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What have I been trying to prove to myself all these years?……..

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!

Autism

Keeping an Open Mind……..

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.

Attack on Titan

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An update……..

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.

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Catching Up……..

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.

Autism

Autistic Fixations……..

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!

Isolation

Necessity is the mother of invention……..

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:

  1. Dead vaccine – the pathogen is rendered non-infectious but is still able to elicit an immune response thereby conferring immunity.

  2. 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.

  3. 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.

Depression, Isolation

Isolation Day #13……..

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.

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It’s all in the DNA……..

I have always had a fascination with genetics and it was this that made me choose to study molecular and cellular biology at university. At this time (the early 1990s) The Human Genome Project started which was the first attempt to sequence an entire human genome. The technology at the time was limited and the project took 13 years to complete. Fast forward to today and it is now possible for anyone to spit in a tube and get their genome sequenced in a mere 6 weeks. My youngest daughter Katherine had her genome sequenced last year and the results we sufficiently interesting enough for me to want to do the same.

The information that you can get from genome sequencing comes in three sections:

  • Ancestry Composition

  • Carrier Status

  • Health Traits

My ancestry composition can be seen in the diagram below:

ancestry

The first surprise was that I was only 51% British. Through my genealogy research I’ve known for a while that many of my ancestors came from France but my DNA shows that I also have ancestors from Germany. In particular 10.5% of my DNA comes from the Ashkenazi Jewish population that settled along the river Rhine in the Middle Ages. It is thought that this population consisted of around a mere 330 individuals. In scientific terms this is called a genetic bottleneck. I will never be able to prove it but I suspect that this ancestor was through my maternal grandfather’s mother (my great grandmother). When looking at photos of Ashkenazi Jews there are some striking similarities in appearance to her. I am so proud to be 10.5% jewish as I have had done a lot of research into jewish culture over the years.

Katherine’s results showed that she was a carrier of the extremely rare genetic disease Zellweger Syndrome Spectrum. My results confirmed that she inherited this allele from me. Zellweger Syndrome Spectrum, as the name suggests covers disease with varying severity. The gene itself (the PEX gene) codes for a protein that is part of the structure of the intracellular organelle called the peroxisome. The peroxisome is involved in the cutting of long chain carbon molecules (e.g. fatty acids) which are then used by the mitochondria to create energy for the cell. The more severe cases of Zellweger Syndrome are invariably fatal within the first year of life. There hasn’t been anyone in my immediate family that has had a child with Zellweger Syndrome. Thankfully it is extremely rare. For comparison, the prevalence of cystic fibrosis is 1 in 2500 births; Zellweger Syndrome is 1 in 50,000 births.

Katherine was also found to have two copies of a gene for a condition called haemochromatosis which is an iron overload in the blood. Obviously one of these genes came from me. Fortunately the particular gene variant we have does not put us at an increased risk of developing the disease. This result was a bit ironic as David’s grandfather actually had haemochromatosis and he has been having blood tests every five years to check for iron overload and we now know that he is not at an increased risk of developing this condition.

The only results that were particular to me was a slightly increased risk of developing late onset macular degeneration and Alzheimer’s disease. I also have a 20% chance of developing type 2 diabetes. My recent diet changes will probably be enough to mitigate this risk. I was also relieved to find that I do not have a genetic predisposition for bowel cancer. I have had relatives on both sides of my family die from this cancer.

All in all I am really heartened by the findings in my genome. I was also able to download the raw data (genomic sequence) in file which I can use in third party programs. The company I used will also update me as more genes are identified so this is an ongoing quest.

Depression

Brain Malfunction………

Since Christmas my brain has been working against me. I always struggle with my depression in January and this year has been no exception. Just after Christmas I wrote a list of all the things I’d wanted to achieve in 2020. Due to being so unwell in 2019 I felt like it was a year wasted. We are now in the second week of February and I have yet to even start anything on the list.

I’ve mentioned Behavioural Activation in a previous post as a way to stop my procrastination but as of yet I haven’t even begun to look at it. I know I need to make a start and it is getting to the point where I’m just going to have to force myself to do it.

I think I am slowly coming out of it though as I’m finally going to go swimming this afternoon. I really need to increase my activity as I’m struggling to lose the last bit of weight. I am so close to being a healthy weight -only 3lbs away- and it’s become more important to me as I’ve had my genome sequenced (I’ll write another post on this later) and it shows that I’m at an increased risk of developing type 2 diabetes. For me, losing weight was always about my health so this has lit a fire under my butt!

I’m also starting to look forward to the rest of the year. David and I will be celebrating our silver wedding anniversary in September and are planning a trip to the US. We’ve always wanted to go to Universal Studios in Orlando, Florida and I really want to visit the Atheist Community of Austin in Texas so we will be doing both.

I think it is obvious to anyone reading this post that it was written over a period of a few days. The first two paragraphs were written two days ago when I was feeling very low and the remainder was written today. I find writing this blog extremely cathartic and I think this post has moved my brain into action.

Mathematics

Revisiting Old Friends……..

I desperately need to get some structure to my day. I’ve been spending far too much time watching videos on YouTube and my brain is stagnating. My hobbies do not tax my brain enough so I have decided to prepare myself for doing an Open University degree in mathematics.

I did a number of university level courses in maths on Coursera.org about 8 years ago which I really enjoyed but feel that I need a thorough revision of the fundamentals to ensure that I have all the bases covered.

I had a quick look at the current A-level text books and found that they didn’t appear to be at the same level that I remember from sixth form. I remembered the books I had at school being far superior but I couldn’t remember the authors. I knew the pure mathematics book was blue and the applied mathematics book was orange. I did a search on amazon and initially came up with nothing. I then saw a book that looked similar and immediately recognised the names of the authors; L. Bostock and S. Chandler. The text books by these authors for A-Level Maths and Further Maths were still in print but pricey at over £40 each but I managed to buy a second hand set at a total of £40 for all four.

I am now eagerly awaiting delivery and welcoming back some old friends. Hopefully this will fill the void in my life at the moment.