Before becoming ill I was a world traveler. First as a language and university student, then as a trainee at international organizations, and lastly as an advisor to parliamentarians participating in international affairs. I absolutely love traveling. Experiencing different places, different cultures. It´s my great joy, my lifeline, my source of energy.

When the ME grounded me in 2016 I had traveled to 35 countries around the world, lived in four and was only just getting started. In the years leading up to my illness I traveled to 10+ countries a year. That was to be replaced by over 7 years of being bedbound and then housebound, with the possibility of traveling as far away as one can imagine. 

I believe what triggered my illness was a virus I was infected by in 2008. Back then it took me less than a year to recover to about 85-90% of my previous health. I could no longer do tough workouts, but anything else I was capable of doing. Working full time, traveling, enjoying life.

Four years later I was offered a new exciting job that entailed a very heavy workload, including lots of travel. Gradually my health started to decline under these unhealthy working conditions, and even though I loved the travel the workload was simply not sustainable. It soon became clear that my employers would not support me in any way, whatever adjustments I requested were declined. In the end I had no choice other than to go on sick leave. This was early 2017.

After 5 months of leave my GP forced me back to work, where my employers started working vehemently on forcing me to resign. I was mild at the time, could have some kind of a life and gradually start working again, in a supportive environment. Not the one I was in. I got offered university teaching and given the hostilities of my employer and my GP´s coercement I felt the teaching job could be the perfect way out.

The safety nets that were supposed to catch me when I became my absolute weakest failed me. Not having the support of either my doctor or my employer I was pressured into not being careful with my health. At the time I didn’t know what that would mean. I did not realize that pushing my limits even further, with a brand new job, right after beginning my recovery process, would make me 20x worse. I went from mild to severe in just a few months. Absolute HORROR. Please be careful not to make the same mistake!

After becoming severe I was mostly bedridden, my ability to do to every day tasks was non existent, and the exhaustion and pain was absolutely horrifying. I could still go to the bathroom myself and feed myself, but that was about it. My life was, in short, an absolute living hell. I ended up having to spend extended periods of time in the 24 h care of my parents.

Symptoms included extreme fatigue, rapid and very strong heart rate, orthostatic intolerance, exhaustion, agony, headaches, nausea, shortness of breath, brainfog, extreme sensitivity to light, sound and odors, problems sleeping, and last but not least horrible PEM. 

During this time I tried numerous treatments/approaches, all of which did either nothing or made me worse. This includes a low carb diet, the GAPS diet and not consuming gluten, dairy, sugar, meat or additives. I found that these diets made no real change to my condition.

I tried a methylation treatment with bioactive B vitamins that made me temporarily much worse, which is to be expected. I stuck it out but in the end it did not make any difference for me.

I tried low dose naltrexone (LDN) which not only made me temporarily worse, as is common, but actually made me worse than I had ever been for months on end after. I also tried the drugs Gabapentin and Abilify, both led to major side effects and made me worse temporarily. 

The biggest thing hindering my progress, however, was probably doing too much too soon. Sounds familiar? At one point on my journey, after a year of hard recovery work when I was finally feeling  somewhat better I went all in on activities, believing I was actually all better and could handle it. That was so not the case and I lost all my progress and then some, not to be retrieved until years later. 

In the summer of 2020 I started to figure out ways to recover and was experienced enough not to take any risky chances with my health. I was no longer mostly bedbound, but “only” mostly housebound. Gradually my ability grew and quality of life improved. Today, I consider myself to be living in the mild state of ME/CFS, on my way towards full recovery, one step at a time.

At home I´m now on my feet most of the day, doing a PhD part time, running a household, attending to my teenage children, going on walks, taking care of my cat, doing strengthening exercises and stretches, taking private language classes via video conferencing, running errands online, talking on the phone, recording audio messages, cooking, having visitors and sleepovers, biking 5-6 km on my indoor bike, relaxing in my jacuzzi or cold tub, planning events, planning future travel, and writing instagram and facebook group posts. 

I leave the house 3-4 times a week to run errands, spend time at my University working on my PhD, meeting friends or going to events in the city (1 h drive). In the last 12 months I´ve participated in more events with friends and family than the 7 years before that combined. This includes birthday parties, confirmation parties, christmas parties, going out to restaurants, sports events, boat rides, and graduations.

Furthermore, I did both a TV and a radio interview on a foreign affairs related matter last year and hope to do more of that now that I´m doing this much better. Finally, I´m not only driving myself again, I´m doing so in winter conditions, both in the city and the countryside, during the day and at night in the dark. Without any problems. Without any nervous system triggering.  

