Thursday, 25 August 2022

How to start pen palling

Following on from my last post I thought I'd do a post on how you can get started with pen palling if it is something you are interested in doing and I can guarantee that you will get much joy from it.

Firstly consider a few things:

  • Do you want to just start writing within your own country or are you happy to write internationally
  • How many pen pals do you fee you can realistically take on to start off with - as you find you enjoy pen palling you can always find new people to write to
  • Who do you want write to? - Age, gender, what the person's interest's are etc. It's important to have pen pals that you feel you have things in common with especially to start with I feel, but then I have a pen pal who isn't like me at all and we've been writing to each other for a long time now! 
  • How much to spend on writing supplies, to be honest you don't need that much and it's better to start with the basics which I'll list below and then as you find you get in pen palling you can grow and buy more bits and bobs.

Where to find pen pals?!

There are different ways and places that you can go to find pen pals. 

The first place is social media. I'm a user of Instagram and you can find people's pen pal/creative accounts like mine @naomi_creates__. You can search for hashtags like #PenPalsWanted and my advice is to check out people's accounts and their posts sharing photo's of their pen pal mail.

On Facebook there are pen pal groups you can join to find pen pals.

If you don't want to commit too much too soon and you have a chronic illness/disability you can join the Chronic Warrior Collective and register to join their monthly card swap and  when you join on your profile you can put that you're hoping to find pen pals through the monthly card swap. That's how I've found some of my pen pals.

Basic supplies to get started

➜ Writing sets which contain writing paper or note cards and then some envelopes alternatively you can buy writing paper and envelopes separately. I like the Paperchase spectroscope collection fore their postcards, writing paper and envelopes. Paperchase also do some nice writing sets and note card sets as well as postcards. On Amazon you can also find a range of writing and note card sets.

➜ Pens, I like to have a range of colours so gel pens work well and it can be fun to use glitter or scented pens. I really love Gelly Roll pens but I found these cheap fun pens to get you started here.

These are your main essentials as you can decorate a plain piece of writing paper with doodles using coloured pens as well as hand lettering. Writing sets come pre-designed. 

➜ You may also want to get a few sheets of stickers - Craft Planet do a great range of stickers. I find HobbyCraft good for washi tape as well as Etsy and Amazon. Though to be honest stickers and washi tape aren't core essentials.

Your main essentials is the enjoyment that you put into putting a letter together and the words you write. I get some mail from one pen pal and sometimes he writes on the most basic of supplies undecorated but it's what he writes to me that counts. Or I have another pen pal that writes to me and she just uses plain paper to write on but draws little basic doodles that she colours in. This just shows that all you need are some pens, paper and and envelope.

When you find a new pen pal decide who is going to write first. If you're writing first...

What to say in you first letter if you're writing first

Initially I like to say something like how exciting it is to have a new pen pal and how I look forward to getting to know them.

I then say my usual hello and how are you and I hope you are well.

In my first letter to a new pen pal I usually write just some things about myself (usually I've already said a little so my new pen pal can know me a little to decide if we feel a match to write to each other). But in my first letter I'll go into more detail about myself to introduce myself more fully to my pen pal. Somethings may include:

  • My age and which country I live in
  • My hobbies and interests
  • Fun facts about myself
  • Things I enjoy doing
  • My favourite things
  • What I do in my free time

Also I may add about what I've been up to recently and any upcoming plans and I'll ask my new pen pal things about them and how they are and what they've been up to and what plan they also have coming up.

Finally I'll add that I look forward to hearing from them and that I look forward to getting to know them and being their pen pal.


Here are some YouTube videos that may give you some inspiration:

Friday, 12 August 2022

Why letter writing is so important to me

Letter writing is a huge part of my life but it extends far beyond it just being a hobby. For me receiving a letter in the mail is my bit of connection to the outside world. I have severe M.E which means that I am housebound so I'm not able to go out and socialise like most people.

For me 'snail mail' is my socialising. I read about people's lives and hear what they've been up to they're likes and dislikes and everything in between and though my life isn't that exciting I get to share my life too. The audiobooks and podcasts I've been listening to, playlists of my favourite songs and lists of my favourite YouTubers and blogs, my current craft projects and other things I've been up to like doing my nails or blogging or doing something for my YouTube channel. Sometimes I do talk about my health but that's only one portion of me and I like to share all ten portions of me.

Sometimes I'll write a letter on letter writing paper; other times I'll write inside a handmade card other times I'll get creative especially when I've been inspired by a pen pal's mail or a YouTube video I've watched. I love making every letter/card I send out to my friends and pen pals utterly unique.

As well as writing to pen pals I like to write to friends, it's just nice and something different to a text or message on Instagram particularly when that friend is having a tough time or I just want to surprise them with some lovely mail especially if that friend has been really supportive.

Writing letters isn't easy for me with me M.E. I'm forever apologising for me delayed replies but thankfully everyone I write to is so understanding. It also takes me a while to complete replies and I have to write here and there when I'm able to so sometimes I end up rambling as I lose track of how much in total I've written!

Sometime when I'm not doing so well all I can manage are postcards or a single page reply but again everyone is lovely and understanding.

I have had pen pals in the past who haven't been understanding but I now have a lovely group of pen pals who I write to regularly or as often as we can and friends who we'll send mail to each other occasionally. Some of my pen pals and friends who I write to have chronic illnesses/disabilities too including M.E.

It's nice to have pen pals with M.E as the 'get it' in terms of understanding and living with the condition and how it may affect us and we can write about the highs and lows of living with M.E.

Though I'm not bed bound with my M.E I do spend the fast majority of my day on my bed as this is where I find I am most comfortable with my profiling bed and air flow mattress and I have an over bed table where I can put my laptop or colouring things or letter writing things.

Next to my bed I have a giant cork notice board - like the size you'd find in a class room! There I put up all my mail and other bits and bobs like bracelets I've kindly been given through people who've set up their own thing to make and send out bracelets to people dealing with chronic illness. I also have my knitted angels up there too from the Action for M.E's Christmas Angel's project.

Especially on my bad days I love looking up at my notice board; at all the novelty push pins I've collected and seeing all the mail up there reminds me that no matter how isolated and alone my M.E makes me feel that I am loved by so many people. I also feel a lot of gratitude for the time people have taken to write to me, or to make me that card or paint me that quote or to colour me that image and so on.

