Autism, Depression, Fibromyalgia, Music, Piano, Weight

Getting Through the Tough Times…….

louiseissy

To say this year has been a crap fest so far would be an understatement. It started positively with coming through my surgery successfully. In February several things happened at once that resulted in me having a nervous breakdown. A week after this happened I had a dissociative fugue episode in response to extreme stress which really scared me. I had to make some tough decisions. One of these was to increase my antidepressants again. They are not back to the level they were before I decreased them last year so I still feel good about that. I also had a temporary increase in my antipsychotic medication just to get me through the first month following the breakdown. I also took measures to remove myself from any situations that caused me stress that weren’t essential to my life.

Initially I tried to gain some control back by restricting my eating. I reached the point where I was feeling faint from lack of food. I realised that I was in real danger of developing a full blown eating disorder. To avoid this happening I made the hard decision to let my membership of Slimming World lapse. I’ve been a member since August 2017 and I have a lot of friends there. I’ve also put the scales away as I was obsessively weighing and stressing over every little gain. I’m now just going to go by how my clothes feel. Since making this decision I may have put on a few pounds but I think everyone close to me would agree that I needed to.

The breakdown also caused me to go into a flare up of my fibromyalgia. This has been difficult to deal with as the only thing that helps is graded exercise. I went to hydrotherapy once a week but this wasn’t enough. I just didn’t have the mental strength to get started. It’s taken me 8 weeks to get back to swimming and it’s going to be another few weeks before I feel any benefit in terms of pain relief.

In the past, music has played a huge role in my mental wellbeing. It was just by chance that I discovered that there was a current UK tour of Jesus Christ Superstar. I managed to get a ticket for a show locally a few weeks after my breakdown. When I checked the cast I realised that the person playing Jesus was the actor I saw in We Will Rock You last summer; Ian McIntosh. He was really good in his role as Galileo so I was looking forward to seeing him again. Ian was amazing last summer but was on a whole other level in JCS. When I go to the theatre I usually find that there are one or two stand out performances but in this production the whole cast were superb. I think seeing this show was the start of my recovery.

This is where my autism kicks in. I booked immediately to go again in a not so local location. This time I took my elder daughter with me. It was a lovely day out and I enjoyed it just as much a second time and saw all sorts of things I missed the first time. I think you can see where this is going. I’ve booked for another 2 shows, one in May and the last one in August. I posted on Facebook about this current ‘special interest’ in the JCS group and started talking to one lady who has been to see it 7 times already but her reason for this is that her son is in the ensemble cast. I mentioned about not having the courage to try and meet some of the cast at the stage door but she reassured me that they are all really friendly so I might try it. I’d just really like to thank them for getting me through this crap year. I’ll probably chicken out though when the time comes.

This week is the first week where I actually feel like I’m almost back to normal. My enthusiasm for life seems to have returned. I’ve been swimming and I’ve practised the piano every day. Music really helps and I’m considering taking up the flute again. I looked into getting the flute from my school days overhauled but was told it would cost more to overhaul it than it’s worth. Apparently flute technology has moved on in the last 30 years so it would be better to spend the money buying a new one. It will take me a while to save up my fun money (I’ve spent most of it on theatre tickets and train travel!) so I will spend that time practising on my old flute and see if this is just a passing phase or a serious thing that I want to pursue.

This year has been tough and once again my neurodivergent brain has been responsible for many of the challenges I’ve faced. I’ve been very lucky to have had the support of my amazing family and friends and I can now look forward to the rest of the year with happiness in my heart.

Depression

Time To Kick Myself Up the Butt……..

louiseissy

For the first time in years I have got myself into a depressive rut. I was barely coping before my surgery but since the surgery things are getting desperate. I have made an appointment with my doctor to discuss whether I should return to my previous dosage of medication. I really don’t want to admit defeat but I am barely functioning.

For the past two days I have tried (unsuccessfully I might add) to make myself do what I need to do. I need to get moving again, even it’s only a 10 minute walk and I need to resume my piano practice. I know that both of these activities will make me feel better but I haven’t succeeded in doing either of these. Instead I’ve resorted to old habits and stress ate my way through half a packet of biscuits this afternoon. I am so cross at myself for being like this. I thought I was better than this.

I have a particularly stressful conversation coming up this weekend with a family member and I feel sick even thinking about it. I am not good with verbal communication so my husband is going to help me. If I could just write it I’d be fine but it’s not an option here.

