A Spoonful of Energy Please?

The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are a tangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished – Wikipedia

spoon-theory

Tonight I’m going to discuss the term ‘spoons’ in Autism and how it affects me. I wasn’t aware of such term to describe energy consumption until a few years ago but it’s been very helpful since. I’ve finally been able to refer to the theory of spoons when explaining to people my reasons for feeling exhausted after completing minuscule tasks. I’ve noticed that Autistic people tire easily because so many of our actions are attained with mental energy as well as physical exertion, making the spoons theory for us, very easy to associate with.

When I was younger I had heaps of energy. I loved keeping fit, going out clubbing and hanging out with my friends, although it did tire me out and made the next day almost impossible to cope with, but I was able to achieve more. I can’t say the same for today. It seems with age I’m finding it extremely hard to push myself into doing the simple things others wouldn’t even spare a thought for.

Since being in a relationship with someone who is constantly on the go it’s become blatantly obvious I lack the drive and energy of a healthy person. I almost felt guilty in the early stages of our relationship. I would force myself to attend concerts, dine at restaurants and socialise with his friends and family (who I love) but would suffer and recuperate for days after. Luckily, he understands (after explaining the spoon theory) and goes out of his way to make sure I’m not using too many spoons.

So, for me at the moment with my depressive state, I have 10 spoons per day. The hardest spoon for me to use and probably always has been, is showering/brushing teeth first thing in the mornings. I’m an insomniac anyway so struggle to find any motivation to wake up in the first place. I’ve always found the idea of washing a chore, I’ve no idea why but it really feels like an obstruction I constantly have to fight just to take on my day. I use 2 spoons on my daily walk with my foster dog. I choose quiet rural locations purposely to avoid people which adds more spoons. It takes 3 spoons to prepare meals. I love cooking but do find it tiresome. Socialising on the phone with my mum and seeing my friends uses 1 spoon as I find it easy/relaxing to be in their company. The rest of my spoons are usually spent on being around people (crowded places etc.) and tidying up etc.

I guess you’re now wondering how I use spoons when doing certain activities or travelling? Well, Will helps out on those days by cooking our meals, walking the dog and tidying up. I don’t know what I’d do without him. He’s been amazing.

There are times when I use more spoons than permitted a day. On the odd occasion of this happening I tend to sleep for hours more the next day and avoid doing anything that exerts energy. This can go on for days depending on how many spoons went over. It’s not just tiredness that’s affected, I become very moody and hungry which can result in overeating to ‘sooth’ the crappy feelings that come with it.

Recently I’ve felt so deflated realising my lack of energy is preventing me from achieving so much in life. I often have days when I feel an increase and have several ideas that can change my life and make me happier but the next day I’m lethargic and the thought alone uses a damn spoon!

I hope this post has raised a little awareness. I’m not great at this sort of thing at the moment with a cluttered mind but if it can help some understand that just because some of us can’t give ourselves to something doesn’t mean we’re unworthy of it, we just haven’t got the energy to accomplish it at the time. I’ve been beating myself up for too long knowing I have the potential to achieve in life and feel proud of myself but lack the energy to do so. I’m sure in time I’ll tidy the mess in my brain and things will fall into place.

 


 

Useful spoon theory links:

www.theodysseyonline.com/understanding-spoon-theory

https://en.wikipedia.org/wiki/Spoon_theory

Journal Entry – 01/03/2017

 

This past week has been a horrendous one. My hormones were all over the place, I’ve had a migraine for a week and I’m having to deal with the constant dread of my foster dog potentially leaving on the weekend! I haven’t even managed to think a positive thought. Tonight I feel a little wobbly. I keep trying to distract my thoughts from my foster leaving me but find myself getting anxious. I hate people seeing me cry and I know I’ll be a blubbering mess.

The migraine situation has been driving me near suicidal. It’s no joke. The pain can be excruciating and more often than not I can’t think of anything more soothing than knocking myself out until it’s over with. Anyway, my GP prescribed me some new meds to try which I put off for a week (I hate relying on meds) and had to admit defeat and take the pills. I’m three days in and haven’t had a migraine so my fingers and toes are firmly crossed!

To make matters worse, we’ve had some roofers and builders in to fit our new roof. To be honest they’re sound guys but I hate having people here. I can’t settle, my life’s quite literally put on hold until they’ve completed the job and moved on. All I want to do is relax and have some peace and quiet but I panic and end up making them sausage sandwiches!

