Tuesday, 20 July 2021

What's on my phone?

Rainbow watercolour background. On the right is blue text reading some of my favourite apps and apps that help me manage my health

1SE logo which is a navy blue square with a green number one graphic and wrapped around the number one is a graphic of a film reel
One Second Every Day

I've been doing this project for a couple of years and it wonderful for looking back upon what I've been up to and what has gone on in my life. Each day I take a one second video clip (or photograph) for every day of the year.

Expense

I find this a great app for monitoring my spending on incoming money as well as helping me save and stay on budget.

With the Expense app I can create different 'accounts' so I can separate for example my disability expenses from my every day spending. You also have different categories in which it tells you how much you're spending on what for example clothes, toiletries, postage etc and you can set limits on how much you spend on each category. It also produces reports on where you incoming and outgoing money is coming and going from so say for example if you see that you're spending too much on a particular category you'll know to spend less in that area if possible.

You can also make notes and take photos of things like receipts. . 


Mindfulness & Soundscape Apps

Regtangle with app logos inside and written text underneath
I use quite a few mindfulness and soundscapes apps. I find them especially helpful for my rest periods - I find it more restful as I've learnt to listen to a mindfulness and soundscapes when I have my rest periods rather than say for example listen to a podcast as that is still stimulating.

The main apps I use and enjoy are Headspace, Relax Melodies, Calm, Sleepiest, White Noise, Birdsong.fm and the RSPB Birdsong Radio.



Podcasts, EasyReader & BBC Sounds

EasyReady is the app that plays my audiobooks from the RNIB Reading Library.

Then for podcasts I use the Apple Podcasts app and then I also have the BBC Sounds app of podcasts but also to listen to BBC radio stations, music and BBC podcasts.

I enjoy listening to the radio and some of my favourite podcasts is the BBC Ouch! Disability podcast, the ME Show, The Missing, Beyond Belief, A Quaker Take, The Documentary, The Enquiry, Beyond Today amongst others.


Games

Some of my favourite games to play on my phone are pyramid (a card game), Angry Birds & Friends, 1010, 2048, and Two Dots.


PicCollage & Canva

I find these two apps great for making graphics and editing photos for my Instagram, iMovie (for IGTV/YouTube content), my blog and collages to print on my Sprocket. I find the free versions of both apps still offer me plenty of features to create/edit graphics and photos.


iMovie

This is the app that I use to create all of my videos for YouTube and other projects.

Clipomatic & Clips

These apps I use to add subtitles/CC mainly for Instagram and IGTV (Instagram TV) as I aim to be as accessible as possible online


Pinterest

I mainly use Pinterest on my laptop or my iPad but I always find it helpful to have Pinterest in my pocket.


Health Apps

Symple

This is a great app to monitor and rate symptoms throughout the day as well as adding in factors that may affect your symptoms, for example 'cold weather'. There's also a journal section to make notes.

Medisafe

Screenshot of my Medisafe app with a pink header and digital square pill boxes. Inside each box in an image of with the pill looks like. Each pill box is labelled, morning, afternoon, evening, night. Some of the tablet images have ticks next to them showing that I have taken them.This is a medication app. On it it has all the medications I take - regular and as-and-when-needed (PRN) medication. With my regular medications at say 12pm it alerts me repeatedly over a set time period and it tells me which of my medications I need to take and I mark off when I've taken them. The app then can give you a report on your medication adherence.

With my memory problems I find this app helpful alongside my alarmed pill box and the dosset box that the pharmacy deliver my medication in. Most of all it helps me with my PRN medications as I'll mark what and when I've taken it so if I need a second dose I know when I last took it so I can then know when I can next take it e.g. 4 hours between paracetamol doses.


My Water

This is another really helpful app to monitor my fluid intake. I set my daily target of how much I want to drink each day and each drink I have I add it into the app so 'coffee, water, herbal tea' etc. It will then tot-up during the day how much fluid I'm taking in so I know when I've reached my target or more-often by how much I've gone over my set target.

The app also regularly reminds you during the day to drink.

Tuesday, 13 July 2021

How to create a skin care routine with a disability

Okay, so I'll be the first to admit that I need to get into a better and more regular skin care routine as quite often when you have a disability everything is about priorities and prioritising what is the most important things to spend my energy on. Saying that there are ways and things I have done to simplify my skin care regime so I am able to have a daily skin care routine that is manageable to do alongside my disabilities. I am getting better at cleansing my face at least once a day when I'm well enough.

