Health Improvement: From Severe To Moderate ME/CFS

As I reach my 11th year anniversary of living with ME/CFS in April, I look back and celebrate all that I have overcome and all that I continue to achieve within the limitations of this condition. I preface this by acknowledging that I don’t think I would have been able to improve as much without the full and excellent support, both literally and financially, of my loved ones. I realise that if I were in the position of isolation and neglect that so many others are facing daily, then I would likely be way worse off.

The Big Difference Between Severe And Moderate ME/CSF, In My Experience

Apart from the obvious, like being more functional and therefore having a better quality of life, when severely affected, every action, emotion and sensory input is draining to some degree which forces you to be locked in at all times. You are hyper aware of your symptoms, your energy levels, how each movement or activity or sound (yours or those in your surroundings) will affect you, in the moment, but also in the weeks, or months, to come.

It keeps you very present, but not in a pleasant way. Calculating your ability and inability every moment of the day is stressful and frustrating. It’s an exhausting full-time job.

Having Moderate ME/CFS now, the past couple of Aprils have gone by without me even thinking too much about the fact that another year of illness had passed.

With improvement comes the freedom of not being hyper aware of the condition in every moment of every day, the way one is when you’re severely affected.

I’m intentionally thinking about my condition for this update since a lot has changed, both in my day to day life and on this website, so I’d like to provide some context and insight into how this has all come about, but I do not really think about ME/CFS much anymore.

Don’t get it wrong, I still have symptoms every day, they’re just way less debilitating than they used to be, so I am able to feel more normal than sick. I can distract myself from the symptoms most of the time and worry less about the triggers, since my nervous system seems to be less sensitive now.

I still have high pain days where everything hurts, today is one of them, or utterly-exhausted-cannot-function days, this happened just the other day, but they are fewer and further between. It is not my everyday normal state anymore.

My Current Focus In Daily Life

I am so grateful for the privelege I have to be able to stay home, to focus on my wellbeing and hobbies, while being taken care of. That my loved ones have believed me and supported me, that they understand my condition and needs well. That they have been willing and able to adjust their lives to accommodate mine, so that I can feel pretty okay, most of the time.

They are amazing humans.

My focus now is living a slow and peaceful life, as stress and drama free as possible, with gentle movement and rest incorporated into each day, because that’s what keeps me from ending up back in bed, in the dark, or in painful spasms.

Why Not Use My Improved Health For Advocacy?

I initially took a social media break in 2021 after realising that advocacy and certain communities online were causing me stress and anxiety. This had a direct impact on my physical wellbeing, as anybody with ME/CFS knows. I was way more at peace and functional in my own life when not spending so much time scrolling infinite social media feeds.

Over the years since then, I’ve occasionally logged back into my accounts and immediately felt the anxiety and stress return, hence my very long hiatus. My health has to be my focus. For myself and also for my loved ones who end up with the extra burden when I am not functional.

Just writing this update has been stressful and emotional for me, so I will try to approach advocacy in a new way, if and when I feel able to do so safely.

My Mindset These Days

What started as a temporary break turned into a new, more enjoyable way of life.

After a decade of being confined to a single room for much of my time, I now focus on the people and activities I love and my daily routines rather than being forced to think about the illness my body is dealing with and how the world continues to misunderstand and misrepresent it.

On occasions when more strenuous activity is necessary, my thoughts are more along the lines of: “Do I feel capable of doing this today?” or maybe “Since I need to do that thing in two days time, would it be wise to do this activity today or do I need to rest rather?”.

Apart from a couple of specific bigger activities every week or two that require some planning and forethought (like a video call, a visit or a shower), my daily life is pretty mildly affected. That is because my routines, and those of my loved ones who are my carers, are built to keep me functioning within my limits, to maintain a comfortable baseline.

And again, without a support system, somebody who is severely affected would not easily or safely maintain this sort of lifestyle in isolation. Support is pivotal for me to remain in this state of Moderate ME/CFS, without it I’d need to do way more daily living necessities on my own (cooking meals, grocery shopping, laundry, earn income, make phonecalls and do all sorts of things that cause me cumulative payback) and I’d not even have the energy to properly do any of it anyway.

