What I’ve been reading lately…

‘Politics On The Edge: A Memoir From Within’ by Rory Stewart

★★★★☆ 4/5 rating

This book I listened to. It’s a autobiography/meomoir book.

It was a bit slow to initially get into this book; I did have to take a break and then return to it once I had more concentration.

The book follows the author’s 10 year career in politics; how he got into politics and became and MP and rose up over time to almost becoming the next Prime Minister. He shares how the party he initially believed in changed over time.

As I read about Rory’s career in government it gave me a really good insight; one I’d not really seen before into the inner workings of my government. When he was Foreign Minister he spent millions on projects in subsaharan Africa yet when he was Minsters for departments within our own country he often struggled to get funding for projects such as to install body scanners in prisons and improve probation services, or to plant more native trees. It seemed absurd how much are government was spending in foreign countries and then spending so little on our own country. I was also surprised to read about how debt our government is in too.

It was also interesting to learn how new Prime Ministers are chosen too.

I already know from my A-Level Sociology that government is an ‘old boys club’ and that proved true. Most key figures in government in the book where old Eton students and there were few women mentioned in the book that were in government too.

Towards the end of the books where it gets to more recent times I started to notice some people from politics today such such as Rishi Sunak and Keir Starmer.

I also learnt things like MPs who are doctors can’t be Ministers for Health or something similar for say an MP who is a lawyer can’t be appointed Minister for Justice. MP’s also can’t choose where they are placed in government either they just go where they are sent but ultimately I learnt reading all MP’s want to become a Minister of some sort and work their way up.

Despite the book being difficult to get into at first once you break into it it gets more interesting and you learn a lot more and you gain more insight. Reading or listening to the book also helps you to form a more informed opinion about how the government works.

I gave it 4/5 rating because of how insightful the book was but because of how difficult it was to initially get into; I found it a bit dry at the start. There also didn’t seem to be much of an ending it just seemed to just cut off when he lost the running to become Prime Minister. That’s just what I found anyway.

‘Things The Eye Can’t See’ by Penny Joelson 

★★★☆☆ 3/5 rating

This book I read, it’s a Young Adult mystery novel - I still quite like YA books.

Like with all of the author’s books in which the main character has an illness or disability in this book the main character Libby is virtually impaired. I think it was clever of the author to have a visually impaired character especially one with a guide dog to educate people that visual impairments are a spectrum and some people with a visual impairment or who are blind have some level of vision.

At one point in the book Libby is harassed on verbally in the street then later on social media of the same incident when a photo is shared of her showing her stood with her guide dog Sampson looking at her phone [using accessibility settings]. People are commenting saying that she faking for benefits as she can see her phone and her guide dog is a prop. But she is also getting supportive comments from other visually impaired people. I think this was good of the author to put into the book to (a) show that visually impaired people can use technology and (b) the ableism disabled people face because of ignorance and lack of understanding and how rife harassment can be for the disabled community both in person and online - even I’ve experienced it.

The book explores the issue of county lines; how young people get caught up in drug dealing and how they are enticed into it by being bought new things like trainers and given money and are later set-up to be put into debt by and to the bigger drug dealers. It also covers the dangers of country lines including knife crime and murder. Another issue the book covers that goes along with this is cuckooing, where vulnerable people have their homes taken over by drug dealers for the purpose of county lines and the victim is taken advantage of in other ways such as financially such as having their benefits money taken off them.

I like how because this is a YA novel it highlights a current issue that’s affecting young people at the moment. I think this helps educate young people about county lines and the dangers of it and how you can easily get pulled into it without realising. I learnt a lot myself reading the book. I also like the disability awareness side of the book too. For example Libby is into photography and art even with her visual impairment; the book just shows the way around how she manages to do tasks and also how you should support someone with a visual impairment such as helping guide them or announcing the train approaching. The book demonstrated that Libby was just as capable even with her disability.

I rated it 3 stars as it was very insightful and informative and it was a good read but towards the end I did find it a bit unrealistic and also how Libby and her friends went off on their own to find Charlie without informing the police or their parents. In reality that wouldn’t have happened; it was a little too far fetched what happened but like I said it was a good book and it was well written and informative about country lines and accompanying issues as well as understanding more about disability. I would recommend this book and Penny Joelson’s others books if you like YA mystery novels.

Disability services: Specavers home eye test

I’ve shared in a previous blog post about disability services I use and would recommend and I wanted to add about Specsavers home eye tests to this list.

Recently I had a home eye test and I wanted to leave a review and also make people aware that this service is available. Having an eye test at home is something I’ve had before in the past but it was quite a while ago. I recently chose to have my eye test at home again because of the lack of accessibility at my two local Specsavers - I wanted to go with Specavers specifically as I needed new glasses and I wanted to get Cath Kidston frames which only Specsavers do.

It was really convenient, I was able to ask for an afternoon appointment to work around when I’m free after my PA (carer) had finished work. They don’t specify a time so there was a bit of waiting around for them to turn up.

Once they arrive they are able to set up wherever you’d be most comfortable so in a chair or staying sat in your wheelchair or even in bed if needed for some people.

They started by taking a medical history and asking about how my vision has been since my last eye test and any problems I’ve been experiencing. They also ask if I was still under the hospital eye clinic - they check this especially if your illness affects your vision.

You don’t get the fully comprehensive test that you’d get in store as they can’t bring every piece of equipment with them. They did have a small gadget to measure the pressure in my eyes and an opthalmascope to look into the back of my eyes.

They used an iPad for the letter board and set that up and used the traditional lens changing glasses and did a traditional eye test asking me the usual questions over and over like if one looks better than two, or three looks better than four, or whether I could see the letters better with or without etc. as well as asking what letters could be read on what line. They also checked my prism for my double vision and asked whether my double vision goes side-to-side or over the top - for me it the former.

They’d brought along with them a big case of glasses to look at. I’d asked for two particular Cath Kidston frames to be bought along but only one had been brought so I’m waiting for them to come back. - That’s another big downside to home eye tests, you don’t have a shop full of frames to choose from and you’re very limited on what they bring along with them especially as they have to bring a selection that will suit a range of ages and styles for a wide variety of people.

You do have to be eligible for home eye tests whether this be because of a physical disability or a mental illness or due to health issues in old age. They also go through other things such as whether you’re eligible for free NHS eye tests and if you do buy glasses what gets funded and what you have to pay.

They brought with them a mini printer and printed off my prescription.

If needed they can refer people to their GP or to the hospital for further consultation. In my case because my health conditions affect my vision they put me down as needing another eye test in one years time just to keep an eye on any changes. 

 All-in-all it’s a service I’d recommend this service if accessing an traditional opticians would be difficult for you for whatever reason, whether that be poor physical access to physically get into an opticians, or due to being housebound or bed bound because of physical or mental health illness. It was easy and convenient to book my appointment and to prove my eligibility for a home eye test. It also meant that my eyes got tested rather than going without especially as my illness does affect my vision.

Tip: if you do see some frames online you like you can ask them to bring them and hopefully they will.

The only reason why there was a mix up with the frames I requested was because my appointment got rescheduled and they’re been some miscommunication and they’d forgotten to bring the frames to the rescheduled appointment.

The 2025 jar project

So how does the jar project work?

