My never ending quest to understand myself and the world around me
I am happily married with two grown up daughters. I have suffered from depression and fibromyalgia for most of my adult life. I was diagnosed with autism spectrum condition at the age of 42. I have now found a sense of peace in my life and want to share what I have learned.
I am now so close to reaching my target weight (3-4 lbs away) I am starting to take stock of what my body looks like after losing so much weight. I am not vain in any way but I would like to feel confident enough to wear the clothes I have wanted to for years.
When I reach my target weight I will have lost 10 stone (140lbs) and I have been left with a lot of loose skin on my upper arms, stomach, bottom and inner thighs. I have been aware of this for a while but didn’t realise quite how bad it looked until I saw myself in a full length mirror without any clothes on a few weeks back. Below is a photo of the loose skin on my stomach.
I had already considered having skin removal surgery on my arms but I am now seriously considering having it on my stomach too. I think these two areas will make the biggest difference to my appearance. I recently met up with an old friend who had both of these procedures ten years ago and she still looks great. I’d already found an excellent plastic surgeon and by chance it was the same surgeon that had operated on my friend so I know I have made a good choice.
Being me, I have done a lot of research and have watched countless videos on YouTube. The tummy tuck (abdominoplasty) seems to be the more major of the two procedures and I am certain I will require the full tummy tuck as I have loose skin above the belly button. This will involve extensive muscle repair which some people find to be quite painful afterwards. As a fibromyalgia sufferer this is something I will have to seriously think about. The other major concern for me is the pain relief I may need to take immediately following the surgery. Since coming off my opiate medication in March 2019 (apart from a single dose of dihydrocodeine after my gallbladder surgery) I have not taken anything stronger than paracetamol. I’m not going to be stupid about but I want to keep the stronger painkillers to minimum. I could have NSAID painkillers instead of opiates but there is a risk of bleeding with them. This is one of the many questions I will have to ask my surgeon.
I have decided to wait until after my birthday in February before making an appointment with the surgeon. This is because I usually have a bad patch with my depression after Christmas and I don’t want to compound this low period with major surgery. It will also give to me time to think about whether I’m doing the right thing. At the moment I can’t see me changing my mind and I’m quite excited at the thought of finishing my transformation. It’s been a long time coming!
I have always loved classical music. It was hearing Beethoven’s Sonata No. 14 in C# minor (more commonly known as the Moonlight Sonata) at the young age of 4 that first made me interested in piano music in particular. During my childhood and teenage years I listened to more of Beethoven’s music and loved it; other composers barely got a look in. Like many people I recognised a lot of classical music pieces but didn’t know the name or the composer of them. I knew Chopin by name but it wasn’t until the movie ‘The Pianist’ was released that I learned to connect his music to his name.
Chopin predominantly wrote for the piano which makes him unique among composers such as Beethoven and Mozart. Chopin composed his music during the Romantic period. During this time the range of the piano was increased and its tonal power improved. As a result the piano became the most popular solo instrument. There is something very freeing about Chopin’s music. No longer confined to the strict phrasing and a consistent tempo that were popular in the Classical period, Chopin was able to express his music exactly how he felt it. Often his inspiration came from Polish folk tunes and these can be found in Polonaises. For me though it is the beauty of the Nocturnes that move me the most. As I’m a miserable so and so, the Nocturnes in the minor keys really touch my heart with their melancholia.
It wasn’t until I read a very long biography about Chopin that I feel I now understand the man behind the music. I’ve decided to share a very brief overview of his life in the hope that anyone reading this will feel the same.
The Life of Chopin
Fryderyk Chopin was born in 1810 in Żelazowa Wola, Poland. Chopin was a sickly child and is thought to have had many food intolerances. As an adult he reached the height of 5 foot 7 inches but weighed less that 99lbs. His incredible gift for music was evident at a very early age and although he had a couple of piano teachers his prodigious talent for the instrument meant that they were rendered unnecessary. In 1826 he attended a three year course at the Warsaw Conservatory under the composer Józef Elsner. He continued to compose during this time and performed in local salons and concerts. In 1826 Chopin fell very ill for 6 months and later in 1830 a chronic cold led to him having cancel several concerts. It is likely that Chopin already had tuberculosis at this time.