My advice is if you do struggle especially with fatigue is to just have a simple skin care routine that works for you; you don't need to use lots of different types of fancy products to look after your skin. Like for example I don't bother with eye cream as it's one less things for me to do and my eyes are perfectly fine with me not using eye cream.

For me I do rely upon my PA for the 'big' things in terms of personal care like having a bath (which I prefer and find easier than showering unless I'm needing a 'quicker' wash) and sometimes when I am in the bath I'll wash my face or if I'm getting tired I'll get my PA to do my face for me just to save that little bit of energy if I don't have it or if my hand are out of use because they're in spasm for example. So  PA will wash, exfoliate it, spritz it etc and if I want to apply a face mask and rinse products off etc.

So twice a week in the bath I'll wash my face with foaming face wash (sometimes if I'm having a good day I'll wash my face at the sink and use face wash) and every-so-often if I feel my skin needs it I'll use exfoliator. I then use a rosewater toning spritz spray and let my face air dry before putting on moisturiser. If it's a day where I haven't washed my face with face wash I'll use cleanser and take that off with a reusable cotton pad and then spritz my face and put on moisturiser. Depending on what time of day I get around to doing this if it's before bed I'll use a nighttime moisturiser; if I've washed my face in the day I generally just use Aveeno moisturiser. If my face is oily I might put some talc on my face, usually my face is the most oily when I wake up. I also have some serum for when my face breakouts with spots.

I find just using these few product manageable in terms of how much energy it takes me to do my skin care routine and I find only using three products on my face - face wash/cleanser, toner and moisturiser just fine. I know some people have a lot more complex skin care routines than I do but this works well for me and my limited energy.

If I'm not able to do this; for an even quicker skin care routine I'll just use a face wipe from the Botanics range and then use moisturiser. So I do have some flexibility in how I can cleanse my face daily depending on what kind of a day I am having.

I like to use the Boots Botanics products; mostly I use their organic range but some products aren't in that range so I'll use another range in the Botanics collection. I've just found that these products are the best for my skin.

Occasionally I'll indulge in a bit of self-care and put a face mask on which I enjoy. I've collected a few some gifts or freebies. I have a mix of packet/tube face masks and sheet face masks; I prefer the latter. I've also used under-eye mask patches which I've received when I used to subscribe to Birchbox and from when I used to get my monthly Birchbox I do have the odd face products like I have a nighttime face mist which I use and the night moisturiser I'm using at the moment is out of a Birchbox.

To take off makeup (a) depending how much I'm wearing and (b) depends on how tired I am to take my makeup off and cleanse my face. I will use eye makeup remover (from the Botanics range though I'm using one from my Birchbox currently), then I'll use a face wipe then I'll either wash my face and/or use cleanser. I'll use my spritz then finish off with night moisturiser.

These reusable cotton pads I actually make myself and they are a must-have in my skin care routine. I gave some to my PA and her and her daughter love them too.  With my reusable cotton pads I'll use them for a few days rinsing them out after use and hanging them to dry and then I'll put them in the wash. I sell them in my Etsy shop or if you can crochet here's a tutorial for them. They are much more environmentally friendly than single use disposable cotton pads though I've found they don't work unfortunately with liquids so I still occasionally do use the odd disposable cotton pad here and there but very rarely, probably only when I use eye makeup remover or nail polish remover and similar liquid products.

Tuesday, 6 July 2021

Calling myself disabled

I have a list of chronic illnesses which I have been diagnosed with. None have a cure and they will now be in my life to some degree in one way or another for the rest of my life.

The definition of chronic illness goes as follows:

"Chronic conditions are those which in most cases cannot be cured, only controlled, and are often life-long and limiting in terms of quality of life."  - NHS Wales

Every moment of my life and the decisions I make involve taking my illnesses into consideration and they have redefined how I see myself and how the world sees me, both positively and negatively. 

Now I move onto the word 'disabled' - dis abled. How you are unable to do something. Here is the dictionary definition of disabled: 


According to the Government...

