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.
Ever since I started taking my piano playing more seriously I have been entranced by the music of the Italian pianist and composer Ludovico Einaudi. There seems to be a difference of opinion among the critics as to whether his music is genius or too simple. I love the way he builds up an atmosphere in his pieces with repetition and increasing complexity. Many of his pieces can be played solo on the piano as well as with a full orchestra. I fully intend to go one of his concerts when he is next in the UK.
I have attempted to learn a few of his easier pieces and I am making progress. I decided to listen to as many of his pieces as I could to make a shortlist of the all the pieces I’d eventually like to be able to play. True to my autistic self I then grouped them by difficulty and ranked them again within each group. Here is my list:
Group 1 (Easiest)
Group 2 (Intermediate)
Group 3 (Advanced)
I am confident on learning the pieces in Group 1 without help but the rest might require some assistance from a teacher. I have made a really good start on Primavera but still have a long way to go.
What I hope to do is eventually be able to record myself playing each piece and upload it to my Facebook account. I am not setting a time limit on this challenge and I fully expect it to take me a number of years to complete. Oltremare (what I consider to be the hardest) is monster of a piece and is an eye watering 10+ minutes. To be able to play this piece under pressure without mistakes will be a big ask but I am willing to put the work in.
One of the most debilitating symptoms I experience on a daily basis is fatigue. It’s difficult for anyone who hasn’t experienced this type of fatigue to understand what it feels like. It isn’t like the feeling of just needing more sleep; it’s complete physical and mental exhaustion. The only other time in my life that I have experienced this type of fatigue was after giving birth following a 21 hour labour. There are times when I feel like I am walking through treacle and struggle to support my own head; making decisions become impossible. I do my best not to get in this state by pacing my activity as best I can.
Christine Miserandino has lupus and experiences chronic fatigue. She came up with a brilliant analogy called Spoon Theory to enable her friend to understand what her life with fatigue was like. Christine used a set of 12 spoons to represent the amount of energy she had to ‘spend’ on daily activities. She then assigned her daily activities a number of spoons e.g. getting dressed – 1 spoon, taking a shower -2 spoons and so on. Christine then explained that if she ran out of spoons she could either not do anything else that day or occasionally she could ‘borrow’ spoons from the next day. Either way the average of 12 spoons a day remained the same. During bad periods this average could be lower.
Currently I am in a bad period and running on 8 spoons. My spoon expenditure is as follows:
Getting up and dressed 1 spoon
Getting up, dressed and showered 3 spoons
Making breakfast/lunch 1 spoon
Taking care of the cats. 2 spoons
Going on a short 15 minute walk 3 spoons
Doing physiotherapy 3 spoons
Practising the piano 2 spoons
Looking after family. 4 spoons
Making phone calls/appointments 1 spoon
Going to local shop 2 spoons
Going out and being social. 4 spoons
Ideally I’d like to be able to do my walk, physiotherapy and piano practice everyday but at the moment that would be all I’d be able to do before crashing. I constantly have to make trade offs e.g on days I shower I don’t do my walk and I make sure I don’t have family duties. I don’t like letting people down so I always drop the activities that only I benefit from e.g. my piano practice and physiotherapy first before anything else. I struggle with being a burden on others and try to do my best to minimise this. There are times when I have to hold my hands up and say I can’t do anything right now because I’ve reached the stage I described at the beginning of this post.
Ironically one way to increase my spoon allowance quickly is to incorporate more exercise into my day. If I were to do my walk and physiotherapy every day without fail I would probably be running at 10-12 spoons at the end of the third or fourth week. In order to do this I’d have to be utterly selfish and not do anything else at all. Instead I am doing the best I can and hoping this bad period will be over soon.
I don’t mean to sound self pitying in this post. I’ve lived with this condition for 15 years now and it’s just the way my life is. I have lots to be thankful for not least a loving and supportive family and most of the time I am happy with my lot.
