Clevermind Part 1.5

Clevermind Part 1.5

Apologies for taking so long to get this up, the last couple of weeks have been a little hectic for me and my routine has been well and truly challenged. Now onto the topic at hand…

I don’t want to go too deeply into the science of the mind – body connection, partly because digging up all of the references would be tedious and time consuming, partly because it’s already been explained for me in many books, blogs, podcasts, papers, etc., and partly because I don’t want to bore you with all the technicalities.

The essence of it is this: the brain cannot tell the difference between doing, watching, and imagining. Of course if you do a thing then your brain will receive messages from your muscles to say that they are moving, and if you watch a thing your brain will receive light signals to interpret, but the neuropathways that are created inside of the brain itself are the same.

And since your brain is the all-powerful computer that is in charge of all the chemicals and electric signals that cause changes in your body, messages in the brain cause physical effects elsewhere. This doesn’t only count for hormones and the immune system, but also the motoneurons of your muscles.

In fact, there a many studies that show muscle rehabilitation, after surgery or injury for example, can be accomplished far quicker when physiotherapy is combined with visualising physiotherapy techniques, and watching the others perform the movements. This can be measured by increased muscle mass and flexibility etc. It’s even been shown that sports ability can improve in the same way using the same techniques. Interestingly, these studies showed that you get better at replicating the thing that you are watching, so if you watch someone who is bad at golf, you will get better at golfing badly.

My questions are; if you have never played the sport before, and don’t know how it feels to swing a club (for example), will you still improve your game by watching and imagining, or does the brain need a baseline to build on. Similarly, if you are born without the use of your legs, can you still build muscle mass in your legs by watching someone do squats, or does your brain not know how to interpret that information.

Sometimes I wish I had the resources to carry out all the experiments I can think up.

Clevermind Part 2

Clevermind Part 2

Read Part 1 here.

The first book that I’ve listened to is “How your mind can heal your body” by David R Hamilton PhD. He uses referenced studies in his book, which I love, and then includes at the end of the book letters from people who have used the visualisation techniques that he recommends, successfully. Unfortunately, although there were many stories of people shrinking tumours, improving lung function, reducing arthritic inflammation etc., there was only one M.E patient story. She saw a massive improvement in her symptoms in the months running up to Christmas, by making up her own Christmas Carols with lyrics that described her own good health. She claimed that she was so well that she went for a boxing day swim in the sea and had no repercussions. I would argue that her symptoms lessened because she was happy and excited about Christmas so noticed her pain and fatigue less because she was focused on other things. I would also argue that her dip in the sea may have actually helped to treat her condition. There is a certain amount of inflammation that occurs in the M.E body and cold water treatment has been known to relieve symptoms. I would be curious to know if she had gone into the sea another time and had a flare up, or if she’d just never attempted it before.

I wish there had been more stories on my own condition, since that is the one I will be most skeptical about, but I decided (like the true scientist I am) to try out the techniques to see if I saw any differences myself. So, I used a combination of suggested methods. First, I saved 3 Youtube videos that I would listen to before bed. They explained the structure of mitochondria, the proteins that reside within it, and how those proteins work to create energy. Being a Human Biology student, I already know and understand how this works so, theoretically, that will increase the effect that it has on my body. I also created an imagined routine where I have a battery slot in my back and, before I go to sleep, I remove the batteries and plug them into my battery recharger to charge overnight. In the morning I’d put the fully charged batteries back into my back so I’d be ready for the day. The final technique I used was just to periodically tell myself that I was well and I felt fine. I also tried to stay as present and mindful as possible throughout the day, focusing on whatever I was doing at any given time in stead of letting my mind wander or using music or TV to distract my consciousness.

