A day in my life feat. brain training

How I'm currently balancing my days to restore my health

I have always been fascinated by what a typical day looks like for the average person. The focus has always shifted, but the interest in how people structure their days has remained. One thing that my time being ill has brought me is clarity around why this has been the case. 

It is clear to me now that my obsession with other people’s days was driven by a need to know if I was doing ‘enough’ and doing things ‘right’.  Don’t get me wrong, I think it can be helpful to gain perspective around what someone can realistically fit into a day. The more typical days you read about, the more data you have, and so you can build a more accurate picture. But, it is important to recognise that the data we’re getting is generally not well-rounded. Our society preferences the perspectives of upper-call, white, male, neurotypicals. So the people we can spend a long time comparing ourselves to might be fundamentally different people to us. In my case, it did more harm than good to compare myself to productivity gurus who work out two hours a day, run their timetables with militant precision and biohacks every facet of their life, because I hadn’t yet understood that the energy cycles of my own body were very different. Trying to live a life like theirs was likely a contributing factor to my decline in health.

I have accepted now that I am just never going to be this person. It has been helpful for me over the last couple of years to intentionally deep-dive into the lives and perspectives of the neurodivergent, women, POC and the disabled, because it has rebalanced the narrative. I now know there are many different ways to organise our time so that it best suits our own needs and that we need to experiment with what works best for us. 

Why am I telling you all this? In response to my last newsletter about my new approach to recovery, some of you were interested in knowing what a typical day looks like for me now. I think sharing our perspectives on recovery is important, especially when it comes to illnesses that are not yet well understood or researched by the medical community. Even more so for illnesses like ME/CFS, MCAS and Mould Illness, where it can feel like there is no hope of things ever improving.

However, I want people to read this and not get sucked into the comparison game, like I have many many times in the past (and no doubt will continue to do from time-to-time)

My way is not the right way. I am still stumbling around in the dark most of the time and things change almost daily. If you are in a place where you tend to compare yourself to others and freak out that you aren’t doing recovery right (no judgement, I’ve been there, and know I will likely be there again), then this might not be the right time for you to read this. 

Also, before reading, I think it is really important to recognise first if you are reading from a place of genuine curiosity, or because you are trying to reassure yourself that you are doing things ‘right’. I like to have a sense of control over my life and I really struggle with uncertainty. This is the case for almost everyone who suffers from any sort of anxiety-related disorder, and is turbo-charged with conditions like obsessive compulsive disorder (OCD), of which I have recently been diagnosed with (which I now understand as just another branch of limbic system impairment). My brain likes to tell me that the more people I can compare myself to, the more likely I am to be getting it ‘right’. The problem with this type of thinking is that there is no ‘right’ way, and trying to find one is only reinforcing the loop that my brain gets stuck in. The scary truth is that there is no way we are ever going to know if what we are doing is going to keep us alive and happy for a long time. And even if we do figure it out, we are still going to die at some point. Learning to face that fear is the only way to break out of that problematic cycle, along with recognising and avoiding any reassurance-seeking behaviours. It is not easy, as the compulsion to soothe your anxiety is usually really overwhelming, and reading just one more story can provide that temporary relief. But it never works long term. This is something I have had to learn over and over again, usually the hard way.

There. I’ve said my piece. Now for the information promised.

My day

Photo by Sapan Patel on Unsplash

I am usually up around 7am, however, I’ve likely been awake for a few hours at this point. Restorative sleep continues to be a challenge for me, but I’m hopeful that the more I work on not stressing about it, the more it will balance out. Recently I’ve begun using Morgan Harper Nichol’s Storyteller App to start my day, reading her notes of inspiration and then doing a short journal entry using whatever prompt she has. You can journal directly into the app, which is handy. I’ve learned not to go on social media at this time- my brain gets too activated and I want to start my day as calm as possible. 

I am still experimenting with my morning routine. Over the last few months, thanks to brain retraining, I have been able to steadily increase my walking time, and I can now easily manage a 15 minute walk. Sometimes I get up and take my dog for a walk straight away. Other times I eat breakfast first. If I’m working on a new food, I will follow breakfast directly with a DNRS ‘round’. It’s recommended you do at least an hour of these a day, and I generally split mine up into four or five 10-15 minute blocks, as I like to do them after mealtimes. I try to get sunlight in the morning, as this has been shown to help with our circadian rhythms. 

