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.

Tuesday, 18 May 2021

What my bad days look like

A subscriber suggested, if possible, that I write on one of my bad days to give a glimpse into what one looks like. Unfortunately on my bad days I'm unable to pick up and write a blog post; I'm not even able to write a whole blog post on a good day as I can only write paragraphs here and there as that's how I've adapted to be able to blog.

I can have bad days for a variety of reasons. It could be due to 'payback' or Post Exertion Malaise which is a classic symptom of M.E and is a exacerbation of symptoms often brought on following an activity, even minor activities such having a bath or going out for a short walk in my wheelchair with my PA. A bad day may also be the result of me having a migraine or a seizure for example or if I'm having a bad day with pain levels or if I've had a night of broken sleep; again sleep problems are very common for people like myself with M.E. 

On my bad days it's a bit like trying to hold two positive magnets together with the resistance when trying to connect them together. This is what my whole body as well as my mind feels like on a bad day. My mind and body resist moving, thinking and doing. Everything is a struggle everything I try and do worsens my symptoms and leaves me feeling worse and worse the more I try to do things. This often makes me feel like I'm trapped in a mind and body that I have no control over.

My bad days are often spent laid in a darkened room with minimal noise. Audiobooks are a bit of a life-line; especially on my bad days. I need to be in the dark and quiet as noise and light along with other senses like the weight of my duvet are physically painful. I'm also in a lot of pain which I feel in every part of my body. My joints and muscles and nerves all cause me pain; sometimes even my strongest pain relief or other medications don't fully relieve my pain. I can also feel so exhausted that I want to cry but despite my high levels of fatigue and exhaustion sleep doesn't help.

On my bad days I rely more on the help of my family and PA to help me with some of the most basic of everyday tasks stripping me of my independence which can be difficult especially as a young adult.

One of the big challenges is trying to recover from a bad day, so more often than not I don't really have a singular bad 'day' it can go on for days sometimes a week or so depending on the reason for what has caused the 'bad day'.

Model Kate Stanforth with painted wire on half her face. Text reads "trapped living with a condition that limits every aspect of your life".

Tuesday, 11 May 2021

Tips for living with M.E - M.E Awareness Week


Living with severe M.E comes with many challenges. Alongside dealing with the symptoms and medical side of the illness including juggling health and social care services which at times often leave you feeling let down, something I know for my own experience, there is the social and emotional aspects of the illness that can be challenging. Often you feel isolated as you're not well enough to go out and meet a friend for coffee for example or you may struggle to even see a friend at home as conversation can be tiring to do. I have, despite having severe M.E myself found ways to learn to live with the condition so here are some of my coping tips.


Make your bedroom a cosy happy space

Making your bedroom a cosy space makes it I find a nice place to relax and enjoy being in. This can include things like having bedding that you love, and putting up fairy light and having photographs on display. Most of all I love my giant notice board where I put up all my mail sent to me by friends and pen pals. It's nice to things on display that make you smile when you look at them. I'm also a person who love sensory things so I have my aromatherapy diffuser and also a Mathmos Space Projector both of which I find calming and relaxing.


Keep your bed tidy

Photograph of a grey pocket organiser tucked under a mattress. Inside some of the pockets are a variety of every day items.

Often my bed has a lot on it as a way of being able to keep things to hand but I've found that having a clear bed makes it a more relaxing space.

As a way of keeping your bed tidy you might find it handy to have a pocket organiser which you can tuck under your mattress. This way you can keep everything that you need to hand without cluttering up your bed.


Organisation

Being organised can really help. I can't profess to be the most organised person but I've found that trying to be as organised as possible can help. This includes keeping the floor space clear but also have some sort of organisation in how you store things in wardrobes, draws and cupboards.

I've found labelling boxes, cupboards, draws etc helpful so either myself or others know where to find things. I also find having sections for things helps - you can see and example of how I do this in my YouTube video 'How I organise my craft supplies'.


Have a schedule

Photograph of a magnetic board with a time table with magnets with times on and colourful magnets that make up the time table. There are also written notes on the time table. Also on the magnetic board is a pen and some magnets.
One of the things I did with my occupational therapist was to create what we called a 'daily plan'. This is a schedule for the day with alternating activity and rest periods with other slots for things like meals, appointments, physiotherapy and winding down for bed. 

I find having a schedule helps give my body predictability and it helps me with activity management and pacing.


Plan

As well as my Daily Plan planning in advance hugely helps to try and minimise as much as possible the payback PEM (Post Exertion Malaise) or PENE (Post Exertion Neuro-immune Exhaustion) - the latter affecting me more. 