You and someone close to you exchange jars - I’m doing it with my best friend. So I’ll her jar and she’ll have mine. I’ve just bought some 1litre plastic jars as they’ll be easier to post and they’re a nice size to fill.

Over the course of 2025 (or any year you’re doing this project) fill the jar with things like

• Positive quotes
• Messages of encouragement, hope or positivity
• Achievements you want to share with your jar buddy
• Uplifting messages or song lyrics or poems etc
• Anything else positive that you can think of

I also encourage you to decorate your jars.

Just before New Year exchange jars and give your jar back to the person you have made the jar for.

New Year can often be a difficult time for our mental health so the purpose of the jar is to have something to open at New Year and to look through all the positive messages and quotes and achievements your jar buddy has written for you (or drawn) and to have something uplifting to look through.

Getting my new wheelchair

I’ve had my NHS wheelchair for about 7 years now. For the past few years I’ve been wanting a new wheelchair but I’ve never been able to justify the expense. My current chair is all Wheelchair Services will issue me with so to get the chair I want I’d have to pay for it myself or find it some other way to fund it. However recently I’ve been needing to use my wheelchair more as well as using it more when I go out for rides with my Batec, and though my Batec is compatible with my current chair it’s far from ideal and it’s a struggle to use so I’ve decided it’s time for me to finally get the wheelchair I need.

Doing my research 

I did a lot of research to prepare myself for buying my first wheelchair. I knew based on my NHS wheelchair certain things I did and didn’t out of my new chair. For example I wanted a rigid frame chair this time round to make it easier for my Batec docking station; I wanted a single solid footplate that was part of the frame with my feet more tucked in instead of swing away foot plates; I definitely didn’t want armrests or solid tires and I also knew I wanted as lightweight chair as possible too among other things.

As part of my research I also asked other manual wheelchair users what chair they had or would recommend.

I’d decided to initially go with Cyclone Mobility again as they’d come highly recommend when I was looking at powered add-ons and I went with them for my Batec and I liked Alex my rep and the company and the engineer seemed very knowledgeable and I got a generally good impression from them.

I’d watched some of Gem’s videos from her YouTube channel WheelsNoHeels on her experience of buying her latest GTM Jaguar wheelchair through Cyclone Mobility, getting fitted for her wheelchair, mistakes she’s make in the past when buying chairs and her advice to on buying a wheelchair. This really helped me prepare and know steps to take and things to consider as well as ask when demoing wheelchairs.

When I contacted Cyclone Mobility to book a demo they went through what I was looking for in a wheelchair so Alex would know what chairs to bring along for me to try out. I’d already looked and researched the chairs Cyclone Mobility offered and I was very interested in the Aria 1.0 wheelchair so I asked if that could also be brought along.

Another thing Gem advised was to speak with a wheelchair OT so I got myself referred to Wheelchair Services.

The demo

I arranged a date for Alex to come and bring a selection of chairs for me to look at and try out. He brought with him the requested Aria 1.0 wheelchair as well and an OffCarr brand wheelchair. I sat in both chairs and really liked both chairs. I also went through again what I wanted in my new wheelchair such as my seating position; I didn’t want to be sat at 90 degree angle so Alex showed me alternative seating options that would be more comfortable and help with my back and hip pain. I spoke about my research in the Aria chair and why that chair interested me.

I also spoke about my Batec and Alex advised me that Aria wheelchairs don’t quite go with Batec’s and he’d got an Aria chair and hardly used it. He then went back to his van and brought me a GTM Mustang wheelchair. He explained that GTM wheelchairs are made to go with Batec’s. The GTM demo chair was more-or-less my size so it gave me an idea of using it myself.

I was really stuck as I liked all three wheelchairs and they all would meet my specs when customised but the GTM Mustang spoke to me most.

When I was moving around in the demo GTM chair both inside and outside it felt so magical; I didn’t realise how much of a struggle it really was to use my current NHS wheelchair. It was effortless to move around in including outside and I wasn’t tiring or getting breathless I felt like I was in zero gravity! I could see clearly how getting this chair would improve my independence, freedom and quality of life.

Photos of the demo GTM Mustang

Measuring me up and customising my new

Alex measured me up for the GTM Mustang wheelchair and there was a lot of measurements to take as it’s totally customised to my specifications. When I was going through all of this with Alex it was really helpful that Alex was a wheelchair user ehimself so I could use both his professional and his personal experience when customising my wheelchair. For example with Alex’s personal experience he felt GTM wheelchairs were a better chair to go for as he’d bought an Aria wheelchair but hardly used it and preferred his current GTM Endeavour wheelchair. He also personally advised me on things like what tires to go for and how the full gekko grip push rims cause friction when going downhill so the ones I went for were the better option. He also recommended the metal over plastic brakes too.

The backrest is slightly angled back and I have an ergo bucket seat so rather than my legs sitting flat the seat is angled back so my legs are slightly diagonal. I also got measured for my backrest height and the length and width of my seat, the length was measured to what I felt was comfortable. My lower legs were also measured to work out the frame height for the seat to footplate. Alex also measured what size footplate I wanted and I’ve probably missed some things out, so lots of use of the tape measure! We probably spent an hour just measuring me for my wheelchair.

As well as the measuring there are also other customisations I can choose for my chair, some come as standard, as part of the chair others come at an added cost. It was helpful to have Alex, a wheelchair user himself to ask his experience of some of the customisations and options as this is my first chair so some things I felt a bit clueless on.

I asked Alex on what tires I should go for and I asked him about tire maintenance as I’ve only ever had solid tires. I also chose push rims that have a strip of Gekko Grip. Spinergy wheels were suggested but I didn’t go for them as I hope to eventually get some Loop Wheels and use them when I’m out on my Batec and use my normal wheels when I’m using my chair without my Batec.

I also personally wanted mudguards that went over the top of my tires. I saw these on the Aria and OffCarr wheelchairs and preferred them and thought they’d be more practical.

Another customisation I went for is a fold down backrest which would make it easier to transport in the car boot.

I’m also having a Batec docking station fitted to the base of the frame and I’m getting this free as I’ve already got my Batec with Cylone Mobility.

The OT appointment 

I got in touch with my local NHS Wheelchair Services to refer myself to see an Occupational Therapist (OT) and said that my wheelchair needs had changed since I last reported in my annual survey review. - Each year in the post I’m sent a questionnaire about me and my wheelchair to see if my wheelchair is still suitable and if a referral to see an OT is needed.

I was pleasantly surprised to find that I’d see an OT within 4 weeks of my referral once I’d been triaged. When I heard from an OT, sooner than I thought, to book in my appointment I had a great chat with the OT on the phone about the wheelchair I had tried out. I said that it was more-or-less my size and she said that always helped and I said how much easier this chair was for me and she was so positive and upbeat about me getting this new wheelchair and she said how much it will improve my quality of life.

Unfortunately the OT’s that came out to me weren’t so upbeat and positive. One OT’s I’d met previously and she was just as unpleasant back then. Due to the negativity I got from the OT’s I wasn’t able to ask all the questions I wanted to get from speaking with a wheelchair OT. The only advice I was able to gain was the backrest height which I’d already measured correctly with Alex and I’d realised that the high back on my current wheelchair was unsuitable for self-propelling myself in my wheelchair. This confirmed to me that I needed this GTM wheelchair more and what the OT’s were saying about my current wheelchair they had no idea and weren’t listening to me at all about the problems I was having with my NHS chair and why exactly I was wanting to get myself a new wheelchair.