Moving on, I spoke with my therapist on Monday and she’s decided that I take a three month break. I need to get my migraines under control and gain some balance with my behavioural activation, which in all honesty, hasn’t been great since losing my gran. I actually felt relieved that it was coming to an end. I was finding myself becoming anxious before sessions and there wasn’t much light on my part. I was on my 16th session and still felt the reasons for my depression hadn’t been approached, although my mood had improved, it was obvious the darkness would still find it’s way back into my life without closure on my past.

I really need to try my hardest to get myself back on the stable track and maintain ‘life’. I know what I have to do it’s just a matter of picking myself up and out of the comforts and pushing myself into tasks that I’d usually avoid. I’m still planning my sponsored walk and have bought two cameras to get myself out of the house and experiment more with the hobby I enjoy.

Life really is a labyrinth which I was once lost in but I’ll stay believing that it’s the mystery that keeps it exciting.


If you have a few moments please swing by sweetandsawah ‘s blog. Such a lovely woman who inspires me with her ambitious mentality. Love & Hugs.

 

Growing Up With Biracial Parents

 

ec6fafc3527b35acbb7e13852c33af9e

 

Today I want to tell you about my life growing up with a Filipino mother and an English father. I read an article earlier this afternoon about biracial parents and what the children could experience growing up. It brought back a lot of memories as I was able to relate to many of the issues listed.

My mother is very beautiful. She’s one of the most warmest and genuine people I’ve ever had the pleasure of knowing. It hurts me to see her greet strangers when walking down the street to see them give her a blank stare yet she doesn’t care. She doesn’t greet people for gratitude or validation, she’s a good person, and does so with genuine intention of warm greetings.

My father was an attractive man before he was run down with depression and became sleep deprived. When my mother married him (26 years ago) they were an attractive couple together, although he’s covered in tattoos and in the Filipino culture a man with tattoos has likely served a prison sentence. My mother saw through that and fell in love with my father and they’re still happily married to this very day.

My mother started working in the U.K as soon as she moved here. She has never once claimed any benefits even though she could qualify for them as she worked less than 16 hours. My father has worked all of his life too until recently. He had a stroke in 2008 which affected his work ability a few years ago resulting in early retirement.

From what I remember I had a comfortable life when I was young. We were far from rich but my father was self employed and doing well at the time. He used to spoil me when I was younger. He’d surprise me with a puppy or a new bike and made sure I was the happiest girl on Christmas Day. My mother was also a generous person surprising me  little sentimental gifts and always put me first.

My mother is the greatest mother of all time. She has been my biggest support network through my depression and Asperger’s Syndrome. She attended all my appointments and helped in any way she could to make my life easier. I remember only ever being babysat twice in my life, she never left my side and took me everywhere if needed. She always made sure I was fed, clothed and happy, and that I was.

My father and I have a different bond. We used to be very close when I was young and less hormonal. When I hit adolescence and had to face secondary school I completely changed from the quiet shy girl to the loud, aggressive opinionated teenager. He didn’t seem to handle my sudden bursts of anger and irritation at the slightest thing. I wasn’t diagnosed with autism until the age of 22 so now I understand why he struggled with me without knowing the hell I was going through.

So there’s a little history for you, now I’ll talk about other people’s opinions on my parents’ marriage.

In all honestly I didn’t even realise the difference in race. Mum was mum and dad was dad. It was that simple. Yet other people would stare and have their own ideas about my parents’ relationship. I remember a friend of mine once spoke about my parents (not to my face obviously) discussing my innocent mother. She seemed to believe my mother was a prostitute (purely based on the fact she’s Asian). I can’t even comment on that because I’ve never heard anything so absurd. Considering mother’s a catholic I found it very disrespectful and coming from the person herself, found it quite ironic.

My own friends would discuss my race. They believed I should of ‘acted’ more ‘English’ and pay more attention to my father’s side of the family. I found it hilarious that a human could actually sit there and discuss my ethnic origin and care that much about my personal life. I on the other hand lived a life never giving a thought to the fact I was mixed race, I was just being myself and that caused my friends to feel angry. I had my own issues that I never once discussed with my friends so I found the whole conversation (that was also said behind my back) amusing.

I personally was targeted racially from a young age. I had one young boy comment on my mother’s mole and the colour of her skin. I vividly remember several people taunting me with racist words. It disgusts me that children were even aware of such horrific words. Luckily my father taught me self defense from a young age as he practiced jiu jitsu. I now know that he was protecting me from the expected racial abuse.