So as an example when I went for my pre-admission assessment at the hospital (which was on a Tuesday) I planned a restful weekend and Monday. I also had my COVID vaccine that week so I requested that to be on the Friday to allow me a couple of days to rest and recover. It didn't stop me experiencing a flare-up in symptoms and PENE but it did help having that gap.


Learn activity management, pacing & grading

A pale lilac small book being help up. The title of the book is The Pocket Book of Pacing and it has a stickman illustration on the cover.
These three tools are pretty essentials to living well with M.E whether you have mild or severe M.E. These tools I find help me manage my symptoms and allow me to engage in enjoyable activities both on my good and bad days even if it's a really bad day and all I can do is lay listening to a book.

Here are some of my previous blog posts on this topic: 'Pacing', 'Pacing, Activity Management and Rest'.

Hannah Ensor has writing a great book on pacing which I'd recommend; It's called The Pocket Book of Pacing. I'd also recommend the pacing post-it notes for planning your day/to-do list.


Finding ways to do the things you enjoy

Finding ways to adapt on how you can continue to do the things you enjoy can be immensely helpful. For example if you enjoy reading but struggle to read you may prefer to listen to an audiobook. Or if you enjoy writing to pen pals it may be easier to type letters rather than write by hand.


A caucasian woman with brown hair wearing a white top laid in bed listening through some headphones. The bedding is orange and green.
Audiobooks & Podcasts

I've found audiobooks and podcasts a bit of a lifeline. I struggle reading so audiobooks are a lot more accessible for me. I also find that they're good for my bad or rest days as I can just lay in bed or sit in my rocking chair and just listen to a book. Again audiobooks help pass the time and there are lots of different places where you can get audiobooks from. I personally use the RNIB library but I've recently been recommended some other places where I can get audiobooks from.


Start a project

I find projects help give me something to focus and work on and it's nice to see my project grow and develop. This is partly why I started this blog and now I've moved onto also keeping a YouTube channel. I also have my photo journal and my One Second Every Day project  As well as that my other project is my BSL (British Sign Language) course; it's making me longer to do than planned but it's nice to work on when I can.


Write letters

A red postbox with a colourful array or envelopes and postcards being held up ready to be posted.

Writing pen pals are a great way to "meet" new people and devolve new friendships and to "socialise" with the people you write to. I love letter writing to both my pen pals and my friends (I see it as my version of sending a text) and reading letters hearing about my pen pals lives and reading what they've been up to and our common interests that we discuss. Just as equally I love replying to my pen pals and putting letters together.

If you don't feel able to commit to writing to pen pals you could join the Chronic Warrior Collective's monthly Card Swap which each month you can opt in or out of and you only commitment it to send one piece of mail to someone and in return you will receive something from another member of the swap.

Try and experience to outside world

Often when gong out is limited it can aid that isolation from the outside world. When I was in my long hospital admission I liked having a bird feeder which what stuck to my window and I liked watching the birds. I also like people to send or give me postcards such as when my Dad and stepmum have been away or from pen pals of the places where they live or have visited. 

If you are able to on a nice day try and sit outside if you can, even if it's just for 5 minutes, or get someone to take you out for a short walk to get some fresh air.


Practise self-care

Self-care is so important for or wellbeing; it helps us physically, mentally and emotionally. I feel personally that self care is even more-so important when you have a chronic illness. I talk more about this and self-care in this blog post which I wrote for Self-Care Week: 'Self-care when you're chronically ill'.

Along the topic of self-care I'd also recommend getting into the routine of practising mindfulness on a regular basis.

Other aspects of self-care is making yourself feel nice so this could be using your favourite toiletries, having a skin-care routine, putting on some makeup, learning different hair styles and putting on your favourite clothes or pyjamas. I have been known to spend the day on my bed wearing my favourite vintage style dress just because I felt like dressing up nice.

Also, don't compare yourself to other people. I'm guilty of that myself seeing people around me doing an achieving the things I'm wanting to do and achieve myself including those I know which M.E or other chronic illnesses. But our circumstances are uniquely our own and everyone is on their own path. Equally what we see especially on social media we have to remember is a carefully selected snippet of people's lives and we don't see or know the full picture of what that person is sharing, or even if what they are sharing is true.

Tuesday, 4 May 2021

The challenges of being hypermobile - HSD/EDS Awareness Month

Being hypermobile is a lot more than 'just being bendy' as a lot of people think is what Hypermobility Spectrum Disorder and hypermobile Ehlers-Danlos Syndrome is about.