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

What ‘substantial’ and ‘long-term’ mean

  • ‘Substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed

  • ‘Long-term’ means 12 months or more, eg a breathing condition that develops as a result of a lung infection

            - Definition of disability under the Equality Act 2010, GOV.UK

So, by definition under law, I am 'disabled'.  


The journey to disability

When I first became unwell it was just a few symptoms which gradually worsened and grew in number but I just put them aside and hoped that it would just be a temporary thing.

For a number of years my symptoms were classed as 'medically unexplained' though certain diagnosis' where mentioned. I did have other illnesses such as asthma, allergies and a spinal curvature which I've has since I was a child but I never saw them as an illness that I had - they where just there.

Part of beginning my journey into the world of chronic illness was (a) accepting my now situation with my symptoms and (b) becoming part of the chronic illness community and being around others with the same symptoms as me made me see that I was chronically ill. This was also coupled with the acceptance of my health situation and knowing that it wasn't going away any time soon.

Getting my diagnosis' helped me a lot. Finally I knew what was wrong with me and non of it was me having done something wrong. Grief then struck in even more fully knowing that my illnesses was something that I was going to have to live with and get used to and that I'd have to learn how to live with them. It was then that I began to class myself as 'chronically ill'.

It took me a little longer to call myself 'disabled' and this was a gradual process. I was dis-abled by my symptoms and illnesses; I was less able to do certain things.


What makes a person 'disabled'?

We've already explored the definition of disability under the Equality Act 2010, but who decides if someone is 'disabled'. 

Is it the government when they decide you're entitled to be in receipt of disability benefits such as PIP? - Personal Independence Payment (the new name for Disability Living Allowance), the money to help you cover some of the 'extra costs' that come when you have a disability. 

Or is it your local council when they deem you to be entitled to a Blue Badge so you can park in disabled parking bays or issue you with a Disabled Bus Pass? (Both often decided on the points you receive on you PIP entitlement though with Blue Badges new changes have been brought in to widen out who can be in receipt of one.


Calling myself disabled

This came as a gradual thing. I started to feel more dis-abled and restricted in an abled society especially when I'm out in my wheelchair. I also found myself needing to use disabled/accessible toilets and changing rooms and I needed someone with me whenever I left the house both. 

Though I'd left the chronic illness community which I felt was more of a negative environment that a positive and supportive one I felt more surrounded disability; maybe unconsciously trying to find people like me. I followed certain disabled people on Instagram and watched disabled YouTubers. 

I felt comfortable with the idea of disability and seeing myself as disabled and having disabilities. 

I now call my illnesses 'disabilities' as that's how I see them as that is how they affect me in life. I also find that referring to myself as disabled or letting others know that I'm disabled helps as it prepares them and it means that accommodations for my needs can be made.

I now feel happy and confident to call myself disabled.

Thursday, 1 July 2021

July’s Monthly Make - DIY Craft Kit

For this months make I’ve gone for something a little bit different and I’m showing you how I put together my DIY craft kits. 

I find my craft kit boxes super handy to keep everything together so that when I want to do some card making I've got everything I need all in one box. I have several different boxes often based on different card making collections or occasions or themes.

In the video below I'll show you what I keep in a unicorn themed craft box and how you can make your own DIY craft and card making box.

Some of the things I put in my boxes include:

  • Patterned and plain (including special effect) paper and card
  • Die cuts
  • Stickers
  • Sentiment stickers/die cuts
  • Stamps
  • Ribbon
  • Adhesive gems and pearls
  • Glitter glue
  • Blank cards and envelopes
  • 3D double sides sticky foam squares/3D foam tape
  • Double sided sticky tape
  • Velum
  • Acetate
  • Thinks to make shaker cards
  • Embossing folders
Though of course you can add whatever you wish

Wednesday, 23 June 2021

Surgery, my birthday & a life update

Apologies for sharing this post not on my usual Tuesday posting day. It's taken me longer to write this than planned.

I generally share topical posts but every-so-often I do share life updates and I haven't done one for a while and there's been a few bits going on in my life so I thought now would be a good time to share a life update post. There's a lot to update on but I'll try and keep this post as short as possible whilst still trying to fill you in.