I didn’t fully commit to all of these techniques and generally just did which ever one I felt like at a time when I remembered to do it. But, surprisingly, I began to feel better almost immediately. This was especially shocking to me because, even though I was doing the techniques, I didn’t really believe that they would work at all. Within a week I felt amazing, more well than I have been since before the pandemic started. I was doing all kinds of chores and projects throughout the day, some mental, some physical, and never seemed to run out of energy. My feet started to ache because I’d been on them so long, but I still had the energy to keep going, and I didn’t have any flare-up symptoms at all. I could sit and rest my feet for a little while then get up again and carry on.

It was so surprising to me, that I went over everything else that I had done during the week, and the ones leading up to it, to see if anything else had changed that could explain my sudden wellness. Two things had changed aside from the visualisation techniques. Firstly, I was being more active because I felt I had more energy (again the chicken or the egg question beckons), secondly, the house was cleaner because I’d been cleaning it, but it wasn’t a cesspit before, there were just more dirty dishes and laundry about. Other than these things everything was still the same. My diet, my fluid intake, my hygiene routines, my sleep, my stress levels, no change in anything I could think of.

Then it was our anniversary. On special occasions we indulge in all the sugary, carby food we usually deprive ourselves of. We had two days of donuts for breakfast, pizza and sushi for dinner, plus snacks. I always expect a flare to follow these occasions, but it’s worth it for the celebration (like a hang-over is a risk worth taking for a good night out).

As expected Monday morning I was in a bad flare. I was in an immense amount of pain, my temperature was going up and down like a yoyo, and my body convulsed and muscles spasmed. But, even with all of that going on, I could still walk. I was tired because the pain had woken me up at 5:30am but I didn’t feel fatigued. I spent the day in bed because I know that my body needs rest to recuperate, and because that was where I was most comfortable but, after the pain killers had kicked in, I was still able to go downstairs and put together some (carb free) lunch for myself. This is unprecedented during a flare this bad, usually I’m lucky if I’m able to get to the toilet and back by myself. I suspected that it was because I had been so well previously, that I must have some left over energy that was keeping me going.

Normally a flare like this would last a minimum of 4 days, but more likely a full week is needed before I’m able to get up and out of bed properly, and then it usually takes another half a week or so before I’m able to go back to normal daily activities. Since I was feeling surprisingly good for the amount of pain I was in though, I decided to spend some more of my lying-completely-still-in-bed time to do some more visualisation.

I began with a modified version of something I heard in Dr. David’s book. It’s a breathing technique where you breathe deeply, into your stomach, then back out again slowly. As I did this I imagined my pain as a black tar inside of my body. The air that I breathed in was like a cleansing water, it went in, grabbed the tar and pulled it out. The first exhale was thick, black and sticky, but each breath resulted in a more fluid, lighter colour being excreted as it cleaned my pain away. Finally, clean water went in and clean water came out, and for a little while, my pain was minimised.

I also did a yellow-light-waterfall meditation that I used to do to manage my stress. You imagine a stream of yellow light flowing into you through the crown of your head and you watch as it slowly fills you up. You imagine the light to be warm and comforting and it helps your body and mind to relax. This is a favourite of mine if I can put aside the time to do it, and having done it many times before it didn’t take much concentration to achieve a state of calm in myself.

Another one I used when little pockets of pain just popped up out of nowhere, was to use an imaginary iron to flatten them back out again. Often the pains felt like swollen inflammation and made me think of a boxers face. In a similar way, I used an imaginary old fashioned iron to push the swelling down. The iron was cold too, so that helped to ease the red hot tissue.

Finally, I used the simple affirmations; “I am okay. I am not dying. My mitochondria are multiplying even now. My body knows how to deal with all that sugar.” I spoke directly to my body with love saying; “Thank you for trying to look after me, but we don’t need an immune response. Nothing is attacking me, I don’t need to be protected. Focus your cells on processing the sugar and all will be well again.” I repeated these frequently throughout the day.