2022 has been a year of extremes for my poor brain. I began the year having finally achieved my target weight. It took a lot of time, effort and introspection to permanently change my eating habits and I wasn’t prepared for how it would feel to finally reach my goal. I was obviously very happy but I immediately started to feel anxious as I have never been able to maintain my weight before. I’ve always been losing or gaining depending on whether I was in a diet or binge phase. I was acutely aware that most people who lose weight eventually regain it and this was true of me in the past. I knew I never wanted to be overweight again. The way I have dealt with this isn’t particularly healthy. I now obsessively count calories and ensure that I am at least 200 calories below my maintenance allowance for 5 out of 7 days and eat at maintenance for the other two. This way I know there is no way I can gain any weight so I don’t have to weigh myself every day. I know this way of dealing with my weight anxiety is wrong and I have been seeing a therapist for the past couple of months trying to find a way through.
I have now fully recovered from my tummy tuck surgery and I am ecstatic about the results. I will be having a small revision on the left hand side of my horizontal scar on my tummy as it has healed and left a small fold. This will be done under local anaesthetic on November 7th. When everything is all healed I will post my final before and after photos.
The main reason for my stress this year is that I am having to face the possibility that a close family member may have dementia. I wasn’t sure at the beginning of the year but over the past 3 months there has been a definite deterioration in cognitive function. We are waiting for a brain scan which could take as long as 5 months so there is no chance of any diagnosis before then. It’s a horrible position to be in; it’s like being in limbo. I have no idea what the future holds so I can’t make any plans. If there is one thing that calms my stress it is having a plan of action.
With all these things going on in my life I have been struggling with my mood. I’ve just had a couple of really bad weeks with depression and feeling frustrated that I can’t self medicate with food anymore. I am starting to come out the other side of it now so I’m hopeful things will improve.
The healing process is progressing well though not without a couple of minor complications. My outer dressings came away at ten days post op and I was just left with some surgical tape. I thought that there was a large scab left at the bottom of my belly button but it seemed very much attached so I thought it best to leave it alone. Two days later I noticed a little discharge from my belly button so I made an appointment at my local doctors surgery to get it checked. It was found to mildly infected so I was prescribed a course of antibiotics to prevent it progressing into cellulitis.
Today I saw my surgeon again and he was amazed at how well I was moving around. He removed all of my surgical tape and everything has healed nicely. The belly button infection is well under control but what I thought was a scab has turned out to be an area of necrotic (dead) skin caused by inadequate blood supply. I knew there was a risk of this happening prior to my surgery and the area is not very big (about the size of my little finger nail) and it will heal on its own over the next month.
I have been told to moisturise my scars with E45 cream after showering and then cover them with micropore tape which, over time will help the scars to flatten.
I will see my surgeon again in 2 weeks so that’s it for now!
I am finally on the other side of my surgery and all went according to plan. I was due to be admitted at 12pm and ended being late due to the city centre being closed because of a car accident. It’s typical me to not be anxious about an impending major surgery but to have a near panic attack about being ten minutes late.
Once in my room I was told to immediately change into a gown as I was the only person on the list for the afternoon. I barely had time to change before my surgeon came in and marked me up with a sharpie! Literally thirty seconds later the anaesthetist came in and introduced herself. A mere twenty five minutes after admission I was being led down to theatre.
There was no anaesthetic room so I went straight into the theatre and led down on the operating table. Due to my scientific background in biology I was really interested in the different drugs being used for the anaesthetic and had this surreal experience of discussing all of this with the anaesthetist while being prepared for surgery. She gave me a shot of midazolam into the cannula which was rather pleasant. I don’t remember anything after that until I came round in recovery.