So for a while now I've been waiting for orthopaedic surgery on my toes but due to my EDS (Ehlers-Danlos Syndrome) local anaesthetic has little effect on people with the condition so I'm going to have my toe surgery under general anaesthetic. I could have had it done about a month ago but I was taking antibiotics at the time as I keep having reoccurring infections on one of my toes and I had to be 3 week clear of antibiotics to have my surgery. So anyway I got a call from the orthopaedic admin lady and she explained that she'd been thinking of me over the weekend (which was lovely to hear) and rather than waiting for a slot she decided to book me in so I could have my surgery as soon as possible. Unfortunately the date she booked me in for was the 16th June - the day before my birthday 😕 

It's Tuesday (15th June) now - I'm writing this post in littles bits giving little updates (I normally compare blog posts in little bits here and there anyway). I'm just waiting for my PA. The plan today with my PA is to pack an overnight bag to take into hospital 'just in case' as if I was to be admitted due to COVID no one would be able to bring anything to the hospital for me.

So I've had my surgery, unfortunately I had to stay in over night which was my birthday so it was a bit rubbish having to spend my birthday in hospital. The surgery went okay though there where some complications plus I was a 'complex case'. The anesthetist was lovely and spent a lot of time with me and use the smaller paediatric equipment to avoid dislocating my jaw and he really really listened to me about my illnesses and how they they affect me and also how they will affect my surgery such as managing my pain post-op and and reducing my dislocations etc.I was quite poorly in theatre recovery but I was well looked after. I now have the district nurses coming to do my dressings which helps me out a lot.

I got home from the hospital around 7pm and I still felt nauseous from my surgery so I didn't feel up to eating my special birthday tea (bangers - aka sausages, mash and beans) but I did feel up to eating a little ice-cream as my throat from being intubated in theatre. Mandy had found some salted caramel vegan ice-cream (which was very yummy by the way and you can find it in the co-op). Whilst we was eating the ice-cream I opened my gifts from my Dad, Mandy and my brother. 

Then the next day, Friday (18th June), I had a restful morning and I opened the gifts from friends that day and I was filled with so much gratitude and love at how carefully chosen all my gifts where.

One life positive is that I now have a PA; she started at the end of April so we're in a nice routine now and the help is fantastic and we get on so well. We can have a laugh but she's very professional and supportive and is great with dealing with everything.

I'm also awaiting for an assessment with adult social care and I'm really really hoping that I can be given some sort of a care package. I did get given a care package back in 2019 just before I went to Leeds but when I got discharged and reassessed last year it was taken away and I never even started using the care package. I've tried several times in the past to get a care packaged but I never even got an assessment so fingers crossed and I know that my current PA will support me as much as she can which she's said she will do as she can see how much I'm struggling what with her being the professional who sees me the most.

So all-in-all health wise I'm struggling. My health is worse especially my M.E which my neurologist thinks that lack of care both due to COVID and also not having a carer where two bit factors but I have his support and now my PA too.

My extended birthday has been enjoyable and Mandy made me pancakes for breakfast (today is the 23rd June) so I said that it was a belated birthday breakfast and made up for my birthday tea.

I find special occasions like birthday's hard as it feels like another year passed in which I've been ill and all that comes with it and another year ahead of the same challenges but I'm trying to focus on the positives as much as I can though I do sometimes especially at the end of the day feel down and 'sick and tired of being sick and tired' but my friend Ruth has a lovely quote "just keep swimming and when you can't swim just float" and I know that it's okay to float for as long as I need to and that I have some amazing people in my life now that I've come to know who also having health challenges that I can turn to.

I've been making thank you cards for everyone who's sent me cards and gifts so that's kept me occupied as does my letter writing. I'll leave this post here as I think I've given a sufficient up date.

Tuesday, 15 June 2021

Let's talk about Loneliness

   - Marmalade Trust -   

This week is Loneliness Awareness Week; it's a topic, especially as a disability blogger, that I feel needs talking about. 

As the image from the Marmalade Trust says, everyone will feel lonely at some point but not everyone experiences loneliness.

It's a bit like depression. Everyone has felt a bit low at some point in their life but not everyone experiences or goes of to develop clinical depression.

This year I wanted to write and share with you my own loneliness. Being house and sometimes bed bound I have faced a lot of isolation and loneliness since I became ill. 

I only leave the house usually when it is necessary such as for medical appointments, so little chance to socialise. Very occasionally I do go out for fun things such as a drive-thru coffee trip as I did recently with my Dad on the last Bank Holiday Monday. 