By the end of the day I had taken half the amount of pain killers that I had expected to in the morning. I felt a definite improvement although I was still in a bad way. I slept well. The next morning, I still felt pain but it was day 6 pain, not day 2 pain. And still no fatigue, just a little tired. I felt so much better that I cooked myself breakfast (bacon, sausage, eggs) and cleaned out the cat’s litter tray. I still took a ‘rest day’ because I didn’t want to accidentally trigger my body again, but I didn’t really feel like I needed to. My brain got a little foggy in the evening, but that was about all. By day 3 I was up and about and back to doing chores and working on projects again.

To me, this feels miraculous. Never in the history of my M.E have I recovered so quickly from such a bad flare. Again, I went over the previous few weeks to see if there were any other changes in my life that could have prompted such a thing, and I came up with nothing. As I said before, it is likely that had I not been so healthy previous to the flare, I would not have recovered so quickly, but that good health in itself is still a mystery to me.

The flare-up happened last Monday. This Monday, I feel the same wellness that I did before the flare. I will continue to look for other explanations, but for now, I have to conclude that the visualisation techniques actually work.

P.s, I intended to use this blog post to briefly explain the science around why this works and other applications for it (like building muscle mass), but then I had the flare and I couldn’t not talk about that. I might still write the intended post in a fortnight but if you are interested, I would recommend reading the book I mentioned in the intro, it is well written and talks about actual experiments that have been run, rather than just talking theoretically.

Dancing In The Streets

Dancing In The Streets

To listen to me read this blog post, please click here: Reading “Dancing in the Streets”

Not many people know this about me, but I love to tap dance.

It started when I was about 7-10 years old and I took up tap and modern dancing. I loved the rhythm of it and the way I could move my foot in a particular way and it would make a noise. I also find the tapping sound itself very pleasing, like a round of applause for yourself.

I was a pudgy child and my dance teacher let me know it. She said I “bounded across the stage like a heffalump”. I gave up dancing and that sentence haunted me while I developed anorexia.

As an older teenager and young adult I often thought about taking it back up again. I really did love it and missed it a lot but my low self esteem (perpetuated by my family) prevented me from pursuing it.

Eventually I decided it was time I did something for me. That was when I bought these shoes and started going to lessons once a week. It made me very happy but my self esteem continued to get in the way then finally PTSD stopped me going.

I put a lot of effort into recovering my mental health and just when I started to feel like I was a person again, my physical health kicked me in the metaphorical testicles. My tap shoes went away and every now and then I’d pull them out, open the box, stroke them, sigh deeply, maybe cry a bit, then put them away again.

Today, I found them while going through some boxes and the feeling I had when I opened the box was so different. I lifted them out and examined them closely, all the little scuffs and scratches, and I smiled. Tap dancing no longer feels like a lost love that I’ll never see again.

I plan to take up tap dancing again once I’m driving (hopefully early February). Not having to rely on busses makes more time and places available to me, and my health is no longer an issue. I can’t wait to get started again. I can’t wait to do what I love without fear.

New Year, New Decade, New Experiences.

New Year, New Decade, New Experiences.

To listen to me read this blog post, please click here: Reading “New Year, New Decade, New Experiences”


From what I can tell from my social media pages, most people seem to have had a rough 2019. I, therefore, feel lucky and guilty that I have had a good year. The first half was a little touch-and-go but the second half was the best I’ve had in as long as I can remember. And I plan to make 2020 even better.

TRIGGER WARNING: This post is going to be self-indulgent and a little braggy. If you don’t like reading about other people’s happiness and good fortunes then stop reading now.

There’s no denying that the main reason for my happiness is my improved health and, as mentioned in a previous post, that is almost completely down to my amazing, supportive partner. I spent the majority of my illness thinking about all the things I would do if I wasn’t ill. Therefor, when my health began to improve I began to do as many of those things as possible. My main restriction shifted from energy levels to time in the day, and that is an incredible feeling.