To this day, whevener I wander outside of what I know I should stick to, then I still pay for it and can easily slip back into severe status for a day, a week or more. Pain all over, heavy fatigue, brain fog, inability to form sentences, insomnia, shaking, sensitivity to light, all sorts.

Severe ME/CFS hasn’t gone away yet, it is just kept at bay, most of the time.

We all know that a relapse is always a possibility, we have seen it happen to many in our community. But currently, what used to be my everyday normal, is now my flare state, which I avoid by sticking to my routines and staying well within my limits.

It is no longer constantly on my mind, but if I dare try to behave like a healthy person, I am swiftly reminded that I am not one of those, and I end up back in bed and needing more support.

Let’s just say that I learned this lesson the hard way, many times over, and now at year 11 I can finally say that I am way better at staying within my limits. Especially since I have loved ones who remind me to slow down when they see I’m getting too ahead of myself. Ever the optimist!

Backstory: Post-Viral Onset Of ME/CFS

Since all my old content is no longer online, until I can reformat and republish it, I thought I might just share my backstory here in case it may be helpful to anyone, even just for context:

My health decline began around the second half of 2014, it started with shooting pains in various joints throughout my body, lethargy, headaches that came with sensitivity to light, brain fog, forgetting words and trail of thought, memory loss and more.

Then on 1 April 2015 I was on holiday with my family in Italy, we were out cycling, when I lost my voice. That was accompanied by a horrible throat and ear infection, which sent me to bed that very same day and that is where I remained for years.

Not knowing what it was initially, I did try to go out, to return to work, whenever I felt better on a particular day, but within a couple of hours, I would be totally wiped out and in so much pain again.

The pains had gradually became more intense and the fatigue had become so strong that I could not make it more than 2 hours at work before basically falling asleep in my chair.

Diagnosis And First, Most Severe, Years Of Illness

It took about 6 months of many tests and many doctors as well as a couple of therapists to get my diagnosis. And within 8 months I’d lost my job due to my constant absence and inability to function.

I had become housebound and mostly bedridden very quickly thanks to not having a diagnosis, not understanding what was going on with my body, pushing too hard to do normal daily living activities and chores as well as bad advice given to me by doctors who also didn’t understand the condition.

By the end of 2015 I was about 95% bedridden. My sister had already moved in with me to be my full time carer and by 2017, my worst year, our parents had left their lives in Italy to join us and help support the both of us as a result.

The Benefits Of Having Support

Thanks to the help and care of my family, who never once doubted me and took everything on board that needed to be done or changed for my wellbeing, I started to see some slow and steady improvements over time.

Not having to worry about the household maintenance, daily living routines, finances and how I was going to pay the rent or prepare a nourishing meal for myself, really made a difference.

I could focus all my energy on my own recovery and wellness. A privelege that I know not everybody has.

My mum would batch cook meals every week and portion them for the freezer so that they just had to be heated up when needed.

Our parents would come over to visit just once a week and drop off the groceries my Dad had got for us and the premade meals Mum had cooked. They’d take care of the garden and any household maintenance jobs. I’d stay in my room and they’d visit me one at a time.

My sister took care of our home and any personal help I needed throughout the day. Getting me a drink, helping me turn over, get dressed, walk to the bathroom, opening and closing curtains throughout the day, bringing me ice packs or medications and supplements whenever needed. And just holding me whenever I burst into tears for whatever reason.

She learned to read my body language and knew every need, even if I could not communicate it in the moment due to the crushing symptoms. I am so grateful for my family.

The condition fluctuates of course, so the improvement was never clear to me in the moment, but there would be times I would look back and realise I’d made progress and was now able to do a new thing or two in a week.

Things like preparing a small snack or drink for myself, not needing the walker to move around the house, being able to stay upright in bed more, spending some time on the sofa instead of always being in bed, being able to listen to music again.

They might have seemed like small steps forward, but cumulatively, they made a huge impact on my quality of life and independence over time.

Treatment Protocols That Helped Me

Apart from having a super supportive family, reducing stress and practicing aggressive rest, for literal years, I also had various protocols in place to help me manage or reduce symptoms.

In 2015 a friend recommended MSM supplements and they made such a difference that I continue to take it to this day. I was able to come off of many prescription painkillers I had been taking for months.