Within the last 4 years I’ve discovered racism really does exist (yes, I was oblivious of my light brown skin for many years as colour doesn’t define anyone). I have had men tut at me when I hold hands with my partner (because he’s Caucasian). I’ve been on the receiving end of dirty looks and have even been lucky enough to receive racist verbal diarrhoea from a ‘friend’ of mine but what hurts the most is coming to the realisation that racism seems to apply almost everywhere. Now I say that lightly, not to be taken too seriously but yes, I hear it in the disgusting derogatory words to describe someone of race and the  nasty looks from those less educated.

It’s a shame. I remember living a peaceful life along with a stressful one. I wasn’t bothered by people and if anything didn’t pay a thought to those around me. I was happy in my little bubble unaware of the darkness that was awaiting me in time to come. I used to feel anger and resentment towards racists but now I try to understand that it’s due to being uneducated and the way people can be brought up.

I am very proud of my parents for standing by each other and teaching me to understand the value of money, life and love. They’re like any normal couple and shouldn’t be judged because they fell in love no matter where they come from. We live in an accepting modern age where people should embrace life and not stress or worry over a biracial couple.

I’m happy to be taught valuable life lessons from different cultures and be able to see life with an open mind. My parents never smothered me and never once tried to fix potential mistakes. They spoke openly about every topic under the sun which has now given me a broad mind full of imagination and a tough exterior that can handle any abuse aimed at me. I’m so proud of them and they should be proud of themselves. So it’s silly to judge anyone on their differences. There’s so much more to life than the colour of someone’s skin or their gender or sexuality. Life can be simple if you let it be. Learn to accept with kindness and free your body of hate, it can kill you 🙂

 

Love conquers all…

There’s Nothing Better or Worse

There’s nothing better than feeling superior because you feel different from any other person on the planet yet there’s nothing worse than feeling alienated because you can’t relate to these people.

There’s nothing better than waking up and making no effort with your hair and make up. Throwing on the loose fitted clothing to feel comfortable and free yet there’s nothing worse than feeling center of attention of the questioning eyes for dressing in such way.

There’s nothing better than having a creative mind and dreaming of many ways you could become successful yet there’s nothing worse than failing to organise your thoughts neatly to put these ideas in motion.

There’s nothing better than craving a love so deeply and being lucky enough to experience it yet there’s nothing worse than discovering love isn’t always what you imagined it would be and there’s going to be some fight to refresh the spark.

 


 

Lately I’ve noticed my mind’s been ticking over and over the hundreds of possibilities only to feel deflated moments or days later. I seem to find myself in the same position day after day because each positive thought is quickly pushed to the back of my mind with that nasty negativity.

I’m starting to wonder if I’ve ever led a happy life. Depression has completely taken over for so long it feels almost normal for me to lead such an unstable life. I often wonder if everyone else is ever really completely happy? Is there such thing? I’m losing all hope in myself and really struggle with this so called light at the end of the tunnel.

I believe that life can be pretty simple. Lead a life with good intentions and appreciate the goodness you receive, lead a life with bad intentions and expect the negative energy you could receive. I’m left wondering why I can’t seem to iron out the messy pattern of thought in my mind and picture everything clearly and easily so I can achieve something and feel human for once?

Sensory Hiding and Seeking

Living with Asperger’s Syndrome can be extremely stressful at times, it’s not just socialising that affects us. There are many obstacles that can crop up at any time of the day/week unexpectedly causing instantaneous meltdowns/shutdowns.

Sensory overload is a term I often hear when discussing Autism. After doing a little research I realised that it had affected me personally and my whole life consisted of sensory disturbances that caused absolute misery. I noted how my migraines would appear when exposed to certain lights, the materials I couldn’t tolerate on my skin and how sounds could send me into full blown anxiety attack (worst case).

With each problem there are different circumstances. The worst being a full blown anxiety attack or meltdown and the least feeling irritable. If I come across a sensation I dislike I tend to feel uncomfortable or intense rage. I tend to avoid fireworks and balloons which petrify me but some just can’t be avoided unfortunately.

Now that I’m aware of these issues and how much of an impact they can have on my life, I’ve found ways to avoid sensory overload by wearing earplugs when I sleep and in general if finding ears more sensitive than normal; standing right at the back or corner of a concert; wearing sunglasses at all times when it’s bright outside/driving in the sun and have quiet breaks when in crowded places.

I have made a list of likes and dislikes below and would love to know what affects your senses most?

Likes

Visual

  • Christmas lights, dim lamps, lit candles, the natural moon light, city lights from afar and watching videos of people knead slime.

Sounds

  • Rainfall, quieter storms, crickets at night, pram tyres rolling over a pavement, music (when in the mood) and silence.