So I guess we should start with my physical improvements. I have talked about this in more detail before so I’ll just highlight my favourite bits. I do yoga. Walking a mile to the shop is not something I have to worry about. I took up running again. Every morning I can get up, shower, brush my teeth, dress, do my hair and make-up and feel ready for the day, not ready for bed. But more than that, we can go out, for meals, to shows, to fairs and fetes, or just for a walk around the park. It’s so good to spend time with the man I love outside of this house. And inside the house I can indulge my inner housewife with cleaning, baking, mending and crafting. I can “waste” energy on doing things that are completely frivolous and purely for my own enjoyment. I feel like I can function normally again and that is such a blessing.

Secondly, this is my final year of university, which for me is the culmination of 5 years of pursuing the future that I wanted for myself. Going back to education as a mature student with anxiety and depression was daunting enough, but to get M.E in the first year of this journey really tested how much I wanted it. In year 2 I was almost completely bedbound but still managed to drag myself through because this really is the most important thing that I have ever done with my life. I am sad and scared that it is ending because it has become familiar and safe, and has helped me to grow and develop as a person. I am also excited to move onto the next step of this process and actually begin living the life I have been working towards. So many more doors will open up to me once this one has closed behind me. I have also done some work experience over the summer which provided me with connections, taken on some part-time work which has given me experience, and given guided tours of the university to potential applicants which made me so proud and happy for the next generation of Biology students.

Self improvement has been a big focus for me this year. Physical improvements I have mentioned, educational improvements too, but I’ve also spent a lot of time on self-reflection and observation. I saw a councillor for a while and she was great. She asked the right questions and got me to focus on who I was and what I can do. Often we look outward to place blame and seek happiness. This year I have learned and internalised the idea that I have no control over others and the world around me, but total control over my own actions. I am responsible for my own happiness and I am to blame for my poor choices or reactions. In this way, I can make my life what I want it. My self-reflection has also lead me to ask the bigger questions too and I’ve revisited Zen Buddhism and listened to the Bhagavad Gita as well as “Letting Go” by David R Hawkins M.D PhD, and “The Madness of Crowds” by Douglas Murray. I also listened to “Battle Scars”, “Break Point”, and “First Man In”, by the hosts of the TV show “SAS: Who Dares Wins”, Jason Fox, Ollie Ollerton and Ant Middleton respectively. I also scattered some fiction in between because even made-up people in made-up situations can teach us things about ourselves. I started a Bullet Journal this year too as a creative outlet and to organise myself, but I also found that it motivated me to be more productive and to enjoy taking time over small details.

My domestic life this year gained a house, a cat and an improvement in my relationship. I don’t wish to talk too much about this as it is not just mine to divulge. My home life is shared with my partner and he deserves his privacy. I will say that I am feeling more like a wife and mother than ever before and that is a warm, comfortable feeling for me. I will be having my 30th birthday this year and I am more than ready for this phase of my life. In fact, I have been waiting for it for a long time but it has been waiting for me to be in the right place and the right time. All the chips are falling into place now and I feel like I am becoming the person I was always supposed to be.

So, to summarise, 2019 has been a year of exponential growth. It has been hard work, exhausting at times, but also enjoyable and so, so worth it. 2020 should continue this trend and although this time next year my life will look completely different, it will also be exactly as it should be.

Happy New Year. Best wishes to all of you.

To Rest or not to Rest

To Rest or not to Rest

Something happened to me this morning. My alarm woke me up in the middle of my sleep cycle and for a few seconds that felt like minutes, I was laying there, awake, hearing my alarm, knowing I needed to roll over, stretch out my arm and hit the snooze button, but being completely unable to move. When my body did finally respond, it shook and spasmed. The signals from my brain were not reaching my limbs properly, or maybe they were but my muscles were unable to perform their tasks correctly. They didn’t hurt but my ribs did and I felt sick and panic and my heart raced with exhaustion at every movement. I thought that it felt like a flare, except for the lack of pain, and I wasn’t sure what to do. But I needed to pee, so I forced my body up. It was clumsy and took far more strength and effort than it should have. I walked like I used to; slow and shuffling and had to steady myself on the wall. When I stood from sitting I had to pull myself up because my legs couldn’t manage it by themselves.