In 2017, the year where just 7 steps to the toilet felt like a marathon, I started following Dr Myhill’s supplement protocols to support my body in daily functioning as well as switching to her recommended Ketogenic diet. This further reduced my pain, improved the brain fog and lessened the absolutely crushing weakness and fatigue.

In 2017 and again in 2018, we moved homes to be closer to where our parents found work. These were both very difficult years; for my declining health, and as a result, for my family too.

At this point the medical services that I had been referred to for support (CBT and another clinic designed to treat people with persistent physical symptoms) both terminated their services as I was too weak to participate the way they required me to and their initial treatment plans (provided over the phone) were making me worse instead of better.

In 2019 I started taking LDN (Low Dose Naltrexone) which made a huge difference to my quality of life. It reduced the severity and duration of payback, reduced my sensory sensitivities and removed the last of my pain. It also improved my orthostatic intolerance, which allowed me to stay upright more and move around a bit more freely in the house, with walking aids.

I was still housebound, but more reclined than horizontal.

We moved house again at the end of 2022 and, after the initial payback, I stabalised at a new baseline. Our parents eventually moved in with us too, so I got to see my family more and daily routines were more streamlined with everybody in the same house. I stayed in my room 90% of the time, but I was no longer confined to my bed and could move around the small apartment unaided.

Another Debilitating Condition

In 2024 I injured my back severely from sitting on a dining room chair for too long. After years of lying down or having my back fully supported while reclined, I did not have the core strength to sit upright for too long and ended up causing my back to spasm severely.

It has completely immobilised me many times. Excruciating pain like I’ve never felt before.

This injury caused me way more pain and disability than the ME/CFS was causing at this point. It was quite debilitating for almost a year.

Then when I finally thought I had recovered, in 2025, I had a relapse, way more severe than ever before. Needing help toileting and having my longest stretch without a shower. I even ended up in hospital at one point, for a week, because I couldn’t move at all without screaming in pain. Once again, stuck on my back, but this time, I could not even be moved.

My back condition, I’ve been told, is likely going to be a lifelong issue due to my ME/CFS lifestyle. Because I cannot exercise to strengthen my core and back the way that a healthy person could, I am at risk of back spasms. So it is likely to be a recurring issue if I am not careful.

So now I have to manage ME/CFS and this back injury. The one condition requires movement while the other requires rest.

Thankfully, after a few home visits by a very understanding physio, and a few phone calls with a well informed, seemingly ME-literate doctor, I had my new routines in place and a clearer view of what my days needed to look like to keep my back from going into spasms again, while also not causing ME/CFS flares.

That Brings Us To 2026

At the start of 2026 I moved again. I know we move a lot, I have moved many times in my life, it is very normal for our family. You can read more about that here.

I live in a warmer climate now. The new apartment has a lovely balcony where I can grow a container garden and spend some time outside without too much effort. Something I have been looking forward to for years.

I’ll be sharing more about the move and my garden separately, so keep an eye out for those updates. (now linked)

So What Does A Day In My Life Look Like?

On a day to day basis, I go to bed between 10pm and midnight and wake pretty early these days. I tend to get about 6-8 hours of sleep every night and don’t often need a nap in the day.

I’ll have a cup of tea on the balcony in the morning, or on the sofa if my body is slow to wake up and function. And then I get myself ready for the day. Brush teeth and hair and dress.

I tend to check on the garden early, then get settled inside on whatever project I’m working on.

Sitting or lying down whenever I feel the need to, if I’m doing upright activities, but fortunately most of my hobbies are perfectly doable while seated.

I carry a timer around with me from room to room, keeping track of how long I’ve been sitting, or working on any activity, because I have to move every hour. This is to keep my back from spasming. My main health related focus these days. I also need to be reminded to rest, because I tend to get lost in whatever I’m doing until my body forces me to pay attention with some unpleasant symptoms.

Lunch is usually something light, like a salad or sandwich and then for dinner we have a proper cooked meal, keeping it as keto as possible, most of the time.

After dinner, I spend some time on the sofa again, either gaming or watching videos, or writing for the blog. Between 10 and 11pm I usually start dosing off, so that’s when I will go to bed.