So as you can tell by now (hopefully) from this post that letter writing means a lot to mean and it's more than a fun crafty hobby. It's almost a social lifeline to the outside world and how I hear about the outside world too. It's a challenging hobby having the energy to reply to pen pals and make cards including birthday cards but it's worth it. It's also something that I can do in parts on days when I have the energy. Like today I finished writing in a card that I started writing in the other day so it's defiantly manageable and for me I have just enough pen pals that I can keep up with being able to write to and now I've been writing to them all for so long that I now consider them all to be friends as well as pen pals. But yes back when I began writing letters I didn't realise how important for my social wellbeing letter writing would become. 

A view point looking up at a large cork notice board with fairy lights bordering it on the notice board is a colourful collage of mail: cards, postcards and bits of paper with writing on covering the whole space of the notice board
The view from my bed looking up at my notice board

Saturday, 6 August 2022

A peek at some of my favourite phone apps

So first you can see that I really love my calendar and notes app..

I have all of my apps just on this on screen and then each apps is categorised into each folder - I just don't like having multiple screen of apps.

My Top 10 Apps

(In no particular order)

1. Lists

I would be totally lost without my calendar as in there I digitalised my daily plan which helps me manage my M.E. It also helps me to remember appointments and other things especially things that are out of routine.

2. Home Kit

I like my HomeKit where I can control the lighting in my room via my phone. For me this is more for accessibility as it's easier to tap some buttons or voice control to alter the lighting my room as opposed to getting out of bed which is not realistically an option for me to do. 

3. Expense

This is helps me with my incoming and outgoing expenses to help stay on track with my budgeting. I can create different 'accounts' so unlike on my bank where all my money is just one lump sum on Expense I have different accounts for different types of expenditures. Expense helps me stay on try of what I'm spending to help me try and save.

4. Dyson

This app means that I can control all the many differs feature of my my Dyson Hot+Cool™ fan on my phone as well create Siri short cut commands so for some things I can voice control certain features. 

5. Calendar

I would be totally lost without my calendar. Back when I was in Leeds in hospital and I was given my 'daily plan' (which I use to help manage my M.E) I digitalised this daily plan onto my calendar with alerts for every new event, plus my all time favourite thing... colour coding. What's more now with my life, my calendar and my daily plan is that it is easily adaptable. If I have an appointment I can move aspects of my daily plan around, especially activity and rest periods so that I'm still able to get enough mainly the latter in my day.

I'm a very visual person so I think that where my love of colour coding come in and being able to look at my calendar and see what is going on where and being able to visualise what is going on really helps me know what is going on especially if there is something going on in my week that isn't a typical occurrence.

6. 1SE - One Second Everyday

This is a one year long project.Each day I capture a one second video clip (sometimes a photo) and it collects together over the year to create a film of one second video clips giving a little glimpse into what was done that day. Like right now I am filming a time-lapse video of me typing blog post for today's video clip. Obviously I'm not perfect and I do forget and I do have to back track and fill in missing days. My life also isn't the most exciting one so I try come up with really creative videos.

7. Hip

This is a great app for keeping track of friends birthdays. I have it set to notify me 2 and 1 week before the birthday date to give me plenty of time to make and get a card posted. It also notifies me on the day so I can drop them a message.

8. iMovie

This is the app I use to make all of my video for my YouTube channel so definitely a favourite and essential app to have.

9. Good Reads

I really like the Good Reads app and being able to track the books I've read/listened to. I also have my yearly challenge where I set a target of getting through a set number of books in a year. I can also connect with friends and see what they've been reading and this gives me ideas for books I want to add to add to my 'Want to Read' shelf. When I've finished a book I can also leave a rating and also review. It's defiantly one of my favourite apps.

10. My Water

Monitoring my water intake is really important for my health so the My Water app makes it really easy to ensure that I'm staying nicely hydrated. You input what drink you've had say a 300ml cup of coffee and it will calculate the water balance of that drink which will go towards your daily target. So for me I aim to drink 2.5 litres a day so the My Water app helps me reach that target much more easily.

Saturday, 9 July 2022

Disability services I use and would recommend

Radar key

A key in a lock. The key has a blue easy to hold handle and a key ring attached.
Radar keys help you access disabled toilets and Changing Places that are fitted with a radar key lock. By having a radar key it helps you to access more of these facilities such as for me when I stop off at Peterborough Services my radar key enables me to access their Changing Places facility.

If you don't have a radar key you can get them from places like continence services, the blue badge company, aids and adaptations stores, Age UK, disability rights UK and other places.

Radar keys also come in different designs so the key I have has a large easy to grip key end making it easier for me to hold the key to unlock the door.

Sunflower Lanyard

A green lanyard with sunflowers on with a card attached that is green with sunflowers on and a white rounded corner with text reading hidden disabilities
The Sunflower Lanyard scheme is for people with invisible illnesses/hidden disabilities. Though when I leave the house I'm in my wheelchair I sill have hidden parts of my disabilities whether that be speech or cognitive difficulties, needing a carer with me or having hidden medical devices and other things. So because of this I wear a Sunflower Lanyard to identify to staff that I have hidden disabilities and this helps me with accessing the support I need. Such as one time I was able to bypass a queue into a store when explained that I was unable to queue aided by the highlight of the Sunflower Lanyard I was wearing. I do find that wearing my Sunflower Lanyard does help and staff are more receptive to offering more assistance or aiding my access when I do go out.

I just have a plain Sunflower Lanyard and card but you can get cards for your lanyard that specify different medical conditions or things like autism or that you a carer. You can now get personalised ID cards for your Sunflower Lanyard (which are sort-of similar to the Access cards but a little different).

You can get your Sunflower Lanyard and cards from the Hidden Disabilities website and then head to their shop through the menu.

Continence card

This is a little card that you can carry around with you to explain that you 'can't wait' and need quick access to a toilet. This could be if there is a queue for the toilet, explaining a need to use a disabled toilet (because not every disability is visible) or even in a shop or restaurant to hopefully use the staff toilet if there is no public toilet.

You can get these cards from the IBS Network and also The Bladder and Bowel Community. You can also get these cards for travelling having the same 'can't wait' information in other languages.

Access card

Access cards are a quick and easy way to communicate what your access needs are. On your card you will have different symbols which outline your access needs from having an assistance dog, being d/Deaf, needing essential carers with you or level access. For more information see their guidance on their different symbols.