I stared myself down in the mirror, tears in my eyes, terrified that my good health was just a dream and that this was my crashing back down to earth, but I determined not to ruin my perfect streak and let my illness take over my life again. So I brushed my teeth and got dressed slowly and carefully, focussing my awareness on the signals from my body. I felt it slowly remembering how to move properly. I felt exhausted but my muscles weren’t fatigued, just lazy. The sickness persisted but my chest pain eased and breathing slowed.

I decided not to take my cane at the last minute. It may have helped but it felt like surrender and I was worried it would draw attention. I was slow moving but I could walk so I would. I took the shuttle bus into uni instead of walking the 10mins in and got the lift up to the second floor instead of using the stairs and decided that would be enough to save my energy.

I got to class, took my book and pen out of my bag then tried to write the date. I could not. My hands would not hold my pen correctly, the strokes I forced on the page were jagged and strange. My major motor functions were slow but working, my fine motor skills were not. I left everything where it was and walked out of the classroom and turned the corner. I burst into tears. I cried, then I wiped my face, pulled myself together and went back into class. I wrote a little in the strange chicken stractch of my malfunctioning hands and almost dropped the lid from my drink when I tried to unscrew and replace it. I then emailed my boss to let him know I wouldn’t be coming into work that afternoon. Taking notes in class is one thing but working in a lab in that condition would be dangerous and irresponsible.

I came home and put on a film to relax and rest to. There was some improvement as the evening went on but not much. I went to bed early.

I’ve not been sleeping well nor eating or drinking enough and I am stressed from the amount if work I have to do. It’s not really surprising that I burned out, anybody would, but today was terrifying for me.

Maybe I should have stayed home and rested all day but I would have hated myself for it and spent all day wallowing in self pity. At least by going into class I felt like I was trying and doing that gave me the space of mind to determine what I was and was not capable of. I’m glad for the decisions I made but I don’t know if they were the right ones.

The Miracle of Science

The Miracle of Science

On March 21st bought my first wheelchair because walking is getting harder and I knew that my 3rd year of University would be more challenging than the previous two so I might need some extra help getting around. Exactly 4 months later, on July 21st, I went for a walk, for the first time since I got sick, without my cane. Today I am going to tell you about my miraculous recovery.

Over the past two weeks I’ve been doing something incredible for my own personal development and also for my future career prospects; I did two weeks of work experience at a biological laboratory. The shifts were 8:30 a.m. until 5 p.m. and I was on my feet most of every day. The Laboratory was based in the next county over so I had to take two buses to get there, meaning that I woke up at 5 a.m. and often didn’t get home until 7:30 to 8 p.m. On the Saturday between the two weeks I also volunteered at my university as a tour guide from 9 a.m. until 3 p.m. standing, walking, talking, and going up and down stairs. If you had asked me back in March if I thought I’d be able to do such a thing, I would have laughed to hide my tears. “I really wish I could,” I would have said “but it’s just not possible.”

This past week I have been able to stand in the shower while I wash my hair and shave my legs, and then dry and dress myself without having to sit down. I have skipped across a car park, run up the stairs, and chased my partner around the room in a play fight.

Don’t get me wrong, I’m in no way “healed” or “cured”, I’m not even back to how I was before I got sick in the first place. I still have to pay very close attention to my body when it gives me those signs and signals to say “you’re near your limit. You’ll flare if you keep pushing.” But, I’m slowly starting to to be myself again.

So how did I do it? Firstly, let’s not underestimate my constant self analysis. I learned about my illness not just through internet searches, community engagement and books, but also through constantly listening to my body and watching how it reacted to certain stimuli. So I knew my limitations well and I could sense when my body had had enough. I knew when I could push harder and when I needed to slow down and rest so the only times I would have a bad flare was when I had to do something unavoidable or I got sick and my body put all its energy into fighting that. This is something that all chronic illness sufferers should do, especially when they have an illness that doctors know little about and there is little treatment for. Know yourself, your body, your illness and advocate for yourself, do what you know is best for you. Once you’ve reached this point, then you can start experimenting with treatments because you’ll be able to feel whether it’s helping or hurting you more. The one that helped me is Dr Sarah Myhill’s Keto Paleo protocol. I’m not going to go into great detail about it here because I have done so elsewhere and also she will explain it better than I can so if you’re interested you should check out her website. I will also insert my video here so you can watch me explain it poorly. Again, the important thing here is that you know what should happen during this process and that you know you’re body well enough to know whether what you’re feeling is expected or something to worry about.