Leaving the house has to planned, I rest for days before just to cope and then usually I have limit my time out and then once I'm home my body just crashes from the burnout of going out.

I only have one local friend but I haven't seen her in person for at least a year and half due to my health worsening. A friend coming round to the house is still exhausting for me, talking and listening tires me out and I just wish that my body and mind would allow me more time with my friend and I wish even more-so that I could travel to meet some of my other friends who I have gotten to know over the years.

A giant notice board with coloured lights around it. The notice board is filled with cards, postcards and other items.
My main comfort from loneliness is in the form of letters from friends and being part of the Chronic Warrior Collective.

Hearing from friends through a letters gives me that connection to the outside world. I love hearing what my friends having been doing and about their lives. For me letters fill that loneliness gap in my life; they remind me that I am not alone and that I am loved and cared about. Equally replying to letters also eases my feeling of loneliness and I know that for some of my friends who I write to that my letters will equally ease their own loneliness and isolation due to being house/bed bound themselves due to their own challenges with their heath.

Equally if you know of a friend who is experiencing loneliness and isolation for whatever reason - it could be due to illness, bereavement, a relation breakup, those shielding during lockdown, people who live alone, moving home or to University as a few examples. Reach out to those friends; let them know that you are thinking of them and that you are there for them. You could write to them or even just a text goes a long way to let someone know that they are thought of.

Here is some advice from Lets Talk Loneliness on what you can do to ease your feeling and experience of loneliness:

(This is just a brief summary but if you click the link above ⤴︎ it goes into more detail)

⭐️ Keep in touch with the friends and family around you 
⭐️ Join online groups, these could be forums, social media groups, virtual get togethers on video link (some charities and have moved their face-to-face support groups to become virtual groups which is great especially if your nearest support group is still a long way to travel to. For me I've found this great due to me being housebound.) - Some religious groups have also moved their get togethers for worship via video link.
⭐️ Help other who are experiencing loneliness
⭐️ Contact helplines that support those experiencing loneliness 

Link to organisations & charities:

⭐️ Marmalade Trust - The organisation that leads Loneliness Awareness Week
⭐️ Lets Talk Loneliness 
⭐️ WellbeingInfo.Org
⭐️ I Will - Loneliness in young people
⭐️ Scope - Disability charity // Loneliness search


Some online groups and forums that may interest you:

Tuesday, 8 June 2021

My Quaker faith & my first Meeting for Worship

So my faith has been something that I haven't touched upon yet on my blog but my faith plays a key part in my life. 

Several years ago I felt that there was something missing in my life. I know about holistic wellbeing and I was attending to my physical, emotional, intellectual, cultural etc needs but I realised that my spiritual wellbeing aspect of my life was missing. When I realised that I set about searching for my faith and I delved into looking at some of the different religions that where out there to see what each one was sort-of about.

As a child I was brought up as a Christian; as a family each Sunday we went to church and I had a Christian upbringing such as saying grace before eating, saying a goodnight prayer, not swearing or blaspheming etc. But when I became a teenager I turned away from religion.

When I began to search for spirituality in my life again my Dad, a Christian himself, steered me towards Christianity but there are so many denominations I struggled to know which was the right one for me. Again my Dad guided me and I ended up going to a non-denominational church which was quite upbeat and modern compared to the more traditional Methodist church my Dad and step-mum go to that I'd gone along to but I didn't feel that church was for me.

I had connected with someone the "younger" adults at church through our weekly get togethers to chat, worship, sing and study the bible etc as well as sitting with them at church on a Sunday. However, as time went on many of that group got married and started families and those more my age helped with the kids church so I began to feel very lonely at church despite being in a room full of people. My attendance was also sporadic because of my health and there were incidences of my having seizures which weren't ideal. I don't like fuss and having a seizure in the middle of church creates fuss. There where also things I felt uncomfortable with and I also didn't feel that there was any room for my own spirituality and beliefs - I felt like I was being told what I should and shouldn't believe and sometimes this clashed with my own thoughts on certain topics. Then as my health worsened I reached the point where I became housebound but by that point I'd already pretty much stopped going to church but I still felt something spiritual in me.