HSD and hEDS are hereditary conditions connective tissue disorders. I've been diagnosed with both conditions and according to my care team, in my case, there is very very little difference and in any case people with both hEDS and HSD can experience the same symptoms, problems and complications. I personally just refer to it as 'my hypermobility disorder' plus his saves a mouthful words most people don't understand!

Connective tissue, or collagen, is like the 'glue' of the body. It keep joints in place and organs together. When the connective tissue is faulty as in the case of those who has HSD/hEDS people's joints are help in place as they should and organs become too stretchy causing secondary complications with the affected organs. For me my joints regularly sublux (partially dislocate) as well as fully dislocate which is acutely extremely painful, but it's something that I've had to learn to live with; I have joints that are more affected than others such as my right shoulder (as this is the main part of my pony where I experience non-epileptic myoclonic seizures so my arm jerks a lot.), my right knee, left hip and my wrists and thumb and finger joints. The more my joints dislocate the looser the joints becomes making it more easily to sublet and dislocate. As well as joint problems the main organs that are affected for me is my gastrointestinal organs, bladder and my heart.

Along side the acute pain my joints and surrounding tendons, ligaments and soft tissue I experience joint pain on a near constant basis to varying degrees. 

Two pages of a small book being held open. On the the left page it reads "... you say 'you're falling apart' and you mean it literally." On the right page of an illustration of a stickman with their arm fallen off and is on the floor.
   © Stickman Communications   

Aside from this is the day-to-day challenges. Just simple things like using a pen or typing, using cutlery or chopping food pose problems. I've found ways around this like taking regular writing and typing breaks and eating foods that don't required to be copped. I also use adaptations like adaptive scissors, pens and electric can openers and I'll cut packets open instead of prising them apart.

Wearing splints when needed also help and my physiotherapist is going to take to me about taking my joints to help give them more stability..

Every day is a challenge but as with most disabilities you learn to adapt and live with the challenges that your disability brings.

Saturday, 1 May 2021

May's Monthly Make - Woven Bracelet

May's Monthly Make is a woven bracelet using a circular weaving loom which I'll show you how to make

Difficulty rating: ★ ☆ ☆ ☆

You will need...

  • Cardboard - I just used some scrap cardboard that was part of some packaging
  • Pen
  • Something round to draw around like a mug or alternatively a compass
  • Scissors
  • String or cord - you could use embroidery thread or the hemp string that was used in February's Monthly Make - a macrame keyring. The hemp string is what I used in this tutorial.

Tutorial


The video on YouTube has CC - if you click the video it will take you to YouTube; there you will find other craft tutorials as well as other videos I've made.

Tuesday, 27 April 2021

Minimal effort ways to support charities

Charities do so much for you, whether it be scientific research into new treatments or understanding illnesses better, running helplines, raising awareness of illness and advocating for patients and supporting change, sending out care parcels, donating food and toiletries to those in need and so so so much more!

Thought my time being ill different charities have supported me in lots of different ways and I try to give back in any way I can. Like for example writing articles for their magazines or partner organisations (like when I wrote an article for the nursing times on behalf of Action for M.E). Charities have also been there for me when I've needed someone to talk to or to ask for advice through their helplines. I've also received care packages like the one that I received from Smile for M.E.

As much as I would love to hold a big fundraiser the reality is I can't and many people can't but there are many other ways that you can help support charities.


Become a Member

Birds eye view of a pile of magazines with the tile Fragile Links, next to the magazines is a cup of coffee and in the top right corner of the photograph is a green plant

One of the big pieces of advice that I give to people newly diagnosed is to become a member of a charity that covers your illness. 

That you pay will help support support that charity in the work that they do. In turn your membership will give you access to help and support. For example giving you access to a community of others with the same illness as you and other benefits such as magazines newsletters, and/or emails keeping you up-to-date with things such as new research projects, participation opportunities, stories from others members etc. You might also receive information on living with the condition, ways of coping with the different symptoms, treatment options etc.


Birthday/Christmas Gifts

Information leaflets laid down. On top is a card with a picture of a puppy wearing a purple jacket and text reading 'My Amazing Puppy'.There is also a cuddly toy puppy wearing a purple Canine Partners assistance dog jacket, there is also a photograph of a puppy waring a purple jacket.
An idea for a birthday or Christmas gift could be to ask for donations to be made to a charity instead. An alternative is to sponsor/adopt an animal for somewhere like a zoo, animal sanctuary or an assistance dog puppy.



Cards & Other Things

Christmas cards

Instead of purchasing your Christmas cards from the supermarket or a stationary store why not buy them from a charity? Most charities do produce Christmas cards for people to purchase and it's a good way to help give a little bit back.