My first thought was annoyance that I couldn’t remember being given the actual anaesthetic. I then noticed that I couldn’t stop shivering. Due to most of my body being exposed for over 4 hours my core body temperature had dropped. I was under a heated blanket so I was soon back to normal. The pain from the surgery was there and could be felt as a burning, stinging sensation which got worse when I moved; it wasn’t unmanageable though. I went under at about 1pm and was back in my room by 7pm.
I spent the first night having to get up to use the bathroom every two hours as they’d pumped me full of fluids during the surgery. I hated having to alert the nurse every time I wanted to get up but I had to be disconnected from these mechanised pressure socks to help mitigate the risk of DVT. Moving around wasn’t as bad as I thought it was going to be pain-wise but negotiating going to the bathroom with four surgical drains and a compression garment wasn’t fun.
My surgeon came to check on me the next morning and instructed me to get up and walk as much as possible. I was able to have the drains removed from my arms that morning which just left the two in the abdomen. I did as I was told and got up every hour and walked up and down the corridor twice. To be honest I had quite a nice day, the nurses were lovely and the food was good. I’d been saving the production of the musical ‘Hamilton’ to watch until after my surgery and I’m so glad I did as it was wonderful.
The following morning I had my remaining two drains removed (a rather painful experience) and the nurse was amazed I didn’t make a fuss, all I was concerned about was getting them out! I was then discharged at 11am and home by lunchtime.
I have spent the last week taking it easy. The best think I ever did was buy the wedge cushion to raise my legs up; it has made getting comfortable so easy. I have been struggling with the compression garments. I really hate wearing anything tight and obviously by design these garments are extremely tight. They are also not designed for tall people and I’ve had to make a few adjustments to make them bearable.
So was it worth it? Undoubtedly yes!! I am amazed about how I look already despite the swelling. I still have the dressings on my abdomen but the change is stark. The dressings on my arms fell off this morning so the incision line can be seen; it looks a lot worse than it is. A lot of excess skin has been removed but it only weighed 4lbs.
Due to the swelling I won’t show a true weight on the scales for a couple of months and I’m trying not to get too obsessed. I’m sticking to my healthy eating so I know I’m not in any danger of gaining weight. I’m looking forward to getting back to normal and going on a shopping spree for some new clothes asap!
I’ve now had my pre-op appointment for my surgery. I had filled in a health questionnaire beforehand but still had to answer umpteen questions about my health. Some of them were really obscure e.g. had I ever had a CPE infection? I’d never heard of it but apparently it’s a nasty infection of the gut that has become resistant to many antibiotics and can be very serious.
Blood was taken for cross match purposes in case I need a transfusion and the usual blood pressure, height and weight checks (my BMI is a healthy 22.1!). I also had an ECG which appeared normal. I was relieved to be told that I don’t need to be completely hairless for the surgery which I was dreading. I was given a dry sponge which was impregnated with a special antibacterial agent which I need to use to wash my body on the day of the surgery. I’m schedule to be admitted at 12pm on May 31st for surgery in the afternoon. Due to COVID restrictions no one can accompany me or visit me while I’m an in-patient. I’m only staying 2 nights so it shouldn’t be too bad. I can FaceTime home and I have got a load of films and TV series stored on my laptop to make the time pass quickly.
Preparations at home have been ongoing over the past few weeks. I’ve invested in a new high quality v-pillow as back ache has been known to be a big issue due to not being able to stand up straight for a couple of weeks. This is caused by the strain on the incision where the skin has been pulled down. For the same reason I’ve also bought a wedge pillow to make it easier to keep my legs elevated this will also reduce the risks of deep vein thrombosis (DVTs). Clothes wise I’ve bought a couple of oversized jogging bottoms and a few button down nightshirts just in case I can’t raise my arms above my head for a while. I belong to a Facebook tummy tuck group and apparently ‘surgery nesting’ is a thing. Compared to a lot of people I think I’ve been quite restrained.
I’ve taken some more before photos as I’ve lost a bit more weight since the last one was taken and it will be good to compare them post surgery.
