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). As well with Specsavers offering home eye tests meant that it was much easier for me to get my eyes tested as I was well overdue and trying to find a wheelchair accessible opticians vs going for a home eye test is one less task for me. The alternative would be having to consider things like disabled parking plus access in the opticians and then once I have my prescription head to Specsavers to get my Cath Kidston frames which all of that as you can imagine is a total headache compared to a Specavers home eye test. 

It’s also important to look after your eyes and have them tested regularly and just as important as seeing your dentist or GP or consultant.

The eye test

 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 but they did call me to say when they were on their way to me and would be with me soon.

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 you can even be 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. I was also asked other questions about how my vision has been since my last eye test.

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. However 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.

I was also shown on the iPad paragraphs of text in different font sizes and asked what text size I could comfortably read. They slightly altered the lenses and asked if I could read and font smaller than before or not.

Choosing my glasses

 They’d brought along with them a big case of glasses to look at. That’s one downside to home eye tests, you don’t have a shop full of frames to choose from and you’re limited on what frames 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. I did like some of the frames in the box but I really wanted to try both the frames I’d asked for. I’d asked for two particular Cath Kidston frames to be bought along that I’d seen and liked on the Specsavers website but only one had been brought so they came back for a second time with both frames for me. The mixup only happened because my appointment had been rescheduled but usually the frames you ask to be brought are brought along.

Tip: You can look on the Specsavers website like I did and ask for specific frames to be brought along and most of the time they are brought which is what I did. 

If there aren’t any frames you like the home eye test team can come back out to you with more frames to look at until you find something that you like. I found the Specsavers staff good at helping me choose my frames and what suited me and which frames I should have as a clear pair and which as my dark tinted pair. You can still add things like anti-glare to your glasses and coloured tints like you can if you went into the Specsavers store.

Getting my glasses delivered and fitted

Once I chose my glasses I had to wait for them to be made. When they were ready the Specsavers team arranged a suitable time to come round to deliver and fit my glasses.

When the lady came she showed me my glasses to make sure I was happy with them and then she fitted them. My frames didn’t need a heat machine she just needed to bend them to fit them and she ensured they felt comfortable and fitted well. She gave me the number to call should I need them to come out again to adjust the fit as she said they can change over the next few weeks as I wear them more. It’s free for them to back out to me just like the rest of the service I’ve received from my home visits.

Eligibility and funding 

You do have to be eligible for home eye tests; this could be because of a physical disability including access issues such as wheelchair access mor a mental illness such as anxiety disorders or due to health issues in old age - you can be any age to have a home eye test if you’re eligible. 

They also go through funding eligibility such as whether you’re eligible for free NHS eye tests and if you do buy glasses what components are funded and what you have to pay. So for me when I bought my glasses I had an NHS voucher to part-pay for my glasses and I also had funding to pay for the prisms in each eye of my glasses; the rest of the bill for the frames, anti-glare coating and darker tint I had to pay for myself.

You can pay in different ways; I paid on their card machine which I found to have a very accessible screen.

They also brought mini printers with them to print off my prescription and also my receipt once I’d chosen and bought my glasses.

If you’re not eligible you can still have a home eye test for a fee of £

Other things

 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 a year’s time just to keep a check on any changes to my vision.

The staff also all carry ID so if you’re unsure you can always ask to check their ID at the door before you let them in. I found the staff more than happy for me to check their ID.

Final thoughts

All-in-all it’s a service I’d highly recommend 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 if you have mental health illness such as an anxiety disorder. It was easy and convenient to book my appointment and buy my new glasses 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.

It was also good that they were able to come back out to me with both of the frames I had an interest in.

The staff were friendly and helpful and willing to go with whatever was easiest for me. I felt like I got a good service throughout and a comprehensive eye test, as well as the service I got when choosing my new glasses both when I was looking at the frames brought along at my original eye test and when they came back out to me.

The service was fully free at no extra cost for all the times they came out to me which was great and much more accessible for me as well - it was less exhausting, I didn’t have to worry about access for my wheelchair and Batec as well as disabled parking, my hypersensitivity to noise, accessible toilets and more.

I also found the whole service more person centred and it was more laid back and met my needs better. Every visit was in the comfort of my own home and I didn’t need to worry about anything like in the middle of my eye test I was able to go to my bathroom. The staff I all met were all so friendly and accommodating and professional and knowledgeable. I definitely know I’ll be having my next eye at home again.