When you apply for the card you have to explain why you need each access symbol. You will have to complete an application for a card and submit supporting evidence. The card costs £15 and is valid for 3 years.

To find out more check and to apply for an access card got to their website here.

CEA card

The CEA card allows you to go to the cinema and have someone get in for free with you. It is part of providing reasonable adjusts for disabled people meaning they can have someone enter the cinema with you. This means that this additional person is able to then provide if needed any support you may require.

There is a small cost for the card and it is valid for a year. You do have to provide evidence of disability to apply for a card.

To find out more check out the CEA card website here.

Audiobook services

I use several audiobook services, some of which you may be eligible for. 

The first is the RNIB Reading Library. I've been using this for many years way back when they used to send out to me books on a CD to listen to. Then they brought out a way to access their books through an app on your mobile phone instead - however you can still access what they have in their library in other formats.

The next two audiobook services accept a wider range of people to use their audiobook libraries - both are accessed through an app.

The second is Listening Books; like RNIB Listening Books is a charity that enables disabled people to access audiobooks. As well as books newspapers and magazines can also be accessed. 

Listening books does charge a small fee though this may be wavered based on your circumstances.

The last audiobook service I use is Calibre Audio. This is a free audiobook service and is very similar to the ones run by RNIB and Listening Books. Like the others I choose to listen through the app.

Sunday, 3 July 2022

Sometimes birthdays aren't a celebration

A plate with some rectangular slices of chocolate cake with decorations on top and some lit candles
A few weeks ago I had my 29th birthday but since becoming chronically ill in 2013 more and more as the years passed by I've found it harder to see my birthdays as something to celebrate.

This year was particularly hard as turning 29 I'm not where I planned to be as well as the thought that I'll be 30 next year! Back in 2012 and even before then I had my life (well my career as that was my sole focus in life) I'd planned that by the age I am now I'd be advancing in my career in mental health nursing with children and young people ready to start my psychotherapy training when I hit 30/my 30's.

Unfortunately that is not my life now and I know that I need to accept and work with my therapist on making a new plan for my life and to focus on the the present moment. I do practice gratitude and I do aim to celebrate the big and small achievements in my life. Simple things most people probably don't think twice about but for me they are truly are big things like recently managing to Shellac my nails when I haven't felt well enough to do so for a while bringing joy into my life as I love having my nails done.

So yes on my birthdays there are things in the past year that I have "celebrated" but I still find a birthdays a hard occasion to celebrate as I feel like my life is stuck. Most of my "celebrations" are over the small things (which are still important) but there are no big milestones moving my life forward in the way that that I'm wanting it to. Birthdays especially are a process of grieving as I see myself getting older and I wonder things like 'will I ever return to education?', 'will I even have gone on a holiday?', 'will I ever have my my own home?', 'will I even be able to work or volunteer?' and such things. Rather than happiness I often feel sadness on my birthday missing what I had planned for my life to be but struggling to plan a new alternative life for myself that's more accommodating for the challenges with my disabilities. I see my age increasing but I don't see my life going anywhere anytime soon and I feel so disheartened.

I do try to make my birthday a nice day. This year I kept to my usual schedule for the day that helps me manage my M.E and other illnesses. But I put on a facemask I'd been saving for a special occasion (so a birthday is a perfect reason to use it) and I put on some makeup (which always makes me feel brighter). For my afternoon activity I opened gifts from friends. For tea I asked if we could eat something I enjoyed so we had salad and fish finger wraps.

So it was a nice day and I did enjoy my birthday but there was a lot of thinking about 'here and now' and grief over the loss of the life I had planned out and I know now that I need to make a new plan both short and long term and I have started on that, it just takes some healing over the life I've lost.

I really hope that by next year I can truly celebrate my 30th birthday! - I've already asked if I could have some 3-0 balloons as a way to celebrate.

Monday, 6 June 2022

My body is a medical play thing - A poem by me

My body is a medical play thing
medical students and junior doctors surround me
eager to learn

Prodding, poking and flexing my body
trying out things they'd learnt in university
physical exams on an unusual body

Practicing taking a complex medical history
question after question
fascinated with the answers

They surround my bed
disturbing my quiet
when I'd rather be left to be ill alone

It makes me feel that to them
that they have forgotten that I am a person
but instead one of their cadavers 

I've never really given writing poetry a go. At school I hated poetry as my dyslexic brain could never get words to rhyme. However I've been reading a lot of Hannah Hodgson's work and from her YouTube channel she's gotten me interested in poetry. Hannah has made me realise that poetry is more than rhyming it's about expression of our thoughts, feeling and experiences. Hannah writes a lot about her experience of illness and this poem (well I hope it is) is an expression of how I feel from my own experiences.

Thursday, 26 May 2022

10 things I can't live without

1. Coffee

I do like to drink tea and herbal tea too but I do like to start my day with a nice cup of coffee especially if has come from my coffee machine. It's my little treat to start the day before Diane my PA arrives and the day begins.

2. Nail polish

I have more nail polishes than a dare count! I love doing my nails and nail art.

Fun fact: I'm a CND qualified nail artist. I did a training course to learn how to apply Shellac. I would love to Shellac my nails more often but it takes time to set up, do the whole application process then tidy especially as I love if I can to do some sort of nail art.

Having colour on my nails always make me feel brighter.

I love looking on Pinterest for new nail art ideas and inspiration.

3. Hot baths

I do find baths easier and I love to have a good long relaxing soak in a hot bath especially paired with my favourite toiletries like Rituals wash products and Lush bubble bars.

4. Audiobooks

Audiobooks are like my lifeline. I am trying to get back into reading, especially poetry which often isn't put into audio format but I'd be lost without audiobooks. When I was recently in hospital all I did was listen to books as well as that when I'm having a bad day audiobooks are great to ease my boredom.

There's a YouTuber I love called Hannah Hodgson and I've discovered some great books from her reviews and Good Reads account and Hannah is the one that introduced me to poetry and has helped me try out books I wouldn't have considered.

5. My friends and pen pals

I'd say that now I'm in a really good place when it comes to the people in my life; I now have a small but positive and supportive group of people around me. I always look forward to my pen pals letters and cards and a lot of my friends will occasionally write to me too. I much prefer to send messages to people in the mail than via text, plus a card and envelope can be nicely decorative.