I had my initial consultation with my chosen cosmetic surgeon on February 14th about having the loose skin on my stomach and arms removed. Having done a great deal of research, there weren’t any major surprises.
After the usual medical history questions he gave me a very thorough examination. I have a lot of excess skin not only on my abdomen but also my back. While I could have a total body lift it would be a more major surgery with a longer recovery time. I think if I was younger I’d have seriously considered this route but I think it will be enough to just have the skin removed on my stomach. He recommended that I have the fleur-de-lys abdominoplasty with muscle repair as I need to reduce the amount of skin both vertically and horizontally. I will probably still have a little excess skin at the top but that is unavoidable. I have also lost a lot of skin elasticity so there is a chance I may still have a little fold at the bottom. When examining my arms he again said I’d lost skin elasticity and may still have a slight sag after surgery but to be honest a slight sag will be much preferable to the 3-4 inches of skin I have at the moment.
My surgeon said that he was prepared to do both procedures at the same time and that the operating time would be 4.5 hours. I will need to stay in 2 nights and I will have 4 drains which will be removed before I go home. I will need to wear compression garments for about 2 months to aid healing. I’ve bought the recommended garments and they are seriously uncomfortable but I just have to ‘suck it up’ as they say.
I’d made the decision to go ahead with the surgery before the consultation so when the quote came through a week later I booked the surgery for May 31st 2022. I was hoping it would be sooner as I’m mentally prepared now but the delay means that I can get the house spring cleaned beforehand.
Recovery time varies from person to person, most are able to resume normal activities by 6 weeks but as I have fibromyalgia and I’m having muscle repair it could be longer. I’m determined to get back to normal as soon as possible and start living my new life.
I finally reached my target weight on the 17th December 2021 and I am managing to keep it there but I am not finding it easy. Once I started eating a bit more my hunger levels increased and so did my cravings for junk food. I’ve literally been fighting every minute of every day not to overeat.
I have written at length about my relationship with food during my childhood. I used food as a comfort and I associated it with happy family times. I’ve realised recently that at some point during my adolescence I became obsessed with sweet refined carbohydrates i.e. chocolate, cake and biscuits. As soon as I was given an allowance I was able to indulge in these foods as much as I liked. This led to me alternating between overeating and panicked dieting when I gained weight. I was able to keep my weight at around 13 stone (182lbs) during this time. When I developed clinical depression my eating deteriorated and I rapidly became morbidly obese.
Having done some research I now realise that I show a many of the symptoms of food addiction and binge eating disorder. These conditions are characterised by the urge to consume large amounts of highly palatable foods i.e those containing sugar, fat and salt. These foods trigger the pleasure centres in the brain and cause the release of dopamine; the happy hormone. From my own experience this really makes a lot of sense. I used to get a rush even planning a binge. The feeling of pleasure following a binge was very short lived as feelings of guilt and shame rapidly ensued.
Understanding the chemical mechanism of my urge to binge is making it easier for me control it. I did have a minor binge two weeks ago (my first in 7 months) and it made me feel sick. I didn’t even get the same pleasure response. Initially I was annoyed that it didn’t make me happy and then I realised that this was a good thing. If I can remember this experience in future weak moments I might stand a chance at a long term recovery. I will never stop trying as I love the way my body feels now at a healthy weight.
As I have been at a healthy weight (BMI below 25) since December 2020 I now qualify for skin removal surgery and I will be seeing my chosen surgeon next week. I think getting the surgery is the right decision for me and with my new understanding of my eating habits, I think I am less likely to regain the weight. I know I will never be able to eat whatever I want but now I’m aiming to maintain my weight I can have the occasional treat. I just need to make sure these treats don’t trigger me to binge; apart from the one slip I’ve been doing ok.
I’m planning on blogging my surgery experience from consultation to post-op check up. I think it’s more appropriate to do it here than on Facebook as some of my friends may not wish to see photos of my post surgery stomach!
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.