In 1830 he left Poland and although he didn’t know it at the time, he would never return. He settled in Paris in late 1831. It is not known exactly when Chopin met the fellow composer Franz Lizst but it is known that he was in attendance at Chopin’s Parisian debut on 26th February 1832 at the Salle Pleyel. Lizst said after the performance that “The most vigorous applause seemed not to suffice to our enthusiasm in the presence of this talented musician, who revealed a new phase of poetic sentiment combined with such happy innovation in the form of his art.” Chopin and Lizst had great respect and admiration for each other but it is known that their was a fierce love-hate relationship between the pair.
Due to Chopin’s delicate health it was often said that Chopin’s piano playing lacked the strength and vigour necessary for concert hall performances. However no one was in any doubt of his virtuosity and unique talent.
From 1842 onwards Chopin’s health deteriorated to the point that he had to spend many hours a day laying in bed and was in a lot of pain for most of the time. His mood would lift when he was able to play the piano but as time went on this became more difficult. A seven month visit to Great Britain 1848 under the care of his friend Jane Stirling where he had to perform to many of his friend’s acquaintances led to a very rapid decline in his health. He returned to Paris in the November of 1848. It was obvious by now that his tuberculosis had entered its terminal phase. In June 1849 his sister Ludwika came to Paris to look after him. Due to not being able to teach or perform he was now penniless. It is known that Jane Stirling supported Chopin during this time with a loan. Only his sister, his physician and a handful of friends remained with Chopin to the end. On 17th October after midnight his physician asked him if he was suffering greatly and Chopin replied ‘No longer’. Fryderyk Chopin died at a couple of minutes to two in the morning.
At Chopin’s request his heart was removed prior to his burial in Paris and was returned home to Poland where it was interred in a pillar at the Holy Cross Church in Warsaw.
Fryderyk Chopin requested that all of his unpublished manuscripts be collected together and burned. He didn’t want any of his music that he hadn’t completely perfected to be released to the public. Fortunately his sister, Ludwika thought differently. All of his manuscripts were collected into a suitcase and were entrusted to Chopin’s friend Julian Fontana. Chopin’s family gave Julian Fontana permission to publish any music he felt of sufficient quality. Among these pieces were two Nocturnes. The first was the Nocturne in C# minor that features heavily in the film score of ‘The Pianist’. The second was the Nocturne in E minor which, for me is perhaps the most beautiful piece of all. I can only hope to do it justice in the future.
I have spent considerable time in my life worrying about my eating and weight. I’ve always used food as a comfort during times of stress, ill health and sadness. When I was very ill with major depressive disorder in the late 90s and early 2000s this led to me becoming morbidly obese. At my heaviest I was 300lbs/136kg (21stone 6lbs). I reached this weight by consistently overeating every day rather than binging.
As previously mentioned I made the decision to deal with my weight problem once and for all in the summer of 2017 and I have successfully reached a healthy weight. However I know the old me is still there in my head and it would be very easy to regain every pound I’ve lost. What’s really weird though is this version of me has become an internal voice that I have to fight against. I’ve nicknamed it ‘The Binge Monster’. This is an example of a conversation I had with it last week:
The Binge Monster: You could really do with some chocolate.
Me: I don’t need any chocolate and I don’t want to gain any weight
The Binge Monster: But you could have a small bar and build it into your allowance.
Me: Yes I could but I’d want more.
The Binge Monster: So you do want some chocolate. Just have it and get back track afterwards.
Me: I really shouldn’t
The Binge Monster: Go on it will taste so good and make sure you get a big bar.
The Binge Monster: You’re not weighing in at Slimming World this week so you’ve got a whole week to make up for it.
At this point I gave in and had a 110g bar of Cadbury’s Dairy Milk. It tasted great but I beat myself up afterwards for being so weak. This slip led to me having a couple days of eating a bit extra. I’m now back in control and have been for 4 days. The Binge Monster is still there grumbling in the background dropping hints that the biscuits in the cupboard look tempting but I’m able to ignore it at the moment. This is the way it has been for the past 4 years and the fact that I am still a healthy weight means that I am winning this war.
For anyone who is thinking I’m showing signs of schizophrenia; I’m really not. I have total control and know deep down that The Binge Monster is really just me arguing with myself. I just find it helpful to give that part of me a persona. It makes it easier for me to recognise the times when I’m fighting against the urge to eat unhealthily.