After a period of time I came across Quakerism through a YouTuber who's video's I like watching and I learnt a little about Quakerism from her videos - Jessica Kellgren-Fozard: Quakerism 101

I began to become interested and wanted to know more. I enquired more about Quakerism and I contacted Quakers in Britain who sent me a bunch of literature to read and which was really helpful along with watching Jessica's videos and also listening 'A Quaker Take' podcast (by Quakers in Britain) to understand Quakerism a little more and it did seem like it was what I was spiritually looking for.

Not long after I was then in hospital for 6 months and I made good use of the hospital's chaplaincy team who were so good and we talked but also spent time sitting quietly together as Quakers do when they meet for worship.

Once I was home I got in touch with my local Quaker group and as due to the coronavirus situation they weren't meeting for worship; instead on a Sunday we was just meeting on Zoom for a social chat which really helped ease me into Quakerism especially as on reflection if I went straight into Meeting for Worship it might have been too full-on. In the social groups I was able to ask questions which we discussed such as Quakerism and Christmas and at Easter.

With Quakerism it's not about definitive answers but more about seeking (if that makes sense?!) everyone's views and take on matters are different and we respect one another and don't judge. The core principles or values of Quakerism are: Equality & Justice, Peace, Truth & Integrity and Simplicity and Sustainability  - you can find more out here.

After a while some friends (how Quakers refer to one another) from Grimsby where joining another Quaker meeting's for worship on zoom but I didn't feel ready yet to meet for worship.

Then this week I messaged someone I knew to ask if his Meeting House was still facilitating worship on Zoom so he put me in touch with the lady who co-ordinates the virtual Meeting for Worship. So I emailed her earlier in the week and I explained a little about my journey towards Quakerism and how I now felt ready to meet for worship on zoom.

So that's brought me to today (Sunday 30th May). I finally joined my first Meeting for Worship via zoom. There were other who where there on zoom and one laptop in the meeting house where others had come to worship in person. I found it easier to have my camera off and we all had our microphones off too so background noise didn't disturb anyone. I also thing Meeting for Worship on zoom was another step to help ease me in.

I'm still very new to Quakerism so I'm not an expert in the ins and outs of things but when Quakers meet for worship we sit silently together - when Quakers worship in person they sit in a circle or a square rather than traditional pews like you'd find in a church. Usually when there's not a pandemic a Meeting ends when two people shake hands. In today's Meeting for Worship some people did speak - this is called giving ministry. (I'm still learning these things).

I was worried if I could manage the whole hour of worship but I surprised myself and I got a lot out of it both personally but also sharing worship with others which all-in-all obviously helped me spiritually.

It was a big step for me to feel brave enough to join a meeting as it's something I'd put off doing for a while as it felt quite daunting but it's wasn't half as challenging as I imagined and I now look forward to more meetings. My hope is that when I feel well enough and also safe enough given the coronavirus situation that I can Meet for Worship at my local meeting house.

Spiritually I feel like Quakerism is the right faith for me and I'm happy to say that I'm a Quaker. I now enjoy declaring on forms like on my medical records and the census that I'm a Quaker. More often than not I get asked what is Quakerism, like when I went for my pre-admission assessment for an operation that I'm having in a few weeks. My Dad always jokes about Quaker Oats but I can firmly say that my faith has nothing to do with oats, and no we don't dress like the man on the Quaker Oats logo!

Tuesday, 1 June 2021

June's Monthly Make - Cat Coaster

A granny square is a crochet essential and once you get the hang of how to make one you can make all sorts from blankets to bags to clothes.

Difficulty level: ★  ☆ ☆ - Easy

In this tutorial I'll use treble crochet (UK terms - double crochet in US terms).

You will need:

  • Yarn
  • Crochet hook in the size specified by your yarn
  • Scissors
  • Yarn needle

Abbreviations & Stitches you'll need to know

(Don't worry in the video I will show you how to do the different stitches and how to do a magic circle)

CH - Chain
SL ST - Slip stitch
HTR - Half treble crochet
DC - Double crochet
TR - Treble crochet

(All UK terms)

Instructions

Round One

Make a magic circle and in your magic circle do 6 htr. Close your magic circle and sl st into the fist htr

Round Two

Ch 1, 2 htr in each of the 6 st, sl st into the first ch

Round 3

Ch 1, 2 htr into first st space, 1 htr in next stitch space, sl st into the first ch

Round 4

Ch 1, 2 htr into first st space, 1 htr in next 2 stitch spaces, sl st into the first ch

Round 5

Ch 1, 2 htr into first st space, 1 htr in next 3 stitch spaces, sl st into the first ch

Round 6

Ch 1, 2 htr into first st space, 1 htr in next 4 stitch spaces, sl st into the first ch
(Do not tie off just yet!)