The OT’s did speak about Personal Wheelchair Budgets but again they were very negative about me getting it and how little I’d get. However when I heard back later from Wheelchair Services I was pleased to hear that my budget was going to be more than the OT’s said I’d get. It’s still not a lot but anything financially towards my wheelchair is a help.

I’d still encourage people to speak with a Wheelchair OT when buying a new wheelchair and this was one of the pieces of advice Gem gave; each time she buys a new wheelchair she speaks with an OT.

Meeting with Alex again

I met with Alex again today and I was so excited for this day to come! We went over the measurements again and altered a few things as I just to make sure they’re all correct and I’m happy with them as some things once the chair is made they can’t be adjusted. Thankfully it’s an adjustable frame so some things can be altered like the centre of gravity (how tippy the chair will be for things like popping wheelies) and I think the footrest height can be adjusted to?

There are also some customisations I want to change too. Originally I went for the standard white frame but since my demo I’ve decided to get a custom coloured frame. I see my chair as part of me when I’m in it; it’s my legs and my pair of designer shoes and I want it to show off my personality like a pair of Jimmy Choo’s. I’ve also decided to get carbon fibre mudguards and a footplate instead of plastic ones as they’re more hard wearing and a bit lighter in weight.

I also managed to get a few more things free like the delivery and footplate (bonus!) so the total cost wasn’t a lot extra plus I have my Personal Wheelchair Budget (PWB) to deduct and the chair can under the budget I’d put aside for getting a wheelchair too so that’s fab!

I wasn’t sure if my PWB had been processed but I was able to pay the deposit on my new wheelchair so that the order for it can be put through today to get things started with getting my wheelchair made which takes 12 weeks so I didn’t want any delays. So yep I’ve bought my wheelchair today!

Alex also came back today so Diane could see putting the GTM chair in her car boot along with my Batec Mini which it easily did. Even I could lift the frame of the GTM chair out of Diane boot and then the wheels it was that lightweight - it was like magic; it’ll be so much better for Diane’s back transporting my chair. Then the other weekend my Dad was sold on my new wheelchair when I told him about how to get GTM chair in/out the boot compared to my current wheelchair which we have to completely dismantle to fit in his boot plus to make it a little lighter in weight. Dad also helped me pick the frame colour too. 

Why I’m choosing a manual wheelchair

A few years ago I did look a great deal into folding electric wheelchairs but at the time I wasn’t going out often so I couldn’t justify the price of buying something I’d use so infrequently. I looked again when I was looking at properties as I might have needed a mobility aid to help me get around the property but then when I moved here the layout of my home is so compact I could manage well just with my crutches.

Outside when going out I had my NHS chair which my carers could push me in or I could self-propel myself in.

More recently I have needed to use my wheelchair more. I decided to stay with a manual wheelchair mainly to try to stay as active as I possibly can do.

Recently I looked into powered add-ons, something I’d also looked into in the past alongside electric wheelchairs. I looked at both powered wheels and attachments, devices such as Smart Drives, TriRides and Batec’s.

Cyclone Mobility came recommended and sell both powered wheels and powered attachments and when I contacted them they recommended the Batec to me, in particular the Batec Mini 2 that would meet my needs. 

After trying out the Batec Mini I was sold and purchased one and it’s probably the best piece of equipment I’ve ever bought. It’s truly transformed my life and improved my mental health too. What I love about my Batec is I have the best of both worlds, I can use my wheelchair one it own as a manual wheelchair and be active when going somewhere short and easy then for times where I’ll tire more or when I won’t be able to push my wheelchair I can attach my Batec and let the powered battery do the work.

I think once I get my new GTM wheelchair it’ll transform my life more. I think because I won’t be as tired and breathless pushing myself around and I’ll be able to do me and able to lead the more independent, active and free lifestyle I want to lead as a younger disabled person and then have my Batec add-on. I also won’t be so limited by my chair and it’ll be easier to use inside and outside giving me the assistance I need.

Financing my wheelchair 

I’ve already mentioned the Personal Wheelchair Budget. Through the NHS there are three financial options for wheelchair. The first is an NHS issued wheelchair and they’ll give you the standard wheelchair they think you need based on your needs. - This is the option I’m currently using but what they think you need might not necessarily be what you need which is the situation I’m in now but the chair I currently have is the only one I’d be issued with based on how they assess my needs.

Option two is an NHS issued wheelchair which you then financially contribute to customise. So I’d probably still get the same Invacare Action 3 wheelchair with this option.

Option three which is what I’m going for now is a Personal Wheelchair Budget (PWB). They work out how much your NHS wheelchair would cost and this is your Personal Budget to put towards any chair you wish to purchase. For me my Invacare wheelchair is very inexpensive for the NHS and as I’m classed as an ambulatory wheelchair user my PWB didn’t come to all that much. Part of my PWB also includes a contribution to help me pay for maintenance of the wheelchair as that falls on me not the NHS with a self-bought wheelchair. Currently Wheelchair Services are responsible for the maintenance of my NHS wheelchair. However even though my PWB isn’t a lot compared to the price of my new wheelchair I’m still grateful for any financial help I can get.

I’m not a person to set up things like GoFundMe fundraising accounts for things like this. I did consider applying to charities for grants to fund my wheelchair but there are a lot of hoops to jump through such as keeping medical diaries, getting various medical support letters and getting proof of my disabilities and so on. Thankfully because I’ve known for a while that I’ve wanted to eventually buy a new wheelchair I’ve managed to save up to self-fund my new wheelchair. I hadn’t planned on buying my new wheelchair this soon but I’m struggling so much it’s become more of a necessity to buy my new wheelchair now rather than later.

Product review: Gemini Junior die cutting machine

My die cutting machine

I got my Gemini Junior die cutting machine as an upgrade from my manual die cutting machine after that broke. This gave me the opportunity to get an electric die cutting machine which is what I’d been wanting for a while as I found using a manual die cutting machine quite exhausting to use so I didn’t use it often. Getting an electric machine has been much easier for me and I use it a lot more often now.

I decided to get the Gemini Junior for its size; its plates are A5 in size so with me having limited storage space it’s perfect, it’s probably also less heavy and so more portable that the original Gemini die cutting machine. It still is a weight for me but I can still store it and get it out when I want to use it.

Electric die cutting machines are more expensive, the Gemini Junior at RRP costs about £140/£150. I decided to get a refurbished model at £100 which still included all extras that comes with a brand new machine. As a bonus my machine wasn’t the usual white machine but turquoise which I liked better.

It comes with lots of different cutting plates and with this new machine I can die cut additional materials such as fabric. The main downside I would say is replacing the plates can be expensive and some of the plates can be hard to find. I like the magnetic plate for fixing down my metal dies but the magnetic plate and top plastic plate soon wore out in less than a year of having the machine. I was able to easily find the magnetic plate or shim as they’re also called but I struggled to find the plastic top plate. Eventually I found that Gemini had remade them into solid white plates. The problem I had with the solid white plate was I couldn’t see if the paper underneath had shifted off the metal die so sometimes I cut dies that were no use. Eventually I found some third party clear plastic top plates that I find easier to use than the solid white ones. The only solution with the white plates would be to use use low tack tape I think?