For as long as I can remember I have always sought achievement over everything else. In my early years at school I judged myself by comparing which colour books of the reading scheme I was on compared to my peers. When I was a Brownie I constantly planned on which badges I was going to work on next. I set myself impossible goals and then berated myself when I couldn’t achieve them. Setting these goals would often lead me to procrastinate in starting new tasks for fear of failure.
Academically I have been very successful. I have a 2:1 Bachelor of Science honours degree in Molecular and Cellular Biology and a Master of Science degree with distinction in Computer Science. This should be enough to prove to myself that I’m what – worthwhile? I honestly don’t know what it is. What I do know is that I’ve been trying to prove ‘whatever it is’ to myself my whole life and it has become detrimental to my wellbeing and it has to stop.
In July 2020 I set myself the goal of taking my ABRSM Grade 5 piano exam. I worked really hard, did all the preparation and really enjoyed the challenge. However it took over my life and I haven’t thought of anything else for six months. I took the exam yesterday and the stress caused me to have a memory block in the middle of one of my pieces. Fortunately the examiner was very kind and encouraging and I managed to complete the piece. The rest of the exam went reasonably ok and I’m fairly sure I’ve passed. For a couple of hours after the exam I was beating myself up as my goal was to get a distinction. Once I’d calmed down and really started to think about it, one thought kept coming back to me over and over again, “What the f@*k am I doing to myself?”.
I’m sure that striving for achievement was one of the factors that led to me developing fibromyalgia and chronic fatigue syndrome. Over the last few years I have made great strides in regaining some function and if I don’t stop putting myself in these stressful situations I could jeopardise this.
In short, I’m done with trying to prove whatever it is to myself. No more practical music exams, no more impossible goals, no more strict deadlines and most of all no more self-imposed stress. It’s time for me to enjoy what I have achieved in my life and be content with that. I’m going to learn piano pieces that I love rather than what’s on a syllabus. I have a very happy marriage and two gorgeous, well-adjusted grown-up children of whom I’m extremely proud. It will take some time to adjust my thinking but once done my life will be all the richer for it!
One of the features of autism is rigid thinking and I have certainly had issues with this over the course of my life. Recently I have been obsessed with reaching a set target weight in my weight loss endeavours. I was told by a doctor when I was in my teens that this weight was my ‘perfect’ weight. It also had the appeal of knowing that I’d be able to say that I’d lost a total of 10 stone. What I found myself doing was deliberately sabotaging my eating as I sought what I saw as perfection. I have to accept that I’m older now and have a lot of loose skin from being morbidly obese, it’s just not a realistic goal anymore. I have adjusted my target weight and now only have another 6.5lbs to lose to attain it. I may find myself losing a bit more but I’ve taken the pressure off and I no longer feel the need to self sabotage.
My daughter, who also has autism is very set on the age of films she will watch. She thinks that any film made before the year 2000 isn’t worth watching. I keep telling her that she is missing out on some wonderful films but she is adamant that anything before this date is ‘rubbish’.
A couple of months ago I found myself doing something similar. I tended to dismiss animated films/TV shows as not worth watching. I think years of watch Disney/Pixar when the girls were younger had taken it’s toll. My husband has been interested in Japanese anime for a while now and suggested watching a series called Attack on Titan. I really wasn’t keen to try it – after all it was a ‘childish cartoon’ but unusually for me I decided to give a few episodes a go.
After two episodes I was hooked. Attack on Titan was very definitely not for children, in fact some scenes were traumatising for me. What struck me was how deep the story and characterisations were. The writing was phenomenal and completely different from anything I’d seen or heard of before. I hadn’t experienced much of Japanese culture before this and I was fascinated. The storylines were also very different from anything read before. I have often thought that films reuse ideas from previous films far to often. For me anime was a something entirely new and exciting.
Anime has fast become a new special interest for me. I’ve just started watching my fourth new series last night. It’s great to have a new interest that I can share with my husband. This has definitely been a learning experience for me and I intend to try other things that hitherto I’ve dismissed.
I haven’t posted in while as I was dealing with my usual post Christmas depression. This lasted all of January and most of February. I have now flipped the other way and I’m feeling really motivated and happy so it’s difficult to write about anything relevant to the theme of this blog.
