Tuesday 25 January 2022

Kintsugi 金継ぎ | Acceptance of physical & mental brokenness

I've been listening to a mindfulness meditation series on Headspace about self-compassion. In each meditation the narrator gets you to repeat to yourself the following affirmations:

"May I accept who I am", "May I love myself as I am" and "May be at ease with who I am"

At first I found this hard to really take in. I don't love, accept or feel at ease with myself. Part of this was about my disabilities as it's taken me a long time to accept my chronic health problems into my life. My disabilities have made it hard to love myself as I am now and equally to be at ease with myself and my disabilities and all that comes along with having disabilities and chronic health problems.

It can be hard to love a broken body and mind; especially one that can't be fixed. So in the absence of being able to fix my brokenness I must learn to love myself as I am and accept my brokenness and also be at ease living inside a broken body and mind.

Photo of a light green bowl which has been broken and glue back together using a gold coloured glue
My Kintsugi bowl
Kintsugi, 金継ぎ, is the Japanese art of putting broken pottery pieces back together with gold — built on the idea that in embracing flaws and imperfections, you can create an even stronger, more beautiful piece of art.

Something I did a while back with my therapist was to make a Kintsugi bowl. It was a kit my therapist had bought for me, which was such a lovely thing for her to do for me and was so kind of her. 

The small bowl was whole. I then had to break the bowl, which I tried to do artfully, ensuring that the bowl was broken in a particular way. With my own physical and mental brokenness there was no artful way in which I have become broken.

Once I felt happy with my artfully broken bowl I set out to fix it, but to fix it in a way that would make the bowl more beautiful for having been broken. I mixed up a combination of glue and gold powder to make a golden glue to piece back together my now broken bowl. When I reflected with my therapist about how I glued to bowl back together my therapist pointed out to me about how I glued the bowl back together (therapists have to analyse everything (!) but it can be helpful at times and even I'm analysing in this post!). I didn't rush putting my broken bowl back together I carefully applied the glue, like how I care for my own broken pieces. I applied the amount of glue that I wanted. Remembering back to this therapy session I remember how I wanted enough glue so that it was visible and showed through the cracks of the differs ceramic shards. It was a carefully chosen process. With my own brokenness some of my cracks are invisible; my pain and exhaustion and struggles with mental illness cannot be seen but at the same time I also have scars on my body that are visible but I choose to hide.

The whole process of braking the bowl and then putting it back together made me think of my own body and mind's brokenness. I feel like throughout my whole life I've been broken in one way or another and smashed apart as I've gone through my life both by other people around me but also due to physical and mental illness.

A turquoise background with white text in a handwritten like font. The test reads "I am beautifully broken, perfectly imperfect, beautiful in all my flaws. All together I am a beautiful disaster."
In therapy over the years I've often stated how I feel that I'm broken into a million pieces and 'too broken to be fixed'. Unlike how I artfully broke the bowl I've never had any control over how my mind and body has broken and because of this it's been difficult to piece myself back together. Therapy I would say is the thing that's held my brokenness the most over the years. Sure inpatient and day patient treatment (both psychiatric units and medical admissions) has kept me safe and in all honesty alive, but even my times in hospital have added to my brokenness from so of the things I experienced as a patient. Then there is the medication I take both for my physical symptoms and also my two psychiatric medications. Medication just enables me to manage my physical and mental health symptoms to allow me to just get through the day. 

Therapy isn't for everyone but for me over the years therapy (most of the time) has been what has held me together the most to stop my broken pieces being blown away in the wind.

Going back to the kintsugi bowl I did with my therapist a few months ago massively helped me. It was such a simple thing that me and my therapist did together but it really helped me to accept my physical and mental brokenness but how in time I can piece my life back together. I will never be whole and unbroken again; I will always have to deal with being physically and mentally unwell. However out my brokenness and with time my broken pieces will come together and what I've learnt over that time in life and in therapy I can turn my brokenness into some better and create something positive. I can use my brokenness for example to help others, like I hope I do through my blog and what I share over on my YouTube channel and also through things like voluntary work and the support I give to my friends and others around me and hopefully in the future when/if I'm able to work. I can use my lived experience to my advantage and turn negatives into positives which I feel I already have done.

As well as helping others inwardly I can turn my brokenness into something beautiful. There is no cure for my physical and mental illnesses but as I was putting my kintsugi bowl together I realised that in my own self I can develop a better attitude and learn to accept my brokenness and learn to love myself including the broken parts and also to live and be a ease with my brokenness. By doing this I can start to feel whole, glued back together with gold.

I keep my kintsugi bowl next to my bed and put random bits on bobs in it but every time I see the bowl it reminds me that in time my body and mind can become like that bowl, broken but whole held together with something beautiful.

Tuesday 18 January 2022

Book review: 'Me Before You' by Jojo Moyes | *Spoiler alert*

Front page of a book. Large text reading the title 'Me Before You'. A black silhouette of a woman releasing a bird into flight. Below is the authors name 'Jojo Moyes' dotted around the image are quoted reviews of the book.

Rating: ★ ★ ★ ☆ ☆ 

The plot of the story is basically Lou, a young woman in her 20's who is looking for a job after the café she worked at closed down. After many failed attempts at finding new employment Lou takes on a job caring for Will who became a quadriplegic after being hit by a motorcycle. Following his injury Will struggles to adapt to becoming a quadriplegic.

It's a romance novel, a genre I'd never read before. If I hadn't of heard Jojo Moyes sharing that it was a romance novel in an interview with her at the end of the audiobook I wouldn't have instantly put it down to be a romance novel. Saying that though there was an element of romance as Lou and Will over time grew feelings for each other as the story unfolded.

