotherapist guessed straight away it was from my neck. (Behind and through the eyes like a hot metal spike, sharp pains on the top of the head). I also think that some of the tinnitus may have been from very tense sternocleidomastoid muscles.

Also at this time I started paying attention to my breathing pattern. It was shallow, fast and I was breathing with my shoulder muscles and only into the upper part of my lungs. I started to breath more deeply and intentionally and into the belly. I did it at the time as I’d read it was one form of exercise that could actually be done when living with debilitating fatigue, but I’ve realised since that breathing patterns can have quite big physiological impacts.

So, during this time with taking supplements, altering diet, having neck treatment, changing my breathing pattern and having functional symptoms addressed something happened and my fatigue faded away. I say faded away, but it was actually quite sudden. It was at the end of 2020, almost two years after contracting the virus which had triggered ME/CFS. I had a good day, then another, then another and I started to test my limits and realise I had energy. It was like a switch had flicked. I was actually terrified because I thought hope was being dangled in front of me and could be taken away. Little by little I started to trust it and engage more in life. It is a mystery how and why I recovered. It could be luck, it could be one or a combination of the healing approaches I was weaving together. I will never know for sure and I certainly don’t claim to have all the answers. But I’m willing to share my experience in case there is use in it.

I have spoken with quite a few medical professionals and researchers since as they’re curious about my case. We think the supplements were very important, as was my diet. We also wonder if my neck issues were causing neuroinflammation and interfering with cranial nerves and my autonomous nervous system. I had been primed for the illness in many ways too. I no longer have scoliosis at all. I think it may have been fatigue and then the deconditioning that meant my body didn’t have energy to support my spinal column, while now it does.

I would like to share a bit about post-recovery because I realised I lot of things in that time too that might be relevant to others. I think it also validates a lot about our shared experiences and the impacts of these illnesses.

As I recovered I was really focused on how to make sure I stayed recovered as I was quite desperate to not go back into illness again. I really thought about what my life needs to be for me to be well and realised how atypical it would look. I’m sensitive to light and noise and always have been, I like a lot of alone time, etc. About that time I stumbled upon some information about late-diagnosed autistic women and realised those stories mirrored my life and I was autistic too. I went on to be diagnosed professionally. I know that ME/CFS is much more common among neurodivergent people and I can imagine it might have something to do with our brains, minds and bodies experiencing so much lifelong stress. In my case I realised I had cPTSD, had had additional “big T” PTSD in my life, a lot of times with anxiety and depression and many times of going into autistic burnout. Being autistic also relates to my medication sensitivity, possibly some atypical micronutrient needs, habits that can lead to poor posture, having doctors greatly underestimate my pain and distress, and so many things that align to what I’d been through. I don’t have EDS though, but it’s something to consider for anyone similar to me. I will say I’m very happy to know I’m autistic and there’s been a lot of healing in that and learning to live life in a way that’s comfortable and sustainable for my needs and who I am.

There are a few things which are clear from my case – my ME/CFS symptoms were NOT as a result of deconditioning. When I recovered I was the most deconditioned I’ve been in my life and even though that created limits it was not the debilitating lack of energy I had been living with. My ME/CFS symptoms were also not anything to do with weight or mental illness. They were also NOT imaginary – and the reason I say that is it was only after I recovered I realised that some part of me had not ever given up gaslighting and doubting my experiences throughout my illness. I know that it was entirely internalised from the horrendous amount of invalidation and doubt we experience from the world.

So one of the first feelings I had after getting past the fear of relapse was an incredible anger. I was rageful because I had both the clarity and energy to see just how unwell I had been, the reality of it and how much I had had to support myself while those with responsibility had done close to NOTHING. I was furious. One of the medical leaders in my country received an impassioned complaint from me about how much our system lets down those with ME/CFS.