Once I’m exercised, fed and dressed, I will try and get any ‘work’ done that I need to. I have been fortunate in that I have had the financial means to not work this year, a luxury many ill people do not have. Work for me right now looks like writing, life-admin tasks, looking for a place to live, and responding to messages in the various support groups I am a part of. I also tutor once a week. I am actively working on reframing and retraining around the concept of ‘work’ because a lot of the trauma I have is directly related to my time working as a teacher, so I generally follow this time with another DNRS round. I often have to stop and start because my perfectionism is triggered very easily and the best thing I can do for myself right now is avoid becoming too overwhelmed. If the critical voice becomes too shouty, I know it is time for a break. 

Breaks mean doing anything that is calming for my nervous system. For me, this includes things like puzzles, Lego, colouring, drawing, watching funny or light TV shows/videos (which are becoming increasingly difficult to find!), listening to music, or some form of gentle/mood-boosting yoga (e.g. yoga nidra or laughter yoga). Socialising can also be a re-energising activity for me, depending on the context. A core component of the DNRS program is maximising positive emotions as much as you can throughout the day. When you have a limbic system impairment, your brain is hardwired towards a negativity bias. We literally become addicted to negative emotions, and so it can be incredibly uncomfortable to move away from these. This usually shows up as a form of resistance, like a lack of motivation, boredom or feeling generally uncomfortable about doing something, even if it is meant to be fun.

It’s been interested to observe what my brain will resist. For example, I have wanted to watch more travel videos as inspiration for the visualisations I do as part of my DNRS rounds. But my brain was resisting this. I still feel a pull towards the doom and gloom content I’d consume a lot of during the earlier stage of my illness, despite knowing how unhelpful it is for me. Now I remind myself that this is just my brain trying to go back to old and unhelpful, yet more familiar patterns. I have learned to force myself to do a more joyous activity, even if I don’t feel like it. I generally get into it after a while and I always feel better after. This was definitely the case with the travel videos!

This is the same approach I take with doing my DNRS rounds. When people say brain retraining is hard work, what they mean is that it takes commitment. Most of the time, I don’t feel like doing my rounds or doing incremental training (where you slowly introduce things that trigger you, essentially an extremely gradual exposure therapy). But I have put my trust in this program for now and so I am just doing what I need to. I haven’t yet regretted doing a round, and like with the joyful activities, I always feel better after. I can’t say the same for incremental training, but I wouldn’t have made any of the gains I have without it.

Back to my days…

They usually centre around my mealtimes or any appointments that I have. I make sure I eat at least three full meals a day, sometimes four. Despite the challenges I have had with foods, I find preparing my meals to be a relaxing activity. I really enjoy eating and so I try to make this time as enjoyable as possible. I might listen to some music while I cook, and if I’m working with a food that has caused issues in the past, I will try and positively distract myself whilst I’m eating by either watching or reading something light. I do a DNRS round after every meal. Thankfully, medical appointments are fewer and further between these days. I have canned all appointments outside of those with my GP and any specialists. My focus right now is purely on brain retraining and crisis-aversion. 

There are some other things I always try to include in my day. I have been teaching myself to write with my left hand, as a way of trying to foster those new neural pathways. I usually write out some positive affirmations or talk directly to my limbic system, reminding it that we are choosing a different way of thinking now.  If I do any journaling during the day to process some hard emotions, it is with my right hand. My theory is that my right hand, my dominant hand, is cemented to old pathways. The left hand is for new ones. I also brush my teeth, wash the dishes and brush my hair left-handed. I have no idea if this works, but it is fun to see how my coordination is improving over time!

My night time routine is a bit more set. I generally stop using my phone by 8pm, and I have a red light filter on it permanently (to reduce blue-light exposure…again, to hopefully help restore my natural circadian rhythm). I do some gratitude journaling before bed. This was another thing I really resisted when I started doing it back in April, but has become an enjoyable part of my evening now. And then I’ll read. I have been reading a lot of nonfiction and am looking to take a break from this for now, so am trying to find some lighthearted fiction to read. Any suggestions would be great! I try to go to sleep between 9-10 on most nights. My brain tends to get a surge of energy during this time and I think it has to do with lying down and suddenly getting a rush of blood to my head. I’m trying my best to not worry about it and know that if I just keep doing what I’m doing, eventually my sleep will level out. If not, it’s okay. There are plenty of people who live full lives with terrible insomnia and I can be one of them. If I get too worked up, I’ll put on an audiobook, usually something that I know well. I’m currently listening to Ekchart Tolle’s The Power of Now for the fourth time….his voice is one that can put anyone to sleep! 

Rinse and repeat!

I’m really excited with the progress I am making with brain retraining. I have been able to expand my world in quite significant ways. I’m conscious of keeping these newsletter a bit shorter, but know that I plan to do monthly updates for those who are interested. It is so important to share our wins!

Until then,

Lou x

As always, I’m happy to answer any questions you may have. Sharing is caring in my world!