It doesn’t take up much more room storage space wise than my old manual die cutting machine and it’s still just as heavy.

My craft set-up for die cutting

Sometimes I craft with my die cutting machine on the floor other times I sit it on a lap table on the floor. As it’s so easy and fairly effortless to use if I’m going through a crafty stage I leave my die cutting machine out and plugged in and then I can just switch it on when needed. I often make die cut packs out of my die cut sets so at another time I can sit and assemble the pieces onto a card with some glue. If I’m making a card it’s really easy to go to my die cutter and simply cut a single die cut such as a sentiment or if there is a piece missing from a die cut set. It’s very simple and effortless to use the vast majority of the time. However sometimes you do have to push the plates through but once pushed in they do go through the machine okay. 

Things to consider when purchasing a die cutting machine 

If you’re looking to buy a die cutting machine I would highly recommend investing in an electric one as opposed to a manual one. If you’re unsure how often you’ll use it maybe go for a refurbished or good quality second hand machine to bring the price down so you’re not wasting your money if you don’t end up using it a lot. Especially if you have a chronic illness like an energy limiting illness electric die cutting machines are much much better and easier to use as well as being more practical.

Do your research, compare different makes and models to see which one meets your requirements and shop around to find the best price including refurbished and good quality second hand products.

Think about what you want to do with your machine. Do you just want to cut paper or do want it for other projects like quilting so therefore you need a machine that will cut fabric too.

Think about storage; where will you store it? On your desk, or in a cupboard etc? What size machine should you get, will a smaller machine be enough for you or do you need a bigger A4 size machine - do you have room for a bigger machine, can you afford a bigger machine?

Think about the cost of replacing the cutting plates as well as buying die cuts, tools and accessories and storing these too.

Recommended die cut brands and accessories 

I love the Sizzix Thinlets dies cuts and also Lawn Fawn die cuts and their stamp and die cut sets - you can easily buy both brands on Amazon and most online craft stores including their official stores

I’d also recommend the Sizzix Magnetic Craft Stand for putting metal dies on so they don’t get lost as your die cutting and crafting

It’s also helpful to have a poky tool for picking out bits of paper on die cuts

A good stash card or paper of is needed too Sizzix do a great range of card packs of both plain and special effects

I store my stamp and die cut sets in an organiser box - it has different sections in each section there is a folder with a magnetic sheet for die cuts then in the rest of the section you store your co-ordinating stamps that go with the die cuts

The rest of my die cuts I store in A5 ring binders and inside I have A5 plastic wallets attached to the ring binder and inside each folder I have two magnetic sheets back-to-back and on each sheet I store my die cuts organised by their collection or I’ll have all of my hello wording die cuts or my nesting dies etc. Alternately you can buy special die cut folders for organising and storing your die cuts.

Podcast recommendations

Lady Killers with Lucy Worsley

I really like Lucy Worsley’s historical documentaries on the BBC so when BBC Sounds released this podcast series I thought it would be interesting to listen to and something different to my usual listening. I love the feminist angle to this podcast series and Lucy Worsley is such a wonderful historian and so passionate and great to listen to. Each episode in the series features a different female killer in history and Lucy deep dives into the Lady Killer’s life, their crime and factors surrounding the story as well as interviews with special guests. It covers all periods in history and there are special episodes in the podcast series such as exploring topics such as ‘Women on Trial’ and ‘Is the law gender blind?’ In a follow on series Lucy presents a new podcast series called ‘Lady Swindlers’.

A Bit of A Stretch

This is presented by Chis Atkins who wrote a book under this title. In this podcast he explores different aspects of the British criminal justice system in particular prisons. Chris himself did a stretch in prison for tax which is what his book documents. In his podcast series he shares his own experience and also speaks with other men and women who have also spent time in prison and discusses their experiences with them. Each podcast episode explores a different subject that affects those whilst in prison such as children, relationships, mental health and rehabilitation among other topics. 

I’ve found it a very insightful and informative podcast series especially to hear directly from those who have spent time in prison and to hear they think the prison and probation system should be reformed to better meet their needs especially to potentially help reduce reoffending rates and issues within the prison system.

The Rise & Fall of Ruby Franke

You may or may not be familiar with the Ruby Franke story. She was a successful Mormon YouTube vlogger who is currently in prison for child cruelty charges against her own family. This podcast series by the Law and Crime Network looks behind the Ruby Franke story and what went on behind closed doors of her family’s YouTube channel ‘8 Passengers’, the crimes and abuse she and her business partner committed against her children, the criminal investigation and her prosecution and sentencing.

I’d already been following the story on the Law and Crime Network’s Sidebar channel (both on YouTube and the Sidebar podcast) but this podcast went into more detail about the Ruby Franke story and it was all collated into one podcast series making it easier to follow and understand the full story of the case. It was really well presented with inserts such a 911 calls and police recordings and from Ruby Franke’s vlogging for her YouTube channel to back the documentary series up.

Welcome to The Neighbourhood 

If I’m looking for something light and laughable then this is my go to podcast. Unfortunately only one series has been made so I’m soon running out of episodes. It’s hosted by Jade Adam’s (aka Dawn French) and each episode features a guest such as a comedian or radio DJ. 

In the podcast episodes they basically take a look at neighbourhood group chats from all over the UK and pull out the best conversations exchanged, the more laughable the better and Jade and the guest go over these neighbourhood conversations in the podcast. They put on the local accents for the area of the country for the neighbourhood and the guest will bring with them a conversation exchange from their local neighbourhood group chat too. It’s something very different to my usual listening as I’m not usually a comedy person but I do enjoy this podcast.

Hysterical

This podcast is another Wondery investigative documentary series following a mysterious illness that happened to a group of high school girls in LeRoy, New York. The podcast episodes investigates the case as to what happened to the girls and what might be the source of the sudden onset of the spread of the illness, was it in the water or the soil in town or was it all mass hysteria, what really happened and why did it suddenly stop as suddenly as it began? The podcast interviews some of the girls and others in LeRoy who were affiliated as well as experts to try and get to the bottom of what happened in the town.

Why Do You Hate Me?

This podcast is hosted by Marianna Spring who is the BBC’s Disinformation and Social Media Correspondent, I really like her work as a journalist. It’s one in a season of podcasts that she’s brought out through BBC Sounds. 

In ‘Why Do You Hate Me’ and the second season of this a USA season of the series Marianna meets with people hated online for various reasons including Marianna’s own experiences of online hate from social media trolls. She meets with people at the centre of conflicts and in some cases brings them together to see if there can be a resolution. Some of the people she meets include someone who publicly believed they were Madaline McCann, people who believed the assassination attempts on President Trump were staged, conspiracy theorists and online trolls asking them why they spread online hate to her inbox.

Access All

This is another BBC Sounds podcast, it’s a disability focused podcast and each episode will feature different things such as a special guest to come and chat on the show or the shows hosts will discuss different disability related issues especially topics that a current.