I just want to feel normal again. I’m hoping when the aforementioned conversation is over I will be able to force myself into action. I’ve done it before but I’m not sure if I’m strong enough at the moment to do it again. I’ve got until Thursday before I speak to the doctor so if I’ve made enough progress I may not have to increase my meds.

My mental health problems have always been a exacerbated by my low self esteem and self worth and having to increase my meds will make me feel like a failure. I just feel like I’m in a lose-lose situation.

I was so certain my low mood was down to the lack of diet coke; it turns out I was wrong. I guess I will just have to take it one day at a time and try to do my best. The days are getting longer now so hopefully that will help. I know I will get there in the end I just hope it doesn’t take too long.

Depression, Fibromyalgia

Switching My Brain Back On……..

louiseissy

I had my gastric surgery six days ago and everything went well. I was warned beforehand that they may not be able to do the full procedure (removal of gastric band, hernia repair and fundoplication) due to scar tissue. Fortunately in a 4 ½ hour procedure everything was achieved so I don’t need to worry about another surgery later in the year. I have had minimal pain from the surgery site and I am able to eat semi solid food already without difficulty.

I will admit freely that I am addicted to diet coke. As far as I’m concerned I don’t smoke, drink alcohol and I don’t indulge myself with food. If I want to drink diet coke I will drink diet coke and I don’t care if it’s unhealthy, it gets me through the day. Before surgery I was told that I wouldn’t be able to have any carbonated drinks for six weeks as the build up of gas in the stomach could cause the stitches to rupture. This is because many people can’t burp following fundoplication. However in my case I was able to do this immediately. I thought I was doing ok. I craved it but I didn’t think I had any problems going without it. I was expecting a headache from the caffeine withdrawal but there was nothing.

The day after I came home from hospital I noticed that I was feeling extremely low. I couldn’t concentrate or feel any enthusiasm about anything. I couldn’t think clearly either and was starting to worry I was heading for a major depressive episode. I know it’s normal to feel low after surgery but this felt out of all proportion from my previous experiences. I did some research and discovered that everything I was feeling could be the result of caffeine withdrawal. I considered replacing the diet coke with coffee or tea but I just can’t stomach them at the moment. I made the decision to try semi flat diet coke. I took it incredibly slowly and had absolutely zero averse effects; no pain and no gas bloat. Within an hour it was like my brain had partially switched back on. I could think again.

Part of me is alarmed that I am so dependent on diet coke and wonder if I should try and come off it. The other part of me is saying that there are worse things that I could be addicted to. I know all about the controversy of the artificial sweetener aspartame and it’s possible link to cancer. If I can come off opiates I know I can come off the caffeine but until it becomes medically necessary (e.g. if I develop atrial fibrillation like my mother) I think I will continue to enjoy my chosen drink.

I can now look forward to the rest of 2024 with the hope of being free from the acid reflux. My sleep will no longer be interrupted and this is will have a positive effect on my overall health. Hopefully I can get my fibromyalgia back under control and build up my exercise again. 2024 will be a good year.

Depression, Weight

A New Year; Another Surgery……..

louiseissy

2024 has arrived and I was initially underwhelmed. In December I had to be referred back to my gastroenterologist due to severe acid reflux. Despite maximum doses of PPIs and H2 blockers it was still intolerable. It was decided that I needed a redo of my hiatus hernia repair and fundoplication (a procedure where they wrap the upper portion of the stomach around the oespophagus). To allow this to be done they will have to remove the defunct gastric band that has never worked anyway. Our medical insurance took one look and this and decided that because it involved the gastric band they wouldn’t cover the expenses for me to have it done privately. If they had I would have had surgery on December 6th 2023. I therefore had to be referred to the NHS here in the UK.

When I received the letter asking me to call the hospital to arrange an appointment to see the same surgeon I was told that there was a waiting time of 70 weeks! I tried to explain that I had already seen the surgeon who had already said that I needed surgery and could I just be placed on the waiting list for the surgery I was told that I would have to see the surgeon again. To me this seemed a waste of an appointment not to mention time when I could be on the waiting list for surgery.

January is always a bad time for my mental health and this situation had me in despair. I thought I was facing over two years of worrying about bending over and regurgitating the last thing that I’d eaten or drunk; it really is that severe. Having spent over 10k on my skin removal surgery I just couldn’t put my family in debt to pay for the surgery privately. Then on January 5th I had a phone call from the hospital telling me they had a date for my surgery; January 30th! I just couldn’t believe it. My surgeon took one look at my referral and decided that my surgery was urgent enough to expedite it. To say I am relieved would be an understatement. I can now look forward to this year with hope that I will finally get well. If successful I will be able to drop two of my medications. Ever since coming off my painkillers I have been loathe to take any medication that isn’t strictly necessary. The only time I have taken opioid painkillers since 2019 is when I’ve had surgery and then only in the first 24 hours.