6. My giant notice board

When we first moved here I asked if I could get a notice board for my room, only my Dad didn't realised that I was buying a 2m long notice board like the size he has in his classrooms at work. However it's now obvious why I need such a big notice board to display all my mail. It's hung next to my bed and it never fails to make me smile and feel loved when I see what I've put up there and I've collected lots of novelty push pins to jazz it up.

7. My iPhone

I've just got myself a new iPhone 13 (in pink with a sparkly case of course!) and I love it. My old iPhone 7 was starting to get old and I also needed a good camera for filming for my YouTube channel so I thought I'd get the iPhone 13 so it would be a 2-in-1 phone and camera. I'm defiantly not addicted and glued to my phone, my average daily screen time is just a few hours each day but I would feel very lost without having my phone with me.

8. My headphones/ear buds

I'm very hypersensitive to noise because of my M.E but also I like to tune noises out around me like the hum of my air mattress or the sounds of the hoover or other people's music (accompanied with their humming and singing along to the music) and instead tune into whatever I'm listening to whether this be an audiobook, podcast or my own music.

9. Polly

Polly is my doll which I got for my first Christmas and she's still with me though now a little floppy. Polly would most likely be the first thing I would try to rescue if there was a fire. When I was a child wherever it was I was sleeping she would HAVE to come with me but now I can go away and leave her behind.

10. My craft supplies

Where do I start with what crafts I've got! Crochet, card making, decoupage, block printing, painting, macramé, origami, colouring (and probably other crafts too)! Crafting is my thing, it's my hobby and enjoyment and I love making pretty things to send and put in letters to friends and pen pals. I'm also always up for giving new crafts a go and there are some things on my list like I'd love to make some things with resin but I'm trying to use up some of what I already have first but what I have seems never ending!

Tuesday, 17 May 2022

I've been missing since 2013

The 12th May marked M.E Awareness Day. I have been missing since 2013; the life I had planned out for me back in 2012 is now just something I dreamt up. I can't think about the past of the future, I must focus on the hear and now; getting from one hour to the next and at the end of the day it's exhausting to know that I will have to repeat all my daily struggles once again.

I started to become unwell in 2013 - that's sort of when my initial symptoms became progressively worse but becoming unwell was something gradual and I just thought it was because I was overworked at Uni and in February was when I had to leave Uni.

Over time my health worsened; I kept going to my GP and was repeatedly told that I had Post-Viral Fatigue Syndrome and my symptoms would ease. But they never did and my symptoms slowly worsened.

Fast forward to the 4th July 2017. I had my first appointment with my FND neurologist and in that appointment my diagnosis of FND was confirmed though some of my symptoms didn't fit with FND and so I was also told that I had M.E. Before the I hadn't heard of M.E and there was no further forwarding referral to an M.E service so I was left to go home, research M.E and find out how to live with it.

I'd say back then my M.E would have been classed as 'moderate' on the M.E Disability Rating Scale but now my M.E has been classed as 'severe' but personally I feel that whether your M.E is mild or severe it is still a difficult illness to manage not just practically but in terms of how poorly understood and under funded and researched the condition is.

Since 2013 I have been missing from education, meeting friends, going to social events, going on holiday, employment, voluntary work, on my bad days even leaving my bed and more. M.E has left me feeling invisible to the world and I only really see the same few faces. 

M.E has left me dealing with a myriad of different symptoms affecting my whole body including immune system - it is much much more than 'simply feeling tired'. 

I feel some days as though M.E has taken over and I'm not me anymore; I am M.E.

I try to be positive as the alternative is to be miserable and I'm not one of those 'woe is me' kinda people. When I first became unwell I did feel like being ill was all I had in my life but when I had some sessions with a health psychologist I started to see the other parts of me. I still have to work within the restrictions of my M.E and make adjustments when it gets worse as it has done lately (hence my lack of blogging as well as just sharing videos on my YouTube channel when my health allows) but it's all about balance as currently there is no cure for M.E.

I'm not quite sure how to end this blog post. I've just been typing here and there as my body allows and ironically I seem to have finished this post on a Tuesday which was the day that I used to post on. 

I think in this post I wanted to briefly share the timeline I've been on and also how invisible M.E makes me feel as well as being part of the millions of people missing due to M.E. I wish I could say that M.E is getting greater understanding and research but sadly that is not the case. Just know that if you also have M.E as invisible and missing as you may feel you are not as alone as you may feel you are.

Tuesday, 19 April 2022

I'm back! - Plus my recent hospital admission

Apologies for not posting for a few weeks, I had rather a lot going on with a combination of not being too well and preparing for my hospital admission.

Last week I had surgery at UCLH in London (my specialists are all down there). Compared to my local hospital the care I got on hospital was amazing. I'd been in contact with Sarah the special needs co-ordinator to ensure that my needs where met whilst I was in hospital such as ensuring I had a side room but also just to ease my anxiety. I was also given a bed the day before my surgery as I lived so far away from the hospital to save me travelling in the night and going more-or-less straight to theatre.

My hospital admission didn't get off to a good start. The night before my admission I called patient transport to get a pick up time for the following morning and was told that my assigned crew had tested positive for covid. Both myself and Dad kept calling for updates but eventually we where just told that I would't be getting transport. This was so hard to hear as long distance travelling takes a huge toll on my body and I require someone sat with me in the back of the ambulance in case I become unwell and I also need to travel on a stretcher. Thankfully Dad's a teacher and was off for the holidays and he didn't want me to miss my surgery or waste NHS money especially as my surgery was a special arrangement. So Dad drove me down and we got to UCLH. 

Dad couldn't see me to the ward as there where no disabled parking spaces so he could only drop me off in the atrium. The receptionists couldn't find me and I was getting in a panic. So I called Sarah and she came and met me and helped the receptionist's find me and them Sarah saw me up to the ward and my room.

I was very well prepared with my hospital passport and having my own room was so helpful as I could make it a better environment for me with the blinds down and it was quieter and I didn't have to worry as much about picking bugs up from other patients.