It’s a very niche podcast but I think it’s important to have something for the disabled community to listen to. I remember way back during the pandemic I really enjoyed Kate’s one of the hosts at the time she recorded a diary of that was featured on the podcast as she shielded with her wife and toddler and what life was like for her and her family and also her and her wife as they both had the shield how they felt about things medically during the pandemic. It’s also nice to listen to disability related current topics that I might be made aware about or be able to relate to that might not be featured in the mainstream media.

Redhanded

This is a true crime/comedy in one podcast. I wanted to feature a true crime podcast in this post but I wasn’t sure which one to feature as there are a few I listen to. Redhanded is one I’m enjoying at the moment.

I like how Hannah a Suruthi go off script a lot talking about random things, sometimes to do with the case sometimes not but it can be a bit Marmite at times along with the amount of swearing they do too so there reviews on Apple Podcasts are mixed.

It would also be nice if they featured cases that aren’t always murder or serial killer cases - I like true crime podcasts that feature all types of true crime.

Every podcast has its pros and cons though and on the whole I do enjoy Redhanded and I would recommend it.

Uncanny

This is the BBC’s paranormal podcast hosted by Danny Robins. It’s lead to a book and even a TV program and spinoff podcast series such as the lasted Halloween special series, Christmas specials and live-streamed podcasts in front of an outdoor audience, and also a USA series.

It features both well known paranormal cases and cases brought in by listeners to the podcast. Danny analyses each case and has on to help him he brings on a ‘team skeptic’ and a ‘team believer’ paranormal psychologist to help him look at each case and rationalise what can and maybe what can’t be explained.

It’s not a dark paranormal podcast like some others out there on Apple Podcasts (or other platforms for podcasts). It does get a bit spooky depending on what horror level you’re used to. The podcast is also brought to life with sound effects which does make it a little more haunting but I’d say there’s more horrifying podcasts out there.

Books or Audiobooks?

I’m a big reader I love books and audiobooks but some people prefer one or the other so are books a hit or miss or are audiobooks, or do you like both?

Books

One of the things some people find with books are that they’re more tactile and visual. It can be nice to hold a book in your hands and feel the pages. They can also be a nice feature on a bookshelf; I know I like to order my bookshelf in order of colour.

You can either buy books, new or pre-loved. I think a good quality pre-loved book saves both me money and a little bit of the planet too. Alternatively you can borrow them for free from your local library, if you can get to your library, if not some libraries do offer a home library service run by volunteers and in rural areas a mobile library service both things to make getting books accessible to more people. I personally feel it’s important to keep libraries open.

Some of the downsides to books is they’re less portable, for example to take on your commute to work or when travelling. 

Books can also be difficult for some people such as the font could be too small, reading may be difficult if you have dyslexia or cognitive difficulties. Irlens Syndrome may also make reading difficult unless you use coloured lenses or overlays. I have dyslexia and Irlens myself and my M.E. can make it even harder to concentrate on the text and I get easily brain fogged and fatigued when reading at times. I love reading but sometimes I don’t have the cognitive ability to read.

e-books

A more tech version to books are e-readers like nook books and kindles. These are more portable than books and you can carry multiple books at once on them. The downside is the cost to buy an e-reader but e-books are often cheaper than the physical copy. You can also change the settings to make it more accessible such as to enlarge the text and change the font and line spacing. I use the kindle app on my iPad and I can even put a colour filter on my iPad settings for my Irlens. It still doesn’t feel like I’m reading a physical book though, I did enjoy my nook e-reader though.

Audiobooks 

One of the things with audiobooks is I find is I still find they offer me the visual imagination that books do.

Another thing with audiobooks is the cost. Sometimes you have to pay a subscription to access audiobook libraries such as Audible and Scribd. These are cheaper however than the cost it used to be to buy audiobooks on CD or Daisy Players. Some audiobook libraries are free to those who are eligible such as the RNIB Reading Service, and often local libraries offer free online audiobook libraries too, mine is on the Libby App which Listening Books also uses and this fee can be wavered also. Some libraries also use Borrow Box for free audiobooks.

Audiobooks are also a lot more portable than anything else as you can commute to work with your mobile phone and have your audiobooks downloaded on there, or you can travel and take your books with you which is much easier than trying to pack three books in your bag. It’s also easier to listen with noise cancelling headphones to an audiobook when going places than trying to read with noise and distractions around you.

One big downside to audiobooks is that not all books are made into audiobooks, this is really frustrating I find especially when audiobooks are your main source of books. There’s this trilogy of books that I really want to access but only the first book has be made into an audiobook so I haven’t yet been able to access the second and third books. I personally believe under the Equality Act 2010 which covers disability that all books should be made into audiobooks.

Another downside to some audiobooks is the narration is a bit hit and miss, sometimes you can have great narration like Steven Fry’s narration of the Harry Potter series or just general good narration then you have books with bad narration. Good narration is really important as it helps bring the book to life I find.

A big pro for audiobooks is that they are a lot easier and more accessible for people like myself with dyslexia, or Irlens syndrome and those with a chronic illness/disability that affects a person cognitively or from being able to hold a book or affecting their vision etc. It means they can still access the vast majority of books with a lot more ease and independence without hindrance.

So books or audiobooks?

So whether you go for a book, e-reader or audiobook it’s all down to personal choice and also what meets your needs best. For some physically holding a book is preferred, some a more high tech and go for 3-readers, others may struggle to read and therefore audiobooks are more suited. They all have their pro and cons.

Reviewing my new Batec Mini 2

My Batec has to be one of the best pieces of equipment I’ve ever bought; it truly has been life changing for me. 

The Batec I went for is the Batec Mini 2 and I’d highly recommend Cyclone Mobility for Batec’s as it’s something they specialise in.

A Batec is a mobility aid, it’s a wheelchair add-on, it clips onto the front of my wheelchair via a docking station. It really is so easy to attach and detach from my chair. You can have a docking station on both folding and rigid frame wheelchairs.

It has a removable battery and my battery does 15 miles when full and when it’s flat it only takes 4 hours to charge to full. The battery can easily be removed from the Batec and it’s not heavy at all.

What I like about the Batec Mini 2 is it’s really compact and can fold up making it really easy to transport. I love putting my Batec and wheelchair in the boot and taking my Batec out for rides round a local park. Having it fold up also makes it easy to store in my home too. It’s so easy to fold up and assemble in less than a minute. Having it fold up also makes it great to store at home as storage space is something I greatly lack.

For safety especially in this dusky evenings there are rear lights and a headlight . The rear lights can be static or flashing (not quick flashing) and the headlight has two brightness levels. I really like this feature to help give me more visibility.

The Batec has three speeds and I can go pretty fast! Different Batec models do have different top speeds. The control is just a twist on one of the handle bars for the speed of the Batec and for those with limited hand function there is an alternative quad hand control option available. I did consider this for myself but I found that once my hand was on the handle bar I could easily twist it to control it when I tried out the demo Batec. Below the handle bars are four buttons: lights, reverse, forward and speed level. I also have a phone holder which I got complimentary with my Batec when I bought it. There are other accessories available. There is also a control panel but I haven’t worked it out yet other than switching it to MPH. I’ve tried to find an instruction video about it but I haven’t found one yet. The turning circle is also quite small with the Batec Mini which can be really useful. It’s also quite powerful and can take you up and down kerbs. I’ve also found my Batec Mini compact enough to be able to take into my local Co-op and go up and down the aisles.