In addition to all this I´ve had three very special big wins in the last nine months. 

Firstly, I went on a helicopter ride over a volcanic eruption together with my family last summer!! A lifelong dream come true. A once in a lifetime experience that filled my heart and soul up for the remainder of the year. 

Secondly, …… I went abroad for the first time in over 7 years last December!! My family and I traveled from our home in Iceland to spend NYE with our best friends who live in Washington DC and Virginia Beach. What an absolute treat!

Thirdly, we went on another adventure this Easter break, to my second homecountry Spain, with a day trip to Tangier in Morocco!! UNREAL. A new country and a new continent on my “countries visited list” – the first one in 8 years. Country no. 36

During both the helicopter ride and these two big dream trips abroad I literally smiled and got tears in my eyes again and again over the sheer joy of actually being there. Experiencing new places. Seeing new things. Enjoying life with our best friends. Spending time as a family doing actual things outside of our house. Strengthening our bond. Expanding our horizons. Living.

At times I wasn´t sure I would ever experience that again.

So to what do I owe this recovery? Not to any magical solutions – we all know they do not exist. I owe this progress to numerous approaches that have worked for me. The pieces to my personal ME puzzle. 

To share my approaches with you in a clear and concise way, I first want to introduce you to the ME/CFS recovery ladder I created last fall, with feedback from my lovely ME/CFS community on Instagram. I created the ladder for inspiration and a clearer view of each level of the recovery process. As clear as it can get, that is. I made it to see where I’ve been, where I’m at, and where I’m going. And give others a chance to do the same. It gives me some clarity in a process so void of one, confirms the progress I’ve made and makes the path forward clearer.

The ladder is a scale of 0-100, with 100 being full recovery. Below is a summary of the ladder, you can view and download the full version here.

I cover all approaches in more detail on my instagram page @betterlifewithmecfs   

• Taking a beta blocker (propranolol)
• Calculating my ME adjusted Anaerobic Threshold (AT)
• Movement within my AT
• Cold Water Therapy

• Establishing a baseline and building gradually up from there
• Better daily routine and structure
• More energy-in activities
• Practising Eckhart Tolle´s teachings
• Daily time in nature
• Daily sunlight

The following approaches have been the most important factors in actually getting me back to living life. They are at the heart of the private brain retraining sessions I’ve been having with a brain retraining coach since September 2023 (ongoing):

• Creating a life I love now, not waiting until I´m better.
• Going with my ideas, see where they lead me.
• Seeking and creating whatever brings me joy, gets me excited, lifts me up.
• Not letting my symptoms bring me down and keep me from experiencing joy.
• Setting more boundaries after figuring out my main remaining nervous system triggers.
• Retraining my brain from negative to positive mindset.
• Focusing on and trusting the best case scenario.

More being, joy, laughs, acceptance, emotional awareness, mindfulness, trust, comfort, love, gratitude, visualizations, letting go, self care, self compassion, self worth, self acceptance. 

Less overthinking, guilt, negative thoughts, mind being stuck in past or future, shame, regret, bitterness, pessimism, lack of self worth, negative energy, negative and/or unsupportive people. 

• How pushing my body endlessly would leave me bedridden for years. 
• How taking risks with your health is never ever worth it.
• That full recovery is very much possible. 
• That it takes time to recover and you have to give yourself that time.  

• Don´t let anybody tell you you can´t recover.
• Never give up.
• Get your nervous system out of fight or flight mode as much as possible, with whichever tools work for you. 
• Find those tools by following content from persons who have recovered.
• Set boundaries.
• Surround yourself with people who full support you and you feel safe around.
• Spend time in nature.
• Create a life you love now, in any way shape or form. 
• Do something that brings you joy everyday.
• You are good enough, just as you are. You don´t need to prove anything to anyone.

These are resources I found particularly helpful on my journey

• Tania Hester´s free bootcamp in Facebook group (followed by private paid brain retraining sessions) Brain Re-Training Solutions for CFS/ME/Long Covid
• CFS Recovery´s free masterclass, content on Instagram and Youtube, and Facebook group CFS Recovery – Community of Thrivers
• Eckhart Tolle´s teachings, in particular his books The Power of Now and New Earth
• Sue Jackson´s website Live with CFS
• CFS Health content on Instagram, Facebook and Youtube

• Toxins & hidden infections – the root cause of Shaun’s ME/CFS
• Why Pilates was crucial to Sophie’s ME/CFS recovery
• 3 things that helped my recovery