Having 101 Interests, I’m Never Bored

I have many hobbies and interests, so I’m never bored. I’m one of those people who is passionately interested in 101 very different topics and I cycle through them. I’m sure that is one of the things that has saved my mental health throughout the almost decade in bed.

Today I might wake up with thoughts about ponds, fish and aquariums and then I’ll be hyper-focused on learning about that for a month and then suddenly one day I’ll randomly remember something from my childhood, like silkworms and then I’m going down that rabbit hole for three days, because it’s garden adjacent and wildlife focused.

Then I remember that I wanted to crochet something and I get hyperfixated on crochet for 2 weeks before I see one of my watercolours on the desk and then the next 4 days are drenched in colours and patterns.

This is my mind. Always curious and fluttering around. Never a bored moment.

I sit on the sofa or at my desk for most activities and then take a walk around the apartment or out onto the balcony whenever the timer dictates. Doing some physio recommended stretches here and there as I go.

Gentle Activities That Keep Me Occupied, Mobile & Functional

How I Preserve Energy And Pace

In order to do all those things I want to do every day, or within a week, I have made some choices and accommodations to help me preserve energy, they have just become my normal now:

Personal Care

I have reduced the number of (seated) showers I take to allow more energy to be allocated to other activities in a week. This new home has a bidet, separate from the toilet, and a raised basin, so I can better take care of myself and stay pretty comfortably clean, even if I cannot shower regularly. I can wash a body part or two whenever I’m in the bathroom and feel capable to do so. The raised basin was an adjustment made to save my back some pain.

Outings

I don’t go out much at all, though I have been out twice this year, using a wheelchair, without severe payback – a huge improvement compared to previous years. It is always a risk to go out, so I avoid it most weeks in order to maintain a level of stabilty at home. My back doesn’t love the wheelchair, unfortuantely.

Sensory Issues

I still wear noise-cancelling headphones on a daily basis, whenever the environment gets noisy around me, but I no longer need them on all day.

I have multiple pairs of glasses. The clear lenses are generally only used on very cloudy days or if I’m working on something not on screen, like crochet, painting, reading a book. The tinted lenses are used on sunny days and for screen time. Then I also have one pair of very dark sunglasses. These allow me to adjust my protection to the lighting I’m exposed to, as needed throughout the day.

Diet & Nutrition

I’m still trying to follow the ketogenic diet, but I’m probably not fully in ketosis all the time. I’m definitely super low carb about 95% of the time while allowing small treats, or a cheat meal, every other week or so. It’s been fun to enjoy some foods I’ve not had in a very long time, while also not triggering the awful symptoms that arise if I enjoy high carb foods for a whole week.

That’s something that usually happens over the Christmas to New Year week, and I often get heavy payback for all the sugar and carbs. Pain all over, shaking, headaches, can’t stay awake, all the usual symptoms. Not fun. So I’m glad that after about 9 years in ketosis, the occasional treat is not as devastating as it used to be. My body seems to bounce back easier, although it absolutely prefers that I stick to Keto.

Medication & Supplements

I’m still taking LDN and all the supplements from Dr Myhill’s protocol. I do feel the difference if I skip these for a couple of days. I also continue to use adrenal cocktails daily. I’d say these are the most important item for me, along with LDN. They are a super fast acting boost and recovery juice, When I start to feel the crash coming on, that feeling like you’re falling, passing out, losing control of your functions, that’s when I rely on the cocktail to lift me back up and give me life again. Love it.

So, What About The Old ME/CFS Content?

I’ve spent the past few years trying to fix everything that got broken on this website, only for it to break again and lose a lot of content. So I don’t really want to keep playing catch up when I could be sharing new and interesting updates instead. I wrote more about this, here.

That said, I will likely be reviving old content over time, which will slowly repopulate the old categories that used to be covered here on the blog. I just won’t make any promises. It will happen whenever it happens. No pressure, no stress.

I hope this post answers any questions you might have had about my absence or what happened to this website and my advocacy work. I also hope that the new direction will be interesting for you and that you’ll stick around, but I understand if this website no longer fits your expectations and you need to say goodbye.

I remain excited and hopeful about the future, as always. And I hope that what I shared here will give a glimmer of hope to somebody out there.