Even though it’s on the Mini 2 it’s very powerful and it can take me over rough terrain and over kerbs and up steep slopes and so on so it’s allowed me to go places I wouldn’t be able to otherwise go if I didn’t have my Batec and I’m looking forward to going to more places once I have my new wheelchair and wheels with better suspension than my current uncomfortable solid tires. Obviously what you plan to do with your Batec will determine what model will suit you best, for me trips round the park and to the postbox and short journeys suit me having a small Batec fine but there are Batec’s out there for people who are more adventurous and want to go off-roading.

My Batec has given me a lot more freedom to be able to get out and it’s really helped my mental wellbeing. It’s also given me the independence I craved as wheelchair user as I no longer need someone to push me, in the kindest way possible I don’t feel like a little old lady being pushed around by their carer. I feel more like a young independent disabled person (if that makes sense?) I also can’t wait to get my new wheelchair (blog posts to come out on that) and have more freedom and independence and have more adventures riding with my Batec. I also am saving up for some loop wheels once I get my new chair so I have better suspension when I’m riding with my Batec. I think as well going back to how it’s helping my emotional wellbeing with me having my physical disabilities, especially my M.E. I can’t predict my good and bad days and my physical health impacts on my mental health. Days spent inside or even in bed I feel cooped up, trapped by my M.E. and it’s symptoms so when I have a good day and I’m able to get out with my PA/carer for a ride on my Batec even just for a few minutes I’m in my happy place riding with my Batec and I feel free because I’m outside and my Batec has enabled that much more easily and to me my Batec is much more than a mobility aid it’s freedom, independence and happiness.

If you want to check out the models of Batec’s at Cyclone Mobility click here you can also contact Cyclone Mobility for a free demo of the Batec you are interested in. I can honestly say I experienced no pressure when I tested out the Batec. They also sell ex-demo and second hand Batec’s for a fraction of the full cost of a new Batec so keep an eye on their website for Batec offers.

I would say do your research as there are similar products to the Batec’s. Here my tips when looking for a powered wheelchair add-on:

• Powered wheels or a front clip-on attachments - what would meet your needs best. Cyclone Mobility sell powered wheels and when I asked them this and they asked me some questions they advised me that a Batec would better meet my needs personally.
• Compare makes and models and what would suit you, your needs and your wheelchair best
• Speak with others who have that make/model of powered wheelchair add-on
• Look at your budget 
• How often should you use it and how often would it need need charging?
• Compare companies who sell the different powered wheelchair add-ons, get recommendations, see what services they off such as the warranty cover once you’ve bought the product, what areas the company cover, do they offer home delivery and repairs etc.
• Look at hidden costs, like with the Batec I had to pay extra for the docking station

The Batec folded up, the control panel and the docking station on my folding wheelchair

My thoughts on the International Symbol of Access

My biggest thought and problem I have with the International Symbol of Access (ISA) is that it doesn’t represent all disabilities, I feel that on the surface it just represents wheelchair users when in fact 93% of people with a disability don’t use a wheelchair yet the symbol we use to represent disability is of a wheelchair user. 

As a wheelchair user myself when I’m out and about it does represent me as a wheelchair user, such as where to go and park my chair in the wheelchair space on a train or bus or to park in a accessible parking bay or use an accessible bathroom or Changing Places (the symbol on that has a wheelchair user on it). However it doesn’t represent my other disabilities and as a symbol of access it represents me there in my wheelchair and my needs relating to that, but what about my other hidden needs? They’re not represented within this symbol. How can we have, if at all possible an International Symbol that represents disability as a whole?

The original symbol was first created in 1968 to identify accessible facilities and features such as parking spaces, accessible toilets and spaces on buses and trains. I personally prefer the new symbol that was redesigned in 2010 as it shows an active wheelchair user rather than the static person in a wheelchair in the original symbol. It’s hard to explain but in the original symbol the figure is just sat there not doing anything, but it the new symbol have an active figure seems to symbolise that wheelchair users are active, like were active members of society rather than passive static members of society. I just feel that the new symbol needs to catch on and be used more and be replaced over the original symbol and for the new symbol to be more widely know and recognised as the ISA.

There are many other accessibility symbols out there however these symbols are very niche to their purpose and I feel that they may also not be widely recognised and understood past the need of the user for that symbol or especially by those who don’t have any form of disability or chronic illness. What is good is that these symbols are used universally so are used and recognised around the world.

 People and companies are always trying to come up with ways to symbolise disability and chronic illness more universally. For example the Hidden Disabilities Sunflower Lanyard. Wearing a Sunflower Lanyard will symbolise to others that you have some form of hidden disability; you can also buy cards to attach to your lanyard that names your hidden disability for additional visibility and you can also outline what your access requirements are on your card too to make gaining accessibility and visibility of your hidden disability easier. The Sunflower Lanyard scheme is gaining wider popularity and recognition and stores and other venues like airports, train stations, shops and concert venues are trained to recognise the Sunflower Lanyard and how best to meet the needs of those with hidden disabilities. Companies are also adding signs to their accessible toilets to say that not every disability is visible in recognition that accessible toilets are used by a wide variety of people with a wide variety of health conditions; not just wheelchair user (as is often the assumption as to who uses them).

One of the big problems many non wheelchair users find with the ISA is facing attitudes of ableism and discrimination. Because the symbol is of a wheelchair user some non-disabled people hold the belief that the facility or access feature is for wheelchair users only, for example accessible toilets (hence the move to put up alternative signage on accessible toilets) and also accessible parking. So often I hear of non wheelchair users facing scrutiny and hurtful comments for parking in accessible parking bays because they’re not in a wheelchair, or even because they’re an ambulatory wheelchair user an so can get out of their wheelchair even though all of these individuals are using a valid disabled parking badge which they’ve been awarded. This may be because they can’t walk far and so use one of a variety of mobility aids (which  may differ from day to day for some people), those who a blind or visually impaired, individuals who lack a sense of danger, or even those who have severe anxiety can make a person eligible for a disabled parking badge. All these examples are wide ranging yet the only symbol you see around the parking bays are of a wheelchair user. How could we represent the wide range of need for these parking bays, or on the flip side do we need to educate the public so they don’t scrutinise someone with a disability or chronic illness who isn’t in a wheelchair for parking [with their blue disabled parking badge] who isn’t in a wheelchair?

One store in the UK did try to change this to make their accessible parking spaces more inclusive, however I feel it was done very poorly. By calling their parking bays ‘Less Abled Parking’ yes it did include those that were less able encompassing more people than just wheelchair users to be able to park there that were less able to walk far. However by calling is ‘Less Abled Parking’ it almost feels like disabled and chronically ill people are being called ‘less than’ or ‘less able’, yes individuals might be less able to walk far, but they are not less able in general. It’s almost demoralising using the term ‘Less Abled Parking’ in my opinion.

I think with accessible parking companies need to use signage that represents different disabilities like what has been done to accessible toilets to make the public aware that accessible parking is for more than just wheelchair users. I think this would help with education and reduce discrimination.