It took about 6-8 weeks for me to start feeling a change. I began to increase my activity slowly and carefully taking a step back if I needed to. But when I first started calling it a success was when I was tired then rested then felt refreshed. This was something my body never did, I used to wake up exhausted but now I was starting to feel like my body was recovering while it slept like it should.

My diet and lifestyle is something I have to stay on top of and if I let it slide too much I start to feel the old fatigue and pain start coming back, but living this way has given my life back so I am happy and willing to do it for the rest of my days.

Hope and Hopelessness

Hope and Hopelessness

I have been planning a different post for you to read, but yesterday the Great North Run was on, so I decided to give you a more emotionally driven post instead.

This time last year I was running. I couldn’t run very far or for very long but it was more than I had ever run in my life before. I got ill around March 2016 and after I’d had enough doctors appointments to know that I wasn’t going to get better any time soon, I decided that I would not let my illness control me or dictate what I could or couldn’t do. So I started an exercise regime. It was simple and easy at first, then got harder and more intense as I grew stronger and more capable. By September 2016 I was running three or four times a week around the local cricket pitch. I was heading off to my first year of University and I had plans. I was going to join the running club, swimming club and play badminton at the weekends. I had bought myself a cheap, collapsible cane just in case but didn’t think I’d actually need it. I had been walking unassisted for months, I was actually fitter then than I had been before the illness arrived.

So I went off to Uni full of hope, comfortable in the knowledge that I had taken control of my illness and I alone would decide what I would or would not do. I joined the running club and signed up for Swimfit sessions, I was playing badminton at the weekends and I felt great. Then November happened. I still cannot say whether it was because I came off of my medication, or if I had simply pushed my body too hard, but either way I succumbed to an almighty crash. My body stopped working the way it should, the way I expected it to. The furthest I could walk was to my bathroom and back, the rest of the day was spent sitting or lying down. I couldn’t even stand in the shower to wash my hair. I was taking Ibuprofen every four hours to keep the pain at manageable levels and I barely slept.

A year on and slowly but surely I have regained a decent amount of my strength and for the most part I am satisfied with my abilities. I can care for myself, go to the shop for things I need, I can study and I can even have the occasional day long outing. Relatively speaking, I am fortunate that I am able to do so much. But yesterday the Great North Run was on T.V and I am reminded of my goals and ambitions. Not only was I going to run a half and full marathon, but there were mountains I planned to climb and lakes that I was going to kayak across. I wanted to play Badminton on the University team and I was going to be a Nurse and travel abroad with Doctors Without Borders. Now my goals include being able to walk without a cane again and enjoying a whole day out without needing a days worth of bed rest to recover. These thoughts sting at the eyes and throat.

I think that staying positive can have its place. I think that seeing obstacles in life as challenges to overcome can make you a stronger person. I also think that there is a time to mourn the loss of dreams that may now never be. I have overcome much already. My past is nothing but boulders and hurdles that I have struggled over and it seems sometimes that the euphoria of having overcome your last challenge acts as a mirage, obscuring from view the minefield ahead. I think that, when the mirage fades and you can clearly see the nightmare that lies ahead, positivity is of no use. I think in a situation like this, all you can do is keeps your eyes down and place one foot in front of the other. “Plodding up the hill” my therapist used to call it. Feel sad for your perceived loss, feel sorry for yourself and your struggles, accept that life is hard and that it may be that way until you die, but keep plodding up that hill anyway.