Ears

In the first stitch space 1 dc and 1 htr
In the next stitch space 3 double tr
In the next stitch space 1 htr and 1 dc

Sl st in the next 8 stitch spaces

In the first stitch space 1 dc and 1 htr
In the next stitch space 3 tr
In the next stitch space 1 htr and 1 dc

Sl st and tie off

To finish weave in your ends with a yarn needle

Video Tutorial



Tuesday, 25 May 2021

Finding ways to keep doing the things I love

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My health and symptoms greatly affect me on a day-to-day basis and as a result I've had to find new ways to adapt or change what I do to allow me to continue doing the things I love and enjoy.


Activities I love

Books & Reading

I used to love reading but I now struggle to do that both in terms of being able to see the small text but also at time being able to hold a book. I now access books as audiobooks which on my bad days when I'm not able to do much can be a bit of a life line. I also enjoy listening to podcasts an occasionally the radio. I enjoy the conversation and podcasts and the radio give me that connection to the outside world.

Also recently I started to read just a little on my phone where I can read in large print as well as turn on the screen colour filter which helps with my Scotopic Sensitivity and my pop socket on the back of my phone helps to make holding my phone easier.


Letter Writing

Letters to friends and pen pals is my way of being able to socialise. Writing can be difficult visually, cognitively, practically and it can also be tiring. Sometimes I  can only manage a short letter or postcard other times I can write a bit more. I tend to write or type here and there a few sentences at a time as writing a whole letter in one go is too much of a challenge.

Sometimes I use a voice activated software called 'Dragon' to dictate which helps with the hypermobility in my fingers and wrists as it gives them a break but this is a balancing act as talking can be quite tiring for me to do. A good computer set up is also essential such as my beanie wrist rest and tilted laptop stand to name a few things. 


Blogging & Vlogging

I love blogging and I've now started my own YouTube channel too. Planning out posts and video ideas in my bullet journal help a lot.

Outwardly my blog is nice and neatly organised but I have a lot of draft posts behind the scenes. On these draft posts I'll jot bullet point idea down and type a paragraph or two at a time until a post is ready and then I will schedule for it to auto-publish on Tuesdays. 

I've managed to bank up enough draft posts for a while now which has allowed me to have regular publishing days which I feel really proud and accomplished about.

The same is similar with my YouTube channel. I plan videos and film when I'm filming well enough on one of my 'really good' days and edit here and there until I'm happy with the video. I'll then upload it and add subtitles (which I do to try and be as accessible as I can for viewers). Like with my blog I'm trying to bank up videos and currently I'm a few videos ahead so currently like with my blog I've been able to make alternate Friday's my publishing day (it used to be weekly but I'e had to revise this) for the time being but I'll see how I go along and if I'm able to keep up with this.

Unfortunately that is the nature with having disabilities is the unpredictability and not know when you'll have a really good day to be able to film and the have the energy to edit and upload onto my YouTube channel. I love being a YouTuber but my health is so unpredictable and I have to prioritise and work out what is most manageable for me so that I still enjoy vlogging without the pressure and continuing to enjoying having a YouTube channel.


Aids, Adaptations & Other Things

These help me to continuing doing the things I love. Like I mention I use software like Dragon; I also use a mind mapping software called Inspiration to plan as well as my less technical bullet journal though I do handwritten mind maps in my bullet journal too.

If I've handwritten a letter or done some typing I find wearing my splints help to support my wrists so they can rest and recover afterwards especially if they're getting a bit floppy or strained.

I also find timing activities helpful as when I'm doing something enjoyable as we all do we can get a bit lost in what we are doing which for me can result in me over-doing it and end up 'crashing' or 'flopping' and my pain, fatigue and other symptoms worsening. Regular breaks and rest periods and also help whether this be a short break mid activity or one of my scheduled rest periods as part of my Daily Plan.