 The Visibility93 project set out to redesigned what they saw as the outdated and poorly representative symbol for disability. With there being fewer disabled people in wheelchairs than the rest of the population they set out to create symbols to represent different disabilities and chronic illnesses and came up with an alphabet of 27 symbols each representing conditions from Crohn’s and Colitis, epilepsy, diabetes to depression and more. I think this is a new and creative way to represent different disabilities and chronic illnesses.

I think in conclusion finding a universal symbol to represent disability would be difficult because there are so many diverse disabilities and chronic illnesses out there. Despite wheelchair users being in the minority it is often the most visual thing that comes to a person’s mind when they think of disability. So often in television when a character or background character is used who has a disability the go-to is someone in a wheelchair, the same goes for advertising because it’s the most obvious this for a non-disabled person to understand when it comes to the complexities of disability. I think if you asked most people what they think of when you ask them to think about a disability they’ll picture a person in a wheelchair.

As a society we are also so used to the current ISA to represent disability if it were to change to reflect disability more fairly i.e. hidden disabilities it would only be confusing for non-disabled people to understand what it represents in relation to disability.

A day in my life

Waking up 

9am: This is when my alarm goes off to wake me up, I find it helpful to keep to a routine and wake up the same time each morning. Sometimes I’m awake before 9am, usually because I’m in pain; if I do wake early I just take some pain relief if needed and lay in bed and listen to a podcast or audiobook until its time to start my morning routine. I have an Apple Watch and I monitor my sleep on the Apple Health app, my aim is to get 10 hours of sleep. If I sleep well it helps me to function a bit better during the day; if I don’t sleep well then it makes it harder to function and it has a negative impact on my symptoms.

Recently I’ve been waking up with a lot of neuropathic (nerve) pain in my left hand affecting its function too. I can also wake up with subluxed or dislocated joints as a result of my Ehlers-Danlos (EDS).

9.15am: This is when I take my morning medication. I use a Pivotell® medication carousel that sets off an alarm to help me to remember to take my medication; I also take my pink inhaler which has a lovely floral case from Inhaler Tailor - I like to accessorise medical devices as much as possible to make them look less clinical. I also find it easier to use a spacer with my inhaler. - I log all the medication I take, both regular and PRN (as and when needed) plus every time I use my inhaler on the Apple Health app to help me monitor and keep track of things especially as I get so forgetful, it also serves a great help for things such as medical appointments such as my asthma reviews or when I’m asked what medication I take.

I allow my meds to kick in and then I start to slowly sit myself up. I have to do this because of the problems I have with dysautonomia and orthostatic intolerance, basically if I sit up too quickly my blood pressure drops and my heart rate goes up and I get really dizzy and I’m at risk of passing out. I also have to spend a lot of my time laid or reclined during the day as my body can’t tolerate being upright for too long. This is one of the many reasons why having my profiling bed is so helpful as I can sit myself up in little increments or recline if it gets too much until I’m fully sat up and ready to get out of bed; I can also tilt my bed to raise my legs higher up which helps if my dysautonomia symptoms are playing up. Dealing with a dysfunctional autonomic nervous system (dysautonomia) can be really difficult as there are a multitude of symptoms and things that can go wrong in the body all of which are very unpredictable.

9.30am: Once I’m sat up I put on my CareLink around my wrist, I can press it if I need assistance in emergencies and someone will come through on the intercom box, it also detects falls so should I fall it immediately alerts CareLink. I allowed my body to adjust and I’m able to safely get out of bed - so if I get out of bed before my body is ready and I pass out my CareLink falls detector will be alerted. I then disconnect from my night bag. Next I’ll make myself a coffee and the return to rest in bed. I’ll usually listen to something on my iPad like my audiobook or a podcast and I’ll play a game like The Sims or do a jigsaw puzzle, some mornings if I’m not feeling great I prefer to just lay and listen. - I find my MERU Flexzi iPad stand really helpful, it’s attached to the bar on my bed and allows me to use my iPad more easily especially when I’m reclined or laid down in bed. 

If I can tolerate it I’ll open one of my blinds a bit to allow me to start adjusting to the light, later, once I’m dressed I’ll open the other blind a bit if it’s a day where I can tolerate a bit more light. On my bad days with M.E. or my migraines my hypersensitivity to light is worse and so I find the light painful so I’ll keep my blinds closed.

If it’s a day where I’ve got agency care I’ll get my breakfast around 10am which I usually make the night before to make it easier on my morning routine as all I have to do is simply get my breakfast out the fridge.

I’m not completely my best in the mornings; I usually wake up more tired than when I went to bed which is a feeling often felt by people with M.E., I’m also just generally not a morning person either.

When my PA arrives

I have a PA to support me in the day but once a fortnight I have three mornings when I have an agency carer instead as I’m struggling to recruit PAs. My PAs work for either 2½ or 4½ hours depending on what day it is, agency carers are here for 1½ hours. - I’ll write this as though it’s one of my PA’s shorter days to work so you can get an idea of what I enjoy doing in my free time and also what my symptoms are like during the rest of the day.

10am is the time my PAs Diane or Jo start. (My agency carer usually arrives around 11/11.30am)

My PA will make my breakfast for me, usually porridge along with a drink and we’ll have a chat. Sometimes at this point I’m still not feeling fully awake. After breakfast and chatting for a bit we’ll put the bath on to run (my bath is the slowest filling bath in the world!)

My bath lift

Whilst the bath is running we get my clothes out for the day along with my creams. I have a few creams that I apply which are different barrier creams to prevent me from developing pressure sores. Alongside my creams I also have a hybrid airflow mattress which one of my nurses provided me with and this also helps alleviate my risk of developing pressure sores. - I’m assessed as being a higher risk for pressure sores as my skin is more fragile and I have poor healing because of my EDS as well as this even though I’m not bed bound I still have to spend the majority of my day in bed so the creams and mattress help as a preventative and so far they’ve done their job.

With the support and enablement from PAs/carers I have a bath. I try to remain as independent as I can by doing as much as I can without exhausting myself out with Post Exertion Malaise (PEM) either now or later in the day. I usually what I can manage to do is wash my face and brush my teeth and I help to dry myself too. I can’t tolerate showers as with my hypersensitivity showers to me feel like a powerful painful jet wash. To get in an out of the bath I use a bath lift which is a seat that lowers and then reclines me into the bath and then it will do the reverse to get me out. I’ll get dressed on my bed, to protect my PA/carer or if I have a nurse visiting me I’ll raise up the height of my bed to protect their back so my profiling bed not only benefits me it also benefits those caring for me.

12pm: I’m usually dressed by this time. It’s important to pace everything I do to lessen my PEM, pain, fatigue and other symptoms. My PA will make my lunch along with another drink and they’ll also wash some pots and maybe do some other jobs like load the washing machine, make a hot water bottle, and put a drink in a thermal tumbler for me to drink later.

Afternoon

12.30pm: Is when my PA finishes work. After they leave I’m usually feeling exhausted so I take my hot drink and hot water bottle to bed and I put on a podcast or audiobook. Usually I’ll just lay and listen sometimes on my good days I’ll also do something like a jigsaw puzzle on my iPad or some other low-level activity.