The Associated Board of Royal School of Music deferred all of their practical exams until the summer so I was unable to take my piano exam this term. It was a real blow and threw me for a while. My pieces were ready for performing and I had to put them to one side to avoid them getting stale. I’ve been working on a few more challenging pieces and have discovered that I absolutely love Frederic Chopin’s piano works, especially the nocturnes. I tend to prefer pieces in minor keys as I’m a miserable so and so and I cannot learn a piece of music unless I can feel it. My practice is limited by my fibromyalgia. I can only practise for 45 mins to an hour before my back starts burning and I try to do two sessions a day.
I’m still not quite there with my weight loss. When the UK locked down in early January, Slimming World had to switch to virtual meetings over zoom. While it’s great to still be in contact with everyone it just isn’t the same. I had a couple of slips and regained a little. I have lost all but a couple of pounds of it. The good news is that the face to face groups restart in mid April so hopefully I can finally shift the last ten pounds.
I hope I can continue feeling this happy. As long as I keep up my healthy eating and piano practice I should be alright. I know from past experience that I am an all or nothing kind of person. If one area of life slips then it all slips. I wish I could work out why. I’ve done a lot of introspection over the years and have overcome a lot of my hangups but this one remains and I don’t how to move forward. I guess my brain is still faulty.
I have tried to write a post about the pandemic many times over the past few of months but every time it has turned into an almighty rant. I have been absolutely dismayed by the world’s response as a whole. From mismanagement by government leaders to members of the public declaring the whole thing a hoax. It is absolutely staggering to me that people are talking of their civil liberties being taken from them and refusing to wear a something simple as a damn mask in public places. Some countries like New Zealand and Vietnam have managed to get the virus under control but countries like the US and the UK (my country) are currently showing record numbers of daily cases and are waiting too long to take appropriate action. I appreciate the effects that lockdowns have on the economy especially in the short term but if the UK had controlled the virus early on, our economy would have had the chance to recover now. The UK government has wasted £10bn on a private track and trace system which has been shown to be useless when they could have used the infrastructure of the NHS already in place. This wasted money could have been used to support people and businesses through an extended lockdown and we wouldn’t be in this mess. The delays in controlling the number of infections has created the opportunity for the virus to mutate into a more infectious form making it even more difficult to control. Ok rant over!
On to more pleasant things. I started to have piano lessons again in July and have progressed well. It turns out that consistent practice really does pay off. I am going to take my ABRSM Grade 5 exam at Easter (pandemic allowing). I managed to sell almost all of my reborning kits which gave me enough money to invest in a lovely Yamaha U1 piano which is my pride and joy. I still find sitting at the piano uncomfortable but I’ve learned to pace myself and split my practice up. My main weakness is sight-reading; I hate it with a passion. I can’t bear to hear mistakes in music and no one sight-reads perfectly. I’ve got 3 months to improve the situation.
I’ve always doubted my ability to progress beyond Grade 4 but if the past few months have shown me anything it’s that I can do anything I want to as long as I set my mind to it. I’ve always loved Chopin’s posthumous nocturne in C# minor but never thought I’d be able to play it. I still can’t play it as it should be played but I can fudge my way through the first third of it; even managing to play triplets over quavers (for those of you musically minded). This has shown me that with perseverance many more pieces are open to me. I didn’t realise just how much I missed my music until I got it back.
Fixations or obsessions are common in autism. They can take various forms such as continually discussing the same topic in conversations or researching and reading every article on a topic. When I was younger a lot of my fixations were based around people. I had a teacher in secondary school that used to make lessons so much fun that I literally worshipped the ground he walked on. I shudder to think what he thought about it. It took him leaving the school for me to get over it. I still think about him occasionally, no one forgets a good teacher!
More recently my fixations have been around my hobbies. For nearly a decade it was reborning. I watched YouTube videos, bought all the books, did courses and bought every kit that was going. I’m now in the position of selling my supplies trying to make back some of the money I spent.
Currently I have returned to my music. The new ABRSM syllabus is released tomorrow which covers 2021 and 2022 and I am hoping to finally take my Grade 5 exam. I have been somewhat hampered with my health over the past few years but I feel a lot stronger now and able to tackle the hours of practice required.
