Autism, Depression

Changing my Brain Chemistry……..

Having completed 6 months of talking therapy I felt that I’d made sufficient progress that I could try and reduce my antidepressant dosage. I’ve been on antidepressants pretty much continuously since I was 16 (the only breaks were during pregnancy). I’ve long accepted that I will need to take medication for the rest of my life. I switched to my current medication of duloxetine back in late 2017. Initially I was put on 60mg a day and this worked well for about a year. In early 2019 I had to increase the dose to the maximum of 120mg a day due to the stress of life. Although this eased the symptoms of my depression it made my emotional range very narrow. Despite feeling most emotions none of these were very intense e.g. I was moved by my daughter writing me a poem for my birthday but I didn’t tear up like I thought I should.

Two weeks ago I started the process of reducing my dose of duloxetine back down to 60mg. I did one week of 90mg and then reduced it the final dose of 60mg. It took about a week for me to feel the difference and the first sign was that I got extremely peed off with my husband when he was complaining about a video I was watching on YouTube (I realised 20 minutes later and apologised!). 

I am now coping with the effect of less serotonin in my brain. My mental state feels a little unstable and my mood can change rapidly. It took a while but I recognise that this feeling is completely normal and it is what it’s like for most people that are not numbed by antidepressants. I’m learning to cope with feeling more. The therapy has really helped me cope with my current life situation, I recognise that I have limits in what I can do daily and that it doesn’t make me a bad person if I make time for myself. 

As well as the negative emotions I have also been able to feel more happiness. I reread my daughter’s poem and teared up even though it was about the fiftieth time I’d read it. I have also noticed that I get more enjoyment from my autistic special interests/fixations. I am able to get a thrill of achievement when I finally play ‘that section’ of a piano piece without a mistake. I have also become completely obsessed with the anime series ‘Attack on Titan’. I’ve mentioned this series before and if I let myself I could write an essay on how I feel about it. From the writing and the character development to the soundtrack it is truly a masterpiece. For the first time I’m even indulging in cosplay! I’m very aware that autistic people can talk for hours about their special interests and bore the pants off neurotypicals so I came up with a cunning plan. When I’m out I wear a very recognisable artefact from the series (a key) that any fan would recognise. If they then mention the series I know it’s ok for me to talk about it. I feel I must mention here that if anyone reading this decides to watch ‘Attack on Titan’, it is very definitely not suitable for children. 

I think on the whole I am better on the lower dose of duloxetine. It is still early days and I know that there are trying times ahead but I have amazing support in my family and I know I can do this!

Autism, Music, Piano

The Einaudi Challenge

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)

  • Primavera
  • Indaco
  • Una Mattina

Group 2 (Intermediate)

  • Nefeli
  • Le Onde
  • I Giorni
  • Nuvole Bianche

Group 3 (Advanced)

  • Divenire
  • Nightbook
  • Oltremare

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.

Ludovico Einaudi
Fibromyalgia

Spoon Theory……..

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.

Depression, Tummy Tuck, Weight

Going through the dark times and coming out the other side……..

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.

Tummy Tuck

2 Week Post Op Check Up – a brief update……..

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!

Tummy Tuck

Surgery and First Week Post Op……..

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!

Tummy Tuck

Pre-op Appointment and Preparation……..

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.

Tummy Tuck

Initial Consultation……..

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.

Fleur-de-lys Abdominoplasty showing area of skin removed.

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.

Compression Garments

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.

Weight

Food Addiction Recovery

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!

Food Addiction Infomation.

Weight

Future Plans……..

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!