1.30-2.30pm: Later I might have some energy for day’s main activity. Depending on what kind of a day I’m having will decide what activity I do, from a lower-energy activity to an activity that will require more energy for me that day, or spoons if you want to use Spoon Theory. Also depending on how much energy or spoons I have and the activity I can usually do an activity for about 20-60 minutes. I have to keep a check on how I’m feeling to ensure I’m not going to overdo it and bring on PEM which is very easy to do.

PEM can be very unpredictable and you never know how bad it will be or how long it will last for. PEM is one of the main symptoms of M.E.

Some of the activities I enjoy doing in an afternoon might include:

• Writing to a pen pal
• Crafting e.g. kits, card making, iris folding, diamond painting, crochet
• Assembling die cut sets onto cards (a nice low-level activity)
• Colouring
• Activity books like sticker-by-numbers 
• Blogging 
• Doing my nails
• Going out for a ride with my Batec on my wheelchair (if it’s a longer day I have with my PA or my Dad is visiting me)
• Put some makeup on

On a really really good day I’ll also do some of my to-do list such as medical admin and other admin tasks such as emails, telephone calls and form filling, I might also do some very basic jobs around my home that are doable for me and leave the more energy zapping or difficult jobs for my PAs or carers, just things like tidying my craft table or over bed table and cleaning it with and antibac wipe. It’s nice on my really really good days to feel like a home owner by doing simple house jobs it also makes me feel more productive and independent too.

If I do an activity I’m usually pretty exhausted with PEM especially if I’ve over done it and often my pain levels flare up too. I also especially get a lot of pain in my legs with my M.E. alongside hip pain due to my EDS. I also often experience headaches and migraines. When I get really exhausted my immune system can flare up too and I can experience flu-like symptoms as well - this is the Malaise which means generally feeling unwell and feeling in discomfort. All these symptoms often require additional pain relief and other medications to help relieve the symptoms as well as the use of other pain and symptom management techniques.

3pm: by about this point (sometimes it’s earlier) I’m in desperate need to just simply rest. I’ll usually close my blinds as the dimmed room helps as the light only adds to my pain. I put in my noise cancelling AirPods to block out background noise as this can exacerbate my symptoms. My profiling bed helps me get as comfortable as possible. I use the app Calm and I put on a soundscape and I just lay in bed and listen to this to rest. 

On my worst days I’m unable to tolerate any noise so I just put in my noise cancelling earbuds and lay in bed to rest. This can be difficult emotionally as I have no distraction from my symptoms and I just have to simply lay in bed. 

I’ve developed a good setup around my bed to have everything I need to hand for occasions when I’m unable to get out of bed.

Depending upon how I’m feeling and if I’m having a good or bad afternoon will determine how long I need to rest for. On a good day I’ll rest for 30-60 minutes on a bad afternoon I’ll rest until my evening carer arrives around 4-5pm

4pm: On a good afternoon afternoon after I’ve rested I’ll listen to something, a book or some podcast episodes and do a low-level activity, or I’ll watch something on my iPad so it’s still restful-ish until my evening PA/carer arrives. 

Evening care

My carers/PAs get to me around 4-5pm(ish)

On a really good day if I haven’t been out earlier I might go out for a ride with my PA on my Batec for about 20 minutes usually around the area where I live.

Once I’m back from my Batec ride or if I haven’t been out I’ll begin my evening care with getting a wash. Sometimes I’ll have a wash at the sink, on not-so-good days I just use Fresh Wipes to wash or Nilaqua waterless foam cleaner. On a bad day and I’m not up for a wash at all I’ll just get into my pjs. In an evening we reapply my barrier creams again. I like to wash as it helps with my sleep time routine; also washing is important when you have barrier creams on your skin as a build up of cream can cause the skin to break down so it’s very important to keep it washed off before reapplying it.

Afterwards my PA/carer will make my tea for me. On my good days I’ll join in and help where I can like if passing things out the fridge and freezer and deciding my portions. My PAs/carers will do other things for me like washing the pots, drying and putting them away, cleaning the kitchen space, preparing my night time and morning drinks, making me a hot water bottle, setting up my night bag, emptying the bins and recycling box, folding laundry or anything else that I need help with.

On my really bad days my carers will let themselves in as I’m unable to get out of bed. If I’m experiencing a crash (when my M.E. symptoms are worse) my carers will ensure they talk quietly and keep conversations to a minimum. They’ll also be careful not to bang my bed or make sudden noises and to be gentle when helping me into my pyjamas. They’ll keep the door shut and keep the noise down in the front room when preparing my tea and doing other jobs. Additional things they do is ensure my pain is managed and give me pain relief if I haven’t been able to take it myself. They’ll also ensure my Hydrant bottle is refilled for me - this is a litre water bottle with a long straw that clips to my pillow, it means I can sip on water and stay hydrated hands free when lifting a water bottle would be a challenge.

5pm: this is when I take my evening medication.

Evening and bedtime routine 

5-6pm(ish): is when my PA/carer leaves depending on when they arrive. I’m usually pretty exhausted afterwards and ready to settle down.

After they leave if I’m feeling up to it (on a good day) I’ll update my bullet journal for the day. Then I’ll brush my teeth. I keep water wipes and travel face products next to my bed so I usually do my evening skincare routine in bed.

On bad days when I can’t get out of bed or I’m already in bed I’ll just be resting washing or listening to something on my iPad. In terms of my personal care I’ll just skip brushing my teeth as much as I dislike it and I’ll also miss out my evening skincare routine too as I just don’t have the energy as I have to prioritise where the last of my my energy goes.

7pm: I’ll get into bed if I’m not already there. Depending on how I’m feeling I’ll maybe watch some easy watching TV show of for a short while. If not I might listen to a book or podcast I might do a jigsaw puzzle on my iPad at the same time or I might just lay and listen if I’m too tired. My symptoms usually gets worse the later it gets in the day.

8.10pm: is when I take my bedtime medication 

8.10pm-10.30pm(ish): I used to always go to bed at 9pm whether I was tired or not but a few months ago I did a sleep session for people with chronic pain and since then I’ve learnt to go to bed when I’m tired so when I go to sleep varies. Sometimes I’m nodding off at 7pm so I’ll go to bed as soon as I’ve taken my bedtime medication other times it’ll be later.

What I find hard to understand is despite really struggling during the day with chronic fatigue is at night I can sometimes struggle with insomnia. My way of trying to understand my sleeplessness is because my body doesn’t have the energy to sleep. I can also struggle to sleep sometimes due to high levels of pain.

9pm: I try to avoid screens before I sleep so I’ll lay and listen to my audiobook or a podcast. Sometimes I read a book but there are times like at the moment where I lose the cognitive function to do things like read a book, but I hope to get back reading soon.

I find it really helpful to have smart lighting so I can adjust to brightness of my lights with my voice or on my phone/iPad I can also turn plug sockets on and off too; I can also have settings such as ‘evening’ or if I say ‘good night’ to my HomePod all the lights and plug sockets turn off around my home - this makes it easier for me and my carers too. 

I sleep with a body pillow around me, it’s nice and comfortable but it also supports my joints as when you sleeps your muscles relax and that’s when my joints can sublux or even dislocate in my sleep.

I aim to get 10 hours of sleep at night and then when I wake I’ll repeat all of this the next day!