Touch

  • Squidgy objects, fresh bed sheets on my bare feet and legs, body massage especially when focused on my head, skin being stroked/rubbed, swimming in water, steering wheels and long soft hair.

Smells

  • Cakes in the oven, certain scented candles, floral perfumes, clothes fresh from the tumble dryer, that wet pavement smell (petrichor) and bonfires.

Taste

  • Foods: snacks that ‘crunch’ and need biting into, soft chewy sweets, cold ice cream and chewing gum.
  • Flavours: vanilla, coconut, peanut butter and anything spicy but tasty and sweet but not too sugary.

 

Dislikes

Visual

  • Car headlights, jumpy lights, flashing lights, flickering lights, bright lights and natural sunlight.
  • Crowded places (processing moving people), flashing images on a TV screen, neon coloured objects and fixing on moving objects.

Sounds

  • Certain songs, dogs barking, heavy traffic (sleep with windows open), car horns, loud conversations close by, footsteps behind me as I walk, power drills and hammers.
  • High pitched noises: sirens, babies crying, screeching of tyres and alarms.
  • Low pitched noises: continuous barely noticeable noises and plane in flight.
  • Sharp noises: fireworks, gunfire and balloons popping – my worst nightmare!

Touch

  • Denim, silk, satin, warm materials, tight clothing and jewellery (rarely worn).
  • Anything wet/damp touching my skin (other than bathing and swimming), handling raw meat, very cold objects, hair being brushed, mud, walking barefoot and contact with public toilets (seats and floor).

Smells

  • Strong perfume, lavender, dandelions, bleach and any lingering scent.

Taste

  • Foods: slimy textures, ridiculously chewy food and certain lumpy foods.
  • Flavours: anything bland, fishy and extreme spices.

Shutting Down For The Week

original

Sorry I haven’t posted in a while but I have good reason. Last week I went into shutdown mode. My mood dropped, I felt tired every second of the day, I couldn’t concentrate on anything and couldn’t connect with people. In these phases I distance myself from socialising online and in person. I let down a friend I was supposed to meet with because I had no energy what so ever to talk. Yet the week before I was at an incredible high.

The week before…

I felt better than I had felt in years. I took on board everything my therapist K had taught me. My anger was barely making an appearance and replacing it was a soothing calmness. Now, I’ve never been a relaxed person, ever. I always had a very short fuse and every little thing would irritate me, more so than others. So I obviously became aware of the change in myself. Other than mentally healing I was pushing myself to the limit. Starting new paintings, looking into piano lessons and thinking ahead for my future.

On the Monday I went to see my therapist. It was 7 weeks since I last session and I was so excited to tell her all about everything I had accomplished. She was very proud of my achievements but I had felt very exhausted all of a sudden like it was a build up of all things good that I had released and there was nothing left. At the end of our session K had set me more homework than usual consisting of socialising with friends, attending my piano lesson and looking up fitness classes to discuss in next session. I left feeling really run down and empty.

The week didn’t get off to a great start. I didn’t attend my piano lesson. The drive would’ve taken too long (well, that was my excuse anyway) and decided to look for a teacher closer to avoid this from happening again. I didn’t socialise with my friend. She text me a few times but I kept apologising and rearranging and I didn’t look up fitness classes. It was all too much. I knew K had put so much hope in me succeeding but I had no will for it. I stayed in bed late each day, only rising to make food and read. My drive had completely gone out of the window and my motivation was nowhere to be seen. The washing up was piling up and became more of a chore. I felt like a failure.

This week…

I arrived at therapy carrying my mood with me. I didn’t want to go. I was so ashamed that I had failed at my set tasks. I was led in bed that morning thinking of all the possible excuses to avoid seeing K but in the end I decided it was best to go. It was too late to cancel and I had to be honest.

I’m pretty sure K sensed that I wasn’t feeling so good. The friendly smile I forced was probably obvious. I explained that I had failed at everything and that I was losing it and going back to my old ways. I told her that I was doing so bloody well yet I still managed to mess everything up. I almost expected a telling off (always expecting the worst) but she remained calm and listened to me ramble on about my week. She noted that although I lacked motivation and went into shutdown mode I still maintained my new best behaviour.

At the end of my meeting with K she told me that everyone will have a bad day. When you’re depressed, you can’t just suddenly heal, it takes time. When changing our behaviour and thinking process it requires practice to stick in the mind and having aspergers syndrome can make it harder to adapt to. She told me to stop putting myself down over a bad week and focus on a new week. Start a fresh…

For my homework this week I have to write in a planner all of the things I aim to achieve for the week and to push myself into waking up at a reasonable hour. She recommended I tackle the chores and get back on top of my usual routine reassuring me it would get easier with time and all fit together again.