As the rage subsided I spent a lot of time processing grief and going through self-forgiveness. Both for what I’d gone through with my illness, but also for a life not knowing I was autistic and all the ways I’d unknowingly undermined my own wellbeing. It was a process to forgive myself and find lots of compassion for supporting myself from then on. I’ve also had a lot of trauma therapy in the years since, I needed it and it has helped. I still experience some survivor’s guilt. It’s probably why it’s taken me years to share my story here. And I wanted to really believe my recovery was going to last (I don’t 100% but I do enough).

After two years of ME/CFS and also the five years prior of chronic migraines I was very deconditioned. I started to go for walks again but it caused a lot of pain. I had to back off from that and instead work with physiotherapists to rebuild strength and muscle balance and slowly reengage with activity. I also had support from an osteopath, masseuse, acupuncturists, etc. This was over three years and fortunately most was funded. I also had some work to do further correcting breathing patterns and better managing my asthma. After three years we made the call I was back to being able to walk again without pain and at a good baseline – I was rehabilitated. That was not easy as it was a lot of progress then regression and frustration. But I committed to persistent gentle effort and it paid off and there were small victories along the way.

I have been able to reconnect to life – my family, friends, interests, study, work, culturally as an indigenous person. It’s become clear to me how much all those connections foster wellbeing and it is heartbreaking to think about my years without it and how many people are still in disconnection. Some parts of my life haven’t been rebuilt yet though and I sometimes fight back shame about that, it’s a long road back.

My work now is in advocacy and support roles. I only work part-time and it’s my intention to never work full-time again. My energy and time are so precious to me and I intend to use them well. I’ve done some advocacy for both people with ME/CFS and Long Covid, contributed to all sorts of research and most of my work is supporting autistic people in their wellbeing.

I will never assume it can’t happen to me again because I know I’m vulnerable. But I did get through a Covid infection with no lasting health impacts. It was terrifying though.

I’ve learned since that the two year mark of illness can be a point of no return and I was very, very lucky to recover when I did. I had been preparing to accept it as my life forever but I found I couldn’t do that until I’d pushed my hardest and tried everything to recover and a fire rose up through me that drove everything I did to try and shift the illness. I know the statistics and how rare a complete recovery is. I do think though, if I didn’t know I was autistic and was still trying to live to the standards and expectations of our neurotypical-dominant world, that I probably would have significant fatigue and in that case might interpret myself as partially recovered. But instead I see myself as a well and thriving autistic person. I have had lifelong needs that weren’t met most of my life, now they are I am quite energetic.

I have realised that doctors do not believe my pain as I don’t show it in typical ways in my face or voice and I don’t register it myself until it breaches a 7/10 threshold. So I have learned to self-advocate by communicating pain through it’s impacts on my life, emotional health and amount of pain relief I use. I have also learned to communicate with doctors by asking many questions – it is deferential enough to manage any ego but allows me to put things on the table and make sure I know what the decision process is and what will happen next. And they’re obliged to answer. I will only now work with medical professionals who will partner with me and respect my expertise about my experience, if they try and be a patronising expert and expect me to be a passive recipient I ditch them and move on. I’ve also put a lot of support around myself so if I’m too overwhelmed to self-advocate then someone will do it on my behalf. My sense of safety in medical settings has improved a lot.

I would like to acknowledge some things about myself – I do have multiple marginalised identities that intersect and I do experience some negative impacts from that. But in my advantage I have education, safe family, supportive social circles, enough financial resource to not have our housing threatened, a reasonably safe city I live in, access to publicly funded medical care and I can see the ways those things have been necessary to me.

I’ve tried to include as much detail as I can to be helpful. I do hope there is help in it. I hope there haven't been triggers for anyone, but I know that can be a minefield we walk when we have been through so much. To all those still unwell I’d like to send you strength and love and say I believe you. I believe everything you say you’re experiencing is exactly what is happening to you, I know you haven’t chosen this and that nobody would, I know you are likely being let down so, so much and it can feel so hopeless, I know you have a strength that most people will never know. I also know that not everyone will recover, and some may only have partial recoveries. I hope you know that your value is innate and unquestionable – it exists because of who you are, your existence and commitment to get through each day is enough for you to be valuable in this world.