The staff where lovely; introducing themselves to me as my assigned nurse, ensuring I had all female care. Call bells where answered quickly as was medication when I asked if I could have pain relief or anti sickness. I felt listened to like when I said that due to my PoTS when I'm nil-by-mouth I'd need supplemental IV fluids. I also felt like the staff had time for me such as to help me get comfortable and changing positions to relieve my pressure areas and regularly checking my pressure areas as well as helping me with other care tasks and also getting a wash and a fresh change of clothes or just to talk about the audiobooks I'd been listening too or even just making me a coffee. So often in the past especially in my local hospital my care experiences where so different; waiting and waiting for my call bell to be answered, for pain relief to be given to me or wet clothes and bedding to be changed, bing told I have to wait for catering to have a drink etc. Also at UCLH though I didn't eat much due to my nausea the meal I did manage was really nice - chickpea and spinach curry.

My surgery went well and they knew before that I was at high risk of seizures post-op so I was given lots of medication to reduce my seizures and I was ITU for a few days after my surgery. I was put on a PCA, Patient Controlled Analgesic, so I had a button that I pressed whenever I needed some pain relief without having to ask the nurses. 

During my admission I got through plenty of audiobooks!

The journey home was difficult as I found the ambulance too bright and the transport crew where blasting music plus the motion of the vehicle so I just put my noice cancelling earbuds in and listened to my book and managed to sleep for a while.

When I'm in hospital I do like having the nurses take over my care giving me a bit of a break but I am glad to be home in my own bed and I'm just resting. I will admit I have felt quite low emotionally. Plus coming home of the Easter Bank Holiday I haven't been able to reach the community nurses or my GP practice. My nurse is coming on tomorrow (19th) and Diane, my PA, is back Wednesday so I'm just muddling though as best I can.

I want to give a shout out to my friend Elise who has been so supportive helping me out with advice, tips and support. It was also lovely to come home to mail from friends and pen pals.

Currently I'm just taking each day moment by moment both practically and emotionally. I've got at lot to deal with and I'm hoping I'll fall into a rhythm soon and that I'll have the energy to do some crafting soon as I have a few birthday's coming up and letters to reply to.

Tuesday, 29 March 2022

Payback | M.E Symptoms

Payback is one of my key symptoms especially in regards to my M.E. With everything I do I have to pay for it to varying degrees. Sometimes the payback isn't too bad and I'll just need to rest and take it easy depending on what I've done. If I've done a 'big thing' (which to most people probably isn't a big thing) the payback will be more severe and will include me experiencing Post-Exertion Malaise (PEM) - a key symptom of M.E.

Some of my payback and PEM symptoms include a flare-up of symptoms including increased pain; fatigue; malaise (generally feeling unwell); my immune flaring up in which I experience severe flu/viral-like symptoms; reduced cognitive function; headaches/migraines, autonomic issues - the list goes on. Basically my body just has a massive tantrum because it's had to do something!

Experiencing payback is really difficult because I have to do things and even with most tasks having the support of my PA, Diane, I still get payback but having my PA does really help to make life much easier for me. Some of what Diane does helps to minimise at times the level of payback I experience. So for example getting a bath is something I have to do and it's very exhausting for me. I do what I can in the bath, mainly washing my face and brushing my teeth and the rest of everything that needs doing Diane does. - See my vlog with my PA where I share the different ways in which Diane supports and enables me.

People often jump to M.E being about "feeling tired" but often people miss what exacerbates a person's fatigue (as well as the severity of a person's fatigue as well as the many many other symptoms of M.E which people don't comprehend and just jump to "feeling tired"). Payback is what adds to the fatigue and other symptoms of M.E. Yes I do feel tired with little reason; I wake up feeling more tired than I went to bed!

A ceramic blue cup being held under a tap with the water overflowing out of the overfilled cup
Payback is like a dripping tap. As your day goes on every little or big things you do has a drip drip effect and each drip (a) takes more of your precious limited energy and (b) fills up your little cup of fatigue. I say a little cup as it doesn't take much to overflow the cup to leave me utterly exhausted the point where that's me done for the day.

There are things that I find helps me to manage the payback (and other aspects of my M.E). Pacing and activity management play a huge part in helping me get through the day. I limit activities, depending on the activity to a set time period so I'm not doing an activity for longer than I can reasonably do. During the day I do a mixture of low-level activities (like laying and listening to a podcast episode) to more energy taking activities like crafting or letter writing. I also have set periodic rest periods for 30-60 minuets during the day to allow my body to pause. Resting doesn't recharge my energy levels and give me energy back but just stopping quite literally really helps me to just keep going until I can wind-down for bed.

Tuesday, 22 March 2022

Another little update

Since my last update back in June a lot has happened.

Firstly I had a nice Christmas. It was quiet and low-key which made it much more manageable especially for my M.E. Also over the Christmas period it was good to see my wider family who we don't see often including two of my cousins who I haven't seen in several years.

Health update

My health has been going downhill. My M.E is much more of a challenge; I think it's just been an accumulation of events and my body has struggled to recover before I hit the next hurdle. At first I thought that the state that my M.E is in now would be temporary but months on of feeling permanently exhausted and struggling to function I'm now having to accept that this may be my 'new normal' from now on. However what has help this time compared to previous declines with my M.E is some of the things that I learnt during my hospital admission in Leeds. So now I do more low-level actives, do activities for shorter periods or break them down more and have more and stick to my rest periods and daily schedule.

On top of that I've developed some additional neurological symptoms which my FND neurologist is part of condition which can alter and new symptoms can develop. These new symptoms include speech difficulties, increased muscle weakness and also increased problems with my nerves - the latter two making my double vision worse so I'm now back under the hospital for that. 

I also have a new nurse who is lovely. She's from the 'Chronic and Complex Team' so she's going to support me to try and get some things sorted for me ad come up with ways to reduce my hospital admissions and get community care and refer me and co-ordinate my care and work on my behalf with people like my GP.

Another update is the confirmation of my catheter operation. It's been cancelled a couple of times due to my complex needs but it's now confirmed and I'm due to be admitted on the 12th of April with my surgery being on the 13th - they booked a bed for me so I can travel the day before as otherwise I would have had to travel in the early hours to be at UCLH for 7am on the 13th! I'm nervous but looking for to the benefits having a catheter placed will bring.

I also now finally have a hospital profiling bed at home and my new nurse has prescribed me a hybrid mattress which has air flow in it which is massively helping with my pressure areas and my bed is making life much more comfortable and giving me more independence.

My care package

Yes another update is that I now have my care package from adult social care along with a good social worker and fab PA (I'm needing some extra PA's so hopefully I will get some extra people come along soon).