Alternatively, and this is what I do, is what I'd pay in postage and to make Christmas cards I donate those costs to charity instead.

Stationary & other items to buy that support charities

Here are just a few shops I found for you to have a browse at but there's much more out there is you just search online for it, like I searched for 'charity shop stationary' (even I found some new websites!)


Amazon Smile

Orange background with word Amazon with it's arrow logo underneath with the word Smile next to it. Underneath this Amazon Smile wording is more text reading You Shop. Amazon Gives.
Instead of having a regular Amazon account you can have a smile.amazon.co.uk account and from there you can select a charity. Certain products will support Amazon Smile and a percentage of the item bought will go towards your chosen charity. You will also be told how much you have raised for your chosen charity per purchase and also in your spending total as well as how much your chosen charity has been given from everyone supporting that charity.

Charity Shopping

Purchasing an donating to charity shops is a great way to support charities and you can often find some great finds.

You can even go charity shopping online. My go-to charity shop is THRIFT+.This is an online thrift (charity) shop where you get to decide what charity you want to support with your unwanted clothes. Then in buying clothes (all great quality I've shopped there myself a few times) you get to support other charities in return - the charity supported by each clothing item is chosen by the donor of that clothes item. Donating to THRIFT+ is so easy, just order a donation bag, fill it and then drop it off at a collection point to be sent to their warehouse.


Tuesday, 20 April 2021

Video collaboration with Georgina for FND Awareness Month

Georgina and I got to know each other through social media. Like me Georgina has FND - Functional Neurological Disorder, and so we teamed up together for April's FND Awareness Month.

Together we shared our experiences and journey of having FND and that challenges and positives of having this illness in our lives.

What I felt was so helpful in this video is how Georgina and ! show just how different FND can affect two people despite having similar symptoms. For example both of us have non-epileptic seizures as part of our FND but our non-epileptic seizures couldn't be any different. Mine present as a more 'classic type' seizure whereas Georgina's non-epileptic seizures are more dissociative. 

As FND affects the whole brain is can result in a wide range of symptoms as Georgina and I share. We also chat about getting our diagnosis and the different support and treatment's we've had as well as the general fluctuations of the illness both day-today and year-to-year. Georgina and I also share that challenges of having FND especially when it comes to how often our illness is misunderstood.

The video...

Clicking the video will take you to the video on YouTube. Feel free to leave any questions or comments. You'll also find CC on the YouTube video too.

Thursday, 15 April 2021

Review: Dear Chronic Illness

Dear Chronic Illness Dear Chronic Illness by Pippa Stacey
My rating: 5 of 5 stars

I loved this book. It was very easy to read as I could read each person's letter to their illness one at a time. I learnt about different illnesses and could relate to people's stories on illnesses that we shared such as gratitude towards our illness for what it's taught us about life and ourselves but also the grief in what out illnesses have brought us taking away the plans we had for our lives from before we became ill and how we've had to learn and adapt to our new lives factoring in our chronic illnesses and disabilities. It's a book I would defiantly recommend people reading as there is so much emotion put into each letter and even if you're not chronically ill or disabled you can learn and understand about different chronic illnesses and how they affect people from reading this book.

View all my reviews

Tuesday, 13 April 2021

Gratitude for my disability

A white heart with twine to hang it up. on it is written I am grateful in black text with a red heart.
I am grateful for becoming disabled. Confused? Becoming ill has grown my gratitude for life. The small things now mean the big things and to be honest I'm not all too bothered about the big things, Things like a text from a friend, a walk in my wheelchair, getting my washing, a letter or from a pen pal all fill me up with gratitude and positivity.

When I look at the noticeboard in my bedroom I am filled with love at all the time and effort people have taken, many of whom have health struggles themselves, to write to me and send me mail and bits and bobs, or projects that bring a smile to people living with chronic illnesses/disabilities.

Being positive and filled with fratitde isn't easy when you're chronically ill. It's so easy to fall down a hole of negativity when you're body is throwing curveballs at you all the time and some days it does take a lo of effort to put a smile on my face and be positive.

My friend Ruth who I see as my positivity cheerleader whenever I get a message or letter from her has this quote: "When there is life there is hope" - Ruth S

And I have to hope that better and brighter days will come.

But I am grateful for my disability as so much positivity has come from it. For a start I wouldn't have started this blog, or my YouTube channel. I've also met such wonderful people who I now call friends and in life I now know who the true friends are in my life.

There has been many difficult time and days and I've cried a lot and at times felt let down, upset, frustrated and voiceless. Life with a disability isn't easy by no mean at all but it's made me the person I am today.