My renewed interest in music has led to one of my biggest fixations in recent years. I had a video recommendation come up in my YouTube feed for the song ‘Gethsemane’ from Jesus Christ Superstar sung by Michael Ball. Listening to it gave me the chills and the hairs were standing up on the back of my neck. In the past this may have led to a fixation on Michael Ball but for me it was the song. I have now listened to as many versions of this song as YouTube has to offer and have settled on Steve Balsamo’s version. This version makes me cry every time and I can’t stop listening to it. I haven’t been able to sit still all afternoon. I love this feeling!
Plato is quoted as saying that necessity is the mother of invention. The current world pandemic has forced medical scientists into a desperate search for a vaccine against the coronavirus, SARS-CoV-2.
In the past vaccines have been one of 3 types:
Dead vaccine – the pathogen is rendered non-infectious but is still able to elicit an immune response thereby conferring immunity.
Attenuated vaccine – the pathogen is changed to make it unable to induce symptomatic disease but is still able in infect the host. The immune system mounts a response conferring immunity against the original pathogen as well as the altered pathogen.
Sub-unit vaccine – part of the pathogen (e.g. an external protein or ‘spike’) often with an adjuvant (a substance that stimulates the immune system) which elicits an immune response thereby conferring immunity.
Today I watched a documentary on the search for a vaccine for SARS-CoV-2 that is similar to type 3 but differs in one crucial aspect. Back in January Chinese scientists sequenced the genome of SARS-CoV-2 and scientists in the UK have identified the sequence that encodes the protein spike of the virus. They are now using bacteria to create multiple copies of the genetic code (RNA in this case) for this spike. It is hoped that when injected into muscle tissue the muscle cells will take up this genetic material and begin making copies of the virus spike; in effect creating their own subunit vaccine. The scientists are currently doing trials on macaque monkeys and if successful, human trials will follow. If this methodology works and a vaccine is developed it will fundamentally change vaccine research in the future especially against viruses. This technique may not have ever been considered if it was not for the current pandemic hence the quote from Plato.
As for me I’m coping quite well at the moment. It’s been nice having my husband and daughter for company the last few days due to the bank holiday. I have lined up a couple of craft projects to keep me occupied in the coming weeks.
EDIT: I need to add a correction. The team at Oxford are not solely using the RNA sequence for the spike protein as a vaccine. They are cloning it on to a cold virus which is then injected. The principle is the same with the hosts own cells making the spike protein to elicit the desired immune response to confer immunity to SARS-CoV-2.
Like most of the worlds population we have been in lockdown and social distancing for almost 2 weeks and it has taken me this long to adjust emotionally. Like most autistic people I don’t like change and find it difficult. It’s quite weird because my day to day life isn’t that different as I’m not one for going out a lot. What has changed is my weekly routine. I’m used to my Mum coming over for dinner 3 times a week and going to Slimming World on Fridays. I’m used to being able to pop to the local supermarket and getting anything I need whenever I want. I didn’t stockpile anything when the panic buying began and became very anxious when I couldn’t get any pasta (why?).
I am not anxious about the current world situation because thanks to my education in molecular and cellular biology I understand everything that is going on. I’m not a fan of our current government but I cannot fault their response (ok maybe the schools should have closed a week earlier) to this pandemic. They have listened to the scientific experts and responded accordingly. Until a vaccine is available the world is going to face several waves of this pandemic and will have to have periods of lockdown to curtail the spread of the virus. At the moment we do not know if the coronavirus mutates enough to enable the reinfection of a previously immune host. If the virus does mutate in this way any vaccine created will be rendered ineffective and the worlds scientists will be forever playing catch up.
The changes in routine have led to a resurgence in my depression which has a knock on effect in the other areas of my life. I managed to stick to my eating plan until day 8 and then had 4 days of terrible eating. I have since given myself a talking to and devised a way to cope. Each day I am giving myself a list of tasks to do and I’m making sure I go out for a short walk. It’s only when I’ve done these two things that I allow myself to relax and do my hobbies. Without this structure I was watching YouTube videos all day and not achieving anything at all.
As I find writing therapeutic I’m going to be blogging a bit more. These posts will be primarily for me just to record my thoughts so I won’t be linking to them from my other social media. I need to create a new routine to maintain normal brain function.