YouTube & my blog

I absolutely love my YouTube channel. My goal at the end of last year was to get to 100 subscribers and this year I wanted to reach 200 but I'm very almost at 200 subscribers already which is so so lovely. Seeing my subscriber and video watch count numbers grow really does make my day and motivates me to keep going as having a YouTube channel alongside my health problems, especially my M.E is really really hard and at times it is struggle.

I've also had a lot of success with my recent vlog video that I did with my PA Diane and I had a lot of positive feedback and comments and interaction with people. Also the recognition from the M.E Association from this video has been amazing in terms of how my blog and YouTube channel help to raise awareness of M.E.

Blog wise the M.E Association have chosen me to become one of their M.E Champion Bloggers which the recognition of the work I put into my blog and to raise awareness of living with M.E feels amazing.

A card with a patterned rainbow coloured in. Below is the original drawn design of the patterned rainbow with a pencil and pen to the side to the image.

Other random updates

I continue to be an ambassador for the Chronic Warrior Collective and I'm part of their 'Extra Card Crew' - sending mail out to those having a tough time. The CWC has also asked me to be part of their 'Artist Crew' to design cards used by those in the Extra Card Crew and with their wider projects and in the recent pack of cards I got from the CWC it was lovely to see two of my card designs have been used.

Tuesday, 15 March 2022

It never gets easier... | Eating disorders and what needs to change

Fact: eating disorders have the highest mortality rate of any mental illness

As a teenager I was very unwell entrenched in an inner battle with anorexia. I spent time in several inpatient stays. What saved me was psychotherapy though my eating disorder is still something that stays with me to this day.

On Sunday I heard of another person I knew closely from one of the inpatient units I was in who had passed away. 

I now now 6 people who have passed away from eating disorders, some have passed away from the illnesses itself others have ended their own life. Some where still very much unwell when they passed away others where well but had lasting damage to the body. Even my body has taken a toll from my own eating disorder.

Every time I hear of another life sadly lost it still hits me hard and never gets easier. At 28 I feel too young to know too many young lives taken too soon.

I still feel that more needs to be done to prevent these tragedies. Still far too often early intervention isn't happening; something I've been part of campaigning for for a lot time. More awareness is also greatly needed in places like schools and by primary care professionals such as GP's to aid early intervention and to support people like GP's to manage those who first start to show signs of developing an eating disorder. Also, something I felt was also missing was the care, or lack of, when I was discharged. I was seen by mental health services but they weren't specialists in eating disorders.

There needs to be better access to specialist eating disorder services - I know from personal experience that even when there is a specialist eating disorder service it is hard to get help from them. Often their main acceptance criteria is your BMI which is totally wrong. If you've been discharged from an impatient unit but need ongoing support post discharge your BMI will be within the normal range as well those who are in the early stages of developing an eating disorder will also have a normal BMI and for some types of eating disorders their BMI will remain within the normal range. So BMI shouldn't be used as an admittance criteria for help and support from an eating disorder service.

I also feel that the media need to be more responsible and thoughtful of how they approach the subject of eating disorders. There are many things that I find unhelpful when I read media reports around eating disorders and I can speak from personal experience when working with the media myself to help raise awareness of eating disorders. Awareness and facts about eating disorders need to be the focus; not a person's weight or a photograph of them when they were quite unwell.

Finally I just want to end this post in memory of Hayley and everyone else who is no long here. Hopefully the inquest for Hayley will help bring improvements for those with eating disorder and something will come from her loss.

Tuesday, 8 March 2022

How my PA supports and enables me | YouTube video [CC]

Diane is my PA (Personal Assistant). I filmed this vlog over 3 days to share with you the many different ways in which Diane supports and enables me to live my life, from helping wash and dress, to going out and getting coffee to taking me to hospital appointments. Diane has been my PA for nearly a year now and we get on really well which is what you need from a PA as you spend so much time with them. We've never yet run out of things to talk about and we can have a laugh about things too. Even though we do seemingly fun things like going for coffee it's benefitting my social and emotional wellbeing as the vast majority of the time I'm housebound (the week filmed was very very unusual as I went out twice that week - normally I only go out once a week max). Also I need Diane's support when I do go out because of my medical needs such as when I had a seizure at the hospital (probably because my body was exhausted from leaving the house). Also with Diane being my PA for a while now she has become attuned to my routine and care needs from what toiletries I like to go together to managing my health care needs like when I have seizures or pass out. 

Before Diane came along I didn't know anything about the role of a PA and now I can see what a rewarding job it can be as Diane supports and enhances my life so much and in so many ways, even if it is just enabling me to enjoy a nice long hot bath. Becoming a PA isn't for everyone but it's a career I would encourage people to look into.

Click on the video to watch on YouTube

If you haven't already subscribed to my channel and you would like to (you don't have to) but it would be lovely to see you become a new subscriber and every time I do get a new subscriber it really does make me happy as I love my channel but being a disabled YouTuber it is a huge challenge.

Tuesday, 1 March 2022

Living without a diagnosis

When I first started to become unwell in 2013 no one could tell me what was wrong with me; my symptoms where just 'medically unexplained'. At first I just thought things would be temporary. However as time went by my symptoms continued and worsened and as they did and I still received no answers I started to question myself. Names for illnesses floated around but nothing was certain and my symptoms remained 'medically unexplained'. It frustrated and upset me as what I was going through was real, especially the times when I wasn't believed or was told my symptoms where psychosomatic or 'all in my mind' which lead to receiving poor care from professionals.

Living without a diagnosis was so hard as when I went to the hospital or saw another professional like my GP or when I was asked what was wrong with me I had no answers to give. It was so difficult on many levels as what I was going through was real but it wasn't backed up by a diagnosis. Having no diagnosis to give also made it hard when I was applying for ESA and PIP - government benefits for when you're too unwell to work or to cover the extra costs incurred due to having a chronic illness/disability. Having no diagnosis also meant that I got little in the way of treatment for my symptoms. I would have a seizure but paramedics where reluctant to give me diazepam or my GP was hesitant to prescribe pain relief medication. Other aspects of my 'medically unexplained symptoms' where also met with lack of surety such as believing that my joints where actually dislocating or I was having the amount of migraines I was claiming to have. With regards to my high levels of fatigue my GP on a number of occasion did diagnose me with 'Post Viral Fatigue Syndrome' but I was told that I would soon recover, but I never did.

