Tuesday, 27 July 2021

šŸŽ§ Shuffle Playlist

Just as a different post from the usual to shake things up a bit I thought I'd share with you a shuffle playlist of some songs I like that are in my music library. My music library has such a random collection of songs of different artists and genre's so I hope you enjoy listening to some of these songs if you're feeling like listening to something new or different. As it's a shuffle playlist the songs are in no particular order but I am loving Fight Song and I love the lyrics to it so I have put the music video to that song below.

  1.  7 Years - Lukas Graham
  2.  My Silver Lining - Fist Aid Kit
  3. Fight Song - Rachel Platten
  4.  Simple Song - The Shins
  5.  Map of the World - Monsters of Folk
  6.  Call Your Girlfriend - Ashleigh Brown
  7.  Shake it Out - Florence + The Machine
  8.  Beauty Queen - Ben's Brother
  9.  Love Story - Taylor Swift
  10.  Speechless - Naomi Scott
  11.  Take Me To Church - Hozier
  12.  This is War - Thirty Seconds To Mars
  13.  Radioactive - Imagine Dragons
  14.  In Your Dreams - Dark Dark Dark
  15.  Rhiannon - Fleetwood Mac
  16.  Brand New - Ben Rector
  17.  Goodbye Mr A - The Hoosiers
  18.  The Fear - Ben Howard
  19.  No Body, No Crime - Taylor Swift ft. HAIM
  20.  Give Me Strength - Snow Patrol
  21.  Fiction - The xx
  22.  Young Folks - James Blunt
  23.  Running with the Wolves - AURORA
  24.  Believer - Christina Grimmie
  25.  The House is Burning Down - Patrick Park
  26.  Rebel - The Unkown
  27.  Home - Ellie Goulding
  28.  The Miracle (Off Joey Ramone) - U2
  29.  Monster - The Automatic
  30.  Running Up That Hill - Placebo

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

Skin care routines when you're chronically ill

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