I think the author got it sort-of accurate on Lou's perspective as she get's used to caring for someone with a disability as someone new to this type of work. For example how at first Lou and Will struggle to connect with each other and Lou getting used to taking on a care work role such as managing Will's medications and the complexities of his health and how she feels unsure of what she is doing. Then on the flip side Will getting used to having Lou as his carer. I also feel that the author did her research on the affects of spinal cord injuries and also their care needs such as at one point in the book Will develops a fever and due to his injury he is unable to control his body temperature and required medical intervention.

I think the author got it accurate sort-of such as how at first getting used to having a new carer and also for Will how it feels for him needing someone to do so much for him and the loss felt when you become disabled which I could relate to. As well as this the emotional response people have towards their acquired disability. I think it was positive how Lou tried to show Will that there’s a life you can still live when you have a disability.

Despite Lou's best efforts to help Will see that he can have a life worth living despite his health problems Will remains deeply unhappy and wanted to end his life in Switzerland with the organisation Dignitas. I felt it was very brave of the author to bring into the story assisted dying and the mix of feelings and reactions from people Will, his family, Lou her sister and the quadriplegic message board. 

I liked how though most of the book was written from Lou's perspective that parts of the book were in the view of other characters such as Will's parents and Lou's sister however I would have like a chapter written from Will's perspective.

All-in-all it was a good book and I would like to see the film version and also read the book sequel at some point but I don't feel in a rush to want to read it.

Tuesday 11 January 2022

Why the plastic straw ban is still a big deal

It's been a long time since the straw ban came into place but this issue still affects me so much.

Plastic straws are an essential aid for me; without them I'd struggle to drink and the vast majority of straw alternatives are not suitable: injury risk, allergies, not positionable, too expense, hygiene etc - see the chart below. I have floppy weak wrists so I can's tip a cup towards me; I also have to use lidded cups because of my involuntary movements. When I'm in hospital I hate being given the beaker cups with a spout lid.

Everyone I know who has a need for plastic straws always re-uses them; they are never 'single use'. When the ban came in I stocked up on straws so I have plenty to keep me going for quite a long time. I do have some silicon straws that can be spilt down and reconnected which (a) makes they great to clean but also (b) these are hypoallergenic silicone but the issue with these straws are that I can't position them to bend. I have to spend a lot of time laid down so I've perfected my ability to drink in this position and bendy plastic straws are the only option in this situation.

One thing I don't get is that if I say ordered a frappachino it comes in a plastic cup with a plastic lid, or if I buy a Diet Coke it's in a plastic bottle (which I still need a straw for) or if I order coffee and have a fruit pot the fruit pot comes in a plastic pot and I may also be given a plastic fork and if my drink is to-go it has a plastic lid. Yet whenever I ask for a straw it's paper or at the café at my hospital they provide hard biodegradable plastic straws that (a) melt in hot liquids, (b) if I jerk I jab the roof of my mouth and both the paper and plastic straw aren't bendable. I do try to carry around some straws but sometimes I forget to bring some with me or I don't plan to get a drink. Also where is the recycling points for my plastic bottle or fruit pot or paper cup and straw?!

So as you can see the straw ban though old now is still a big deal for me and probably many other disabled people.

Friday 7 January 2022

Hello 2022 - Life & health chat | YouTube video

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Tuesday 4 January 2022

Positives of 2021 and plans for 2022

It's so easy to dwell on the challenges of the past year. Thinking about how my M.E has worsened and whether this new state my M.E is in is now my new normal or how my FND has progressed with new symptoms developing and the difficulties I've had at times to access care like the migraine clinic that I've been waiting to see for about 2 years. Then there was the surgery I'm desperate to have an I could have had it but I need to have it in an NHS hospital as I need ITU/HDU on standby due to the complexity of my needs and no one can tell me when my surgery will happen. Then there's the dwelling on how the following year will be and the challenges I will undoubtably have to deal with ahead of me.

Dwelling on the challenges and negatives is so easy so what I've been doing with my therapist is thinking about the positives of this year no matter how small and also what I've achieved this year. This has really helped me to see this year much better; it doesn't take away the challenges but it's made me see things in a different and brighter way.

So, what's been positive in 2021?...

  • The first thing is how I've exceeded my goal of getting 100 subscribers to my YouTube channel. At the time of typing this it's not the end of the year yet and today checking on my channel I have 128 subscribers!
  • I've also exceeded to number of books I planed to listen to/read on my Good Reads reading challenge.
  • I've supported and participated in different opportunities. I've written articles for both the M.E Association and Action for M.E and also supported and been part of some of the campaigns they've run this year. I'm now an M.E Champion Blogger for the M.E Association. I also have become and ambassador for the Chronic Warrior Collective and joined their Extra Card Crew and supported their work.
  • I feel so much gratitude towards my friends and pen pals for all the messages and mail I've received this year.
  • This year I finally got a care package after years of trying and I now feel supported by our local adult social care service. I have a very good social worker, and a fab PA. Plus also in my care I have some good doctors and my link worker from the Social Prescribing team is great. Also just recently I've been assigned to a lovely advanced nurse practitioner from the 'Chronic and Complex' (which is how they alway see me when I'm in hospital) team who's supporting me with my care. I feel that in terms of my health and social care the past few months my care and support has really come together finally and getting this care I feel more positive about 2022.

Projects and things I want to do in 2022...

  • I what to buy things from smaller or independent shops as much as possible more this year
  • I want to commit to my photo journal 
  • Also I want to stick with my 1 Second Every Day project and come up with some creative video clips (as my life isn't that interesting which I think is why I stopped last year)
  • I want to finish my BSL online course
  • I would love to learn how to braid my hair
  • I want to continue growing my blog and YouTube channel
  • And finally hopefully I'll have my surgery soon and some extra PA's too!