It wasn't until the July 4th in 2017 that I was told I had Functional Neurological Disorder and M.E (Myalgic Encephalopathy) by my neurologist Professor Mark Edwards. FND was one of the suspected diagnosis and looking into FND Professor Edwards is a predominately figure for FND and I begged my GP to refer me to him. Getting my first two diagnosis' was like a huge weight had been lifted and it confirmed that what I was medically going through was actually real. Finally I could stop blaming myself for what I was going through and the symptoms I was experiencing were real and not imagined or 'all in my head'. I had a name to give to people to explain why I was having this symptom or that symptom. Further to that my neurologist noted my hypermobility and referred me onto a rheumatologist and later I would be diagnosed with Hypermobility Spectrum Disorder/Ehlers-Danlos Syndrome (over the years professionals have used both HSD and hEDS but there is little difference between the two). 

Looking at that particular diagnosis it took me back to my childhood and there I can now clearly see the signs of my EDS then. EDS is a hereditary connective tissue disorder; it was something I was born with but as often the case with EDS many people with the condition don't get their diagnosis until they are much older. I was born with a spinal curvature, hyperlordosis where my lower spine acutely curves inwards. I'm no stranger to back pain and joint pain due to my hyperlordosis but growing up my joint and related pain was always dismissed as 'growing pain' but now I can clearly see the signs of my EDS. I was a dancer and being hypermobile I used it to my advantage despite my pain. But again looking back my "growing pains" where dismissed as that and no one looked further into it.

I must say that many people are hypermobile to one degree or another and a lot of these people use it to their advantage, especially dancers, gymnasts and athletes. However the vast majority of those who do have hypermobility do not have EDS. Hopefully one day like the other forms of EDS a genetic marker will be found to help give people like me diagnosis, especially treating the condition early on such as when I was younger instead of leaving it until I was older and had developed many complications as a result of my EDS.

Coming to the present day I now have other diagnosis, often ones that come secondary to my 'main' illnesses, such as PoTS (Postural Orthostatic Tachycardia Syndrome).

Now I have a diagnosis (or a few as the case is now) means I can get the care I need as generally when you have a diagnosis you have NICE guidelines to tell professionals how to treat and care for me. I say generally as FND has yet to be given a formal NICE guideline but on a positive note last year the NICE guidelines for M.E where updated which was greatly welcomed by many. I've also found that now I have names to give to people like when I dislocate a joint I can explain that I have EDS or my non-epileptic seizures are because of my FND. Most of the time my symptoms are now understood, though I do find myself in situations where I'm not believed because my illnesses are not that well understood. On the whole though now I have my diagnosis' things are much better and though my health isn't great I'm getting the care and support I need compared to the time when my symptoms where 'medically unexplained'.

Tuesday, 22 February 2022

Good care matters - my experiences of receiving care

I've had support from carers for several years now and over that time the care that I've received has been varied from wonderful right down to horrendous experiences of care so I've come to realise that good care matters.

Last week my PA was on leave and my Dad and stepmum were away for a few days and I had to resort to using a care agency again to pop in, check I'm okay and to help me out with tasks including getting washed and dressed, taking my medication and preparing meals and drinks.

I was quite anxious to say the least about having a care agency as the last care agency I had when I first got my care package was awful. Half the time I wondered why many of the carers where woking in the job and I never received the amount of time I was allocated and I was often rushed, essential tasks missed like not being given my medication or having a drink. Carers were always consistency late too, especially at bedtime as bedtime is when I'm at my worst. I also need go to bed fairly early so I can get as much sleep as possible to allow my body to function during the day. All-in-all it was making me ill and I was miserable and though I needed the care I couldn't take putting up with this "care" any longer. I was then approved to have my care provided through direct payments which allowed my previously privately employed PA to come back and continue to work as my PA. Currently I'm trying to get additional PA's to my care team as I need care 7 days a week and also to have different PA's to cover for each other for when one is ill or on holiday.

Anyway last week for a few days I had a different care agency. I couldn't have faulted the care I received. I felt that my care needs and wishes where fully met and I was treated with respect and individuality as a young adult who just so happened to need a little help to be able to live their life. I was allowed to choose how I spent my care such as having a bath over a shower, how I like to have my hair washed and my other routines that I like when getting washed and dressed or little things like how much cumber I had in my sandwich. Little things like this when you need a hand with things matters and it makes me feel empowered especially because I need help with things that most people my age can do on their own. For example with my bath I can't bathe on my own but being able to chose what products I use and the order of at one point I'm wanting my hair washing, or when I wash my face or when my body is washed gives me as much control with support and enablement.

My illnesses don't yet have a cure and at 28 it can be difficult to need help to manage different aspects of my life. However good care helps me feel just that little bit more in control of a life I have little control over. Good care make me feel better an it improves my quality of life just that little bit better too both physically, socially and emotionally.

Receiving good care has made me realise what an amazing job care work can be. For someone needing care though it can be hard unfortunately to find good care at times. Thankfully most of my experience of receiving care has been good but like I mentioned I've had my fair share of bad experiences. Not just with community care but when I've been in hospital too and I've heard from home care workers their own experiences of seeing poor care from other carers. Often I've found it depends upon the care agency. The agency I had where I had an awful experiences there where some good carers but on the whole most of the "carers" to me seemed to be working in the wrong industry.

I've always felt and said that carers need greater recognition for what they do as well as to be paid more than just the national minimum wage to reflect the big difference they make to many disabled and chronically ill people's lives. I don't get how someone working in a supermarket can earn more than a carer or a personal assistant. Personally the latter is a much more worthwhile job.

I want to raise more awareness of the role carers play. To help with this I plan to vlog some of what my PA supports me with to give people an insight into the role and the variety in what the job entails. Such as today (Monday 21st) my PA has made my breakfast, supported me to wash and dress, taken me to a nurse appointment for some pre surgery tests. We then went for a drive-thru coffee and came back to get some lunch. How's that for variety! I wish I'd filmed today but hopefully when I have another day like today I can film it but at the moment I've not been well enough to be able to do the editing for YouTube videos so I've been using some videos I made a while back and I'm feeling wiped out from leaving the house.