Present day…

It’s Wednesday and I’ve managed to stay on top of all of my chores. I started a new painting. I looked up a local teacher nearby that I will in touch with tomorrow to arrange my introduction session. I have looked into a new course subject that I have a fond interest for and have arranged to meet my friend tomorrow.

Looking back at last week I noticed that it was so easy for me to go into a shutdown. In fact, it took me five days to even register it was there. I can’t remember much from that week because whilst shutting down, it doesn’t even feel like I’m alive. I disconnect from everything around me and the inner me. It’s actually quite scary to lose yourself for a period of time. In the moment its safe and the mind is so fragile it can’t be disturbed. My senses are heightened so I can’t handle bright lights or certain sounds. It’s like wrapping up in a cocoon away from danger and completely shutting away from the world, which explains why the term shutdown is so fitting.

 

European Travels: Part 2

I can’t believe how far I’ve progressed since starting my therapy sessions in May. I remember the first month I felt elated and overwhelmed with all of the challenges that lay ahead. I vividly remember, the meltdowns that I was unable to control and feeling like a failure to my therapist and myself. I would sit there with my notes and watch guiltily as she assessed them. I’d expected her to think I was bat shit but she never reacted in such a way. She would delve deeper into the meltdowns and figure out the reasons behind them and go on to help me recognise the triggers for the future.

Months before my planned road trip to Europe I wasn’t excited for it, if anything I felt anxious about it. All I could think about was ruining it all with meltdowns or my insecurities running wild. I have always felt that people stare at me because of many reasons that I have branded into my mind. I never felt comfortable in my own skin. I avoided crowded places if I could. I’d cover my body when relaxing at the beach. I was conscious of people’s thoughts of me.

So in the build up to the trip my therapist K taught me how to eradicate my previous rules to prevent meltdowns. I was given homework each week where I would complete a list of points that make me a good person and was encouraged to think these through daily. K taught me how to read the signs of a potential meltdown and how to stop and think before reacting, which wasn’t necessary. I always needed answers. If I come across a problem in my mind I’d have to solve it but with depression there were some things I was unable to solve on my own. Having K answer them lifted a huge weight and enabled me to declutter and enjoy the time away.

When it was time for us to embark on our road trip I unknowingly at the time felt prepared. I organised some of our day trips in such a way that I wouldn’t feel exhausted too soon in the day and could enjoy each day with as little stress as possible. I was automatically taking on a new leaf in life without being aware. I was taking control over my life…

The holiday started off a little bumpy with a mixture of feelings of homesickness and loneliness. Strangely enough, driving to another country made me feel even further away from home than if I were to fly. After a few days I settled and those feelings were long forgotten. I explored each city with an open mind and realised half way through our trip that my guard had slipped. I was happy and excitable. I found myself on beaches and lakes in my swimsuit unaware of others. I relaxed completely and discovered a new found confidence in myself. I walked through the streets ignoring my insecurities and genuinely had an amazing experience.

One of the most memorable moments for me was when we drove from Geneva to Belgium. We stopped somewhere in France for a nap in the car. It was 4am and I couldn’t sleep so I decided to walk around the car park, find somewhere to sit and star gaze. I’d never seen so many stars so clearly. The best part being I could see the Great Rift. I’ve always wanted to be able to see it but could never see it in the UK. I sat there for ages taking in something I knew I wouldn’t see again for a while.

Other memorable moments were driving past the Pyrenees most days and seeing the beautiful terracotta houses with Mediterranean plants. I loved seeing the lavender farms and the many vineyards too. I was also very excited driving past the CERN head quarters in Geneva. Although some of the driving seemed tedious at times, I’ll miss the breathtaking scenery that I won’t be able to see in the UK.

Overall I’m rather proud of myself for having just one meltdown during the holiday! I kept a clear mind throughout the holiday and embraced each moment. I pushed myself this time. I sat in crowded bars and tried new foods. I thought before reacting. I told myself to remain calm in moments I’d normally lose myself in. I can’t believe I’ve actually listened to my therapist and taken charge of my life. I feel like a changed woman.

 


I’ll always yearn to explore. There’s something about travelling that sets you free, the map reading and unpredictable path of wonder. Picking up on the different traditions and cultures stays with you forever. I’ve always felt that desire to discover all of the world’s hidden treasures. The need to find the beauty where you least expect it and have the privilege to see as much of the world as possible. I love picking up on the different traditions and cultures.