As with any surgery there are risks and as this a “redo” operation these are significant. The main one is that if there is a perforation of the oesophagus I could face months of healing and possible tube feeding. My surgeon is one of the best there is and I am hopeful that this will not happen. I do have an irrational fear of tube feeding but not for the reason a normal person would have. I don’t worry about having a tube up my nose and not being able to eat normally. I worry about being overfed and putting on weight. I don’t know if I can say that I only consent to a certain number of calories. I know my maintenance daily calorie intake is only 1500 calories but the average women needs 2000 calories. If they give me this much I will put on weight. Deep down I know I’m being stupid and as my elder daughter said, ‘Mum if you need a nasogastric tube your weight should be the least of your worries!’, that put me firmly in my place!

If all goes well I will be on a liquid diet for a couple of weeks and then over another month I will gradually build up to a normal diet, starting with pureed food and then mashed food. I have always loved Farley’s Rusks with hot milk so these will feature heavily in my diet for a while. It’s exactly the same procedure as when I had the gastric band operation in 2007.

Hopefully by March I will be fighting fit and ready for everything this year has to offer.

Uncategorized

Long Time No Post……..

louiseissy

It’s been several months since I last posted and the longer I left it the harder it was to think of something to post about. I considered a post on the music of Hiroyuki Sawano but found it difficult to write without sounding like a complete and utter fangirl. I may try again at a later date.

I’ve decided to go back to the beginning and review the many ways my brain doesn’t work like it should and how it affects me now.

Depression and Anxiety

Back in March I chose to reduce my antidepressant medication by half to enable me to start feeling more emotion i.e less numb. I have managed to keep at this lower dose but have had some issues with low mood. It’s not anywhere near as bad as it used to be but it is enough to affect my life. I have slipped with my exercise and I really need to pull it back. It’s just so easy to lock myself away at home and watch endless YouTube videos when I’m struggling. It really is a vicious circle because I then feel bad about not being productive. There are times when I find if that I can force myself to do something and I can get myself out of my lows. It is for this reason that I am going persevere with the lower dose of medication as it is really nice to be able to feel more joy in my life.

Fibromyalgia and ME

I continue to have chronic pain from the fibromyalgia and fatigue from the ME but I have finally learned to pace my activity. I have noticed that my pain gets a lot worse when my sleep is disturbed or if I only sleep lightly. I have started to take melatonin at night and it works remarkably well for me. It’s not available on prescription in the UK for adults but is obtainable online. I’ve checked with my doctor and it is safe to take. The only reason it’s not available prescription in the UK is because it’s efficacy hasn’t been proven.

Autism

Being diagnosed with autism is easily one of the most positive things to happen to me in my life. My low self esteem and self worth disappeared overnight when I realised my ‘inadequacies’ were something that had a cause. My struggle with verbal communication is something that is ongoing and I find myself constantly rehearsing conversations in my head, especially at night. I prefer to write than talk – obviously since I am writing this blog. Problems arise when I have an impatient listener who instead of accepting that I have this deficit immediately call me out on something that I’ve said wrong. I find this incredibly upsetting especially when I’ve tried to explain my autism and it gets dismissed.

As a family comprised totally of autistic individuals we have worked together and are totally accepting of each others traits and needs. Our home is autistic friendly and we just don’t care what other people think about what we do e.g. we may sometimes eat the same meals every day of the week for months on end. We’re comfortable with who we are.

I’ve also realised that the 3 friendships I’ve maintained outside of my family are with autistic people. We understand each other and I feel comfortable around them. I feel is no need for prove myself to them.

Weight

I reached my goal weight back in December 2021 and I have been maintaining now for nearly two years. It’s a constant battle and I will admit to being a bit obsessive about it. I continually count calories and count a day a success if I’m in a calorie deficit. I do have a day or two a week when I let myself have a treat and I think the lighter days balance these out as my weight is fairly stable.

So there it is; a round up of my life right now. It’s nearly Christmas and 2024 is just around the corner. I do face some major surgery in the new year but once done I should be set for a healthy and prosperous year.

Autism, Depression

Changing my Brain Chemistry……..

louiseissy

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

louiseissy

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……..

louiseissy

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.

Click to access BYDLS-TheSpoonTheory.pdf

Depression, Tummy Tuck, Weight

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

louiseissy

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……..

louiseissy

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!