Tuesday, 15 February 2022

'Dear Body' by Hannah Hodgson | Poetry review

'Dear Body' is a poetry pamphlet written by Hannah Hodgson. It was Hannah herself who got me interested in poetry through her YouTube channel where she shares videos of book and poetry reviews as well as sharing her own story of living with a life limiting illness and being a palliative care patient and hospice user.

Hannah's YouTube channel is linked here.

I've started to read other poetry but 'Dear Body' was the first piece of poetry that I actually understood and I liked the the different styles in which Hannah had written her poems to exaggerate the topic of the poem, such as the poem 'Processing' where there where very spaces in-between each word to emphasis the difficulty in processing thoughts due to poor concentration and focus.

As well as 'Dear Body' containing poetry I could understand and grasp it was also a collection of poems I could relate to on a very personal level so the poetry collection was even more emotive. It help creatively speak out my own thoughts, feelings and experiences of living with challenging complex health problems. Of how disability is visually left out because it is not a picture of beauty, the marks and scars left on ones own body, the frustrations of living in a body that is broken and a mind that struggles to function, the invisibility of our symptoms and so much more.

Hannah also guest blogged for me a while back and in her post she shared one of her poems 'Invisible'. The post by Hannah which was shared for World Poetry Day can be found here.

If you're interested in poetry or are new to poetry, or to those who are chronically ill or disabled and want to read something relatable then I would defiantly say that 'Dear Body' is a good poetry pamphlet to turn to.

You can purchase 'Dear Body' from Wayleave Press for £5 - link here.

Tuesday, 8 February 2022

Dealing with boredom when I'm having a bad day

The reality of severe M.E
I have severe M.E; it's a neuro-immune condition that has many different symptoms. M.E affects about 250,000 people in the UK of all ages and around 1 in 4 people will be severely or very severely affected.

I have variable good and bad days. On my bad days it can be a real struggle; my pain levels increase and I'm much more sensitive to light and sound. My mobility is also even more reduced also side worsened orthostatic intolerance and autonomic issues mean that I have to spend most of my day laid down. My cognitive function and brain fog is also more of a challenge. All these things are present most days but they're more pronounced on my bad days.

The things I can manage to do on a good or even average day is reduced so what I do to entertain myself is more challenging so I have to find ways to avoid boredom whilst managing my different symptoms and trying to also distract myself from how I'm feeling not just physically but emotionally too.

One of the main ways that helps me deal with my boredom on my bad days as I lay in a dimmed room is listening to audiobooks and podcasts on a really low volume and I often put in my noise cancelling earplugs to block out the painful background noise and then put on my noise cancelling headphones or my headband earphones so I can just have the low volume of my book or podcast playing to me. I also like options from the book I'm listening to and then the wide variety of different podcasts as I can struggle to focus on one thing for too long sometimes. Especially with podcasts there's lots of different one to choose from in terms on genre and topics whether it be a series or something like a documentary or a chatty style podcast and with these each episode has a different focus. This helps as generally podcast episodes aren't too long so that helps me with my concentration difficulties. 

Usually I can tolerate listening to books and podcasts but if I can't because for example my noise sensitivity is too much or I can't concentrate or I just want something different to do I use my imagination. I play games in my head especially Carcassonne, a building strategy game. We have the actual game which I love playing when I'm able to so it's fun to play it in my head and work on my strategy for when I next play it with other people. Tetris is another game I play in my head. Something else I do with my imagination is to plan and build a house and design the architecture and then the different rooms and then put together the interior design.

I also enjoy mindfulness meditations which I do daily during my rest periods and again I like the variety of the different mindfulness meditations that are out there from visualisation meditations to breathing exercises.

The last thing I do in my mind is plan out future blog posts and videos for my YouTube channel.

Tuesday, 1 February 2022

Super easy scrap paper handmade card + video

Card example
This is such an easy card to make and can be adapted for different occasions as well as the different craft supplies you own plus putting your own twist on style of the card.

Difficulty rating: ★ ☆ ☆ ☆ ☆ Total beginner

What you will need...

  • Blank card and envelope (any size)
  • Co-ordinating patterned scrap paper (or card) - perfect if you're coming to the end of a paper pad (your paper needs to be longer than the width of your blank card)
  • Sentiment - this could be a stamp, sticker, die cut, hand lettered etc
  • Either a paper trimmer or a ruler and pencil
  • Scissors
  • Glue - liquid craft glue or just a normal glue stick
  • Border sticker or alternatively you could use ribbon, washi tape, a very small strip of plain or shiny or glitter card or something similar

How to make the card...

1. Cut your scrap paper into strips

Cut your scrap paper into 2.5cm (1 inch) strips. You'll need around 5 or 6 strips depending on the size of your card and the sentiment at the top.

If you're using a small blank card you may want to cut thinner strips or vice versa with a larger blank card you may want to cut slightly wider strips, say 3cm unless you want a wider variety of patterned paper strips.

2. Place your sentiment at the top of the card

You don't have to place your sentiment first but I find it helps me to work out the placement of my paper strips and also the border that I'm going to add between the top paper strip and the sentiment.

3. Work out what order you want to place your paper strips

Before gluing down your paper strips play around and work out what order you would like to place down your paper strips. 

The first strip of paper is placed along the bottom of the card and the rest of the strips will be placed at an angle.

Tip: Take a photo so you can recall what order your strips will be placed in

4. Glue down your paper strips

If you're using liquid glue, glue down along the bottom of your card and also up the sides of the blank card front. 

On the first strip of card place a line of glue along the top and lay it along the bottom of the card.

With the other paper strips glue a line along the top and bottom.

5. Add your finishing touches

Along the top of you last strip of card place a border to finish off. This could be a border sticker either one with a pattern or a plain or glitter border sticker. Alternatively you could use ribbon, thin washi tape or a very thin strip of metallic or glitter card as a few ideas.

If there is room you could also add an embellishment such as a name, a sticker or like I used a 3D butterfly card topper. 

Ways you can adapt this card...

Some cards I have made as shown in the video tutorial below, other times I have used a sticker or die cut sentiment or used alphabet stickers or stamps to personalise the card.

I've also used different sized paper strips depending on the size of the blank card I'm using.

Another thing I have done is to completely cover the blank card front in paper strips and then mounted on top a sentiment which I had stamped onto white card mounted onto coloured card that complimented the colour of the paper strips and then stuck it on the card using 3D adhesive foam. 

The many possible ways you can finish or adapt this card are endless!

Video tutorial

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.