What I put in my hospital ‘go bag’

I keep a bag hung near the front door which is my my hospital ‘go bag’; it’s a pre-packed bag of essentials should I ever go to hospital in an emergency such as via ambulance or when I go to hospital which might result in an emergency admission. It’s easy for someone to grab for me like a paramedic or family member and it’s easy to spot as well. I also get someone to get my phone and Medical Passport to take with me as well - my Medical Passport is also quite important to bring along into hospital with me too, plus it helps me communicate my medical needs.

So, what do I keep in it?

Medication

The first thing that is in is inside is a clear toiletries bag of medication. I’ve tried to put in as much of my regular medication as possible that is still in the pill packets as this is the only way they can be written up in hospital. If I took my medication tray it can’t be used as individual medication can’t be accurately identified from one pill to the other. Sometimes it’s allowed though but not always so I always try to take pill packets so I can have my medication until the hospital pharmacy can provide my medication. I put my medication in a clear bag so it can be seen that it contains medication; also inside I keep an up-to-date list from my prescription sheet of what I’m currently prescribed so they know what to prescribe me in terms of my regular medications.

Toiletries 

I have a small bag of toiletries with just the essentials including:

• Pack of travel size Fresh Wipes - these wash wipes are great to take into hospital and make it so much easier for the staff to help me freshen up in bed when I don’t need a full-on wash with a bowl of water, shower gel and a flannel 
• I also have a packet of sterile wet wipes that I get with my medical supplies order, I use these to clean around my tube site, I’ve also got some wipes for sanitising my tube. I’ve also put in a tubie pad set as well so I can put a fresh set on for hygiene.
• TangleTeezer hairbrush and a hair tie
• Mini dry shampoo 
• Toothbrush and travel size toothpaste 
• Deodorant 
• I also use the sterile wet wipes to wash my face so I’ve got a travel tub of moisturiser to put on so I can freshen my face up as I find hospital air stuffy and it dries my skin out
• Packet of tissues and hand sanitiser - both always helpful especially as I can’t use the hospital alcohol based hand sanitiser 

I try to just pack the essentials as I don’t know how long I’ll be in hospital for. The main things I haven’t been able to pack in my toiletries bag is my barrier creams as I don’t have room for them all and I don’t know how long I’ll be in hospital for and if I am admitted I can get someone to pack them along with everything else I need like pyjamas etc. and have them brought to me.

Other essentials I’ve packed

In the front pocket of my bag I’ve packed a few other essentials:

• My power bank that can recharge my phone multiple times plus cables to got with it to charge my phone and the power bank itself 
• Then in a purse I made I keep:
• Two types of ear plugs: the first pair are complete high rating noise cancellation earplugs and the other pair blocks out background noise but still allows me to hear conversations while wearing them
• Noise cancelling earbuds - when I’m in hospital I just constantly listen to lots of books as I’m usually too unwell to do anything else to occupy myself
• A £10 note for ‘just in case’
• I also have a small book of communication cards that helps speak for me as sometimes my speech can be affected and on occasions I’m unable to verbally communicate. Without my book it can be very difficult staff from experience don’t always have the ability to understand why I can’t [or to them won’t] talk, sometimes staff are good and will allow me to communicate by blinking or squeezing their hand one for yes two for no, or writing letters on their hand - however it would be a lot easier if more people knew BSL so I could finger spell and use Sign Supported English (SSE) like I normally do at home when my speech is being challenging.
• One card gives my personal information: name, date of birth, emergency contact and brief medical information including the fact I don’t like cannulas in my hand. I also have cards explaining my main medical conditions and a card saying that my speech is challenging for me at the moment and to go with that a yes/no card.

I did think about packing some medical supplies especially drainage bags but my bag is only a mini rucksack and there is no room left in it at all and I usually expect and hope that the hospital to have what I need that will be suitable. If not I can get someone to pack what I need from home.

I’ve put a tag on so my cables are labelled as to what they are then on the reverse they have my name and mobile number. My other possessions are labelled with my name and mobile number too, just in case the get lost and if so they can be returned to me. I’ve had things go missing before usually when I’m being moved from one bed or ward to another so I’ve found it helpful to tag my positions. 

I find it really helpful to have this bag to use the essentials in there to take with me to Emergency Department visits that won’t result in a potential admission but I know that in there I’ve got some things I’ll need while I’m at the ED which I can pop back in once I get home. Such as taking my power bank, noise cancelling earplugs, communication cards etc. Once I’m home I can put them back in the bag ready to go. 

I think the only thing missing from my bag that I need to add to it is a luggage tag to identify it as my bag so that’s my next thing to add to it just in case it goes missing when I’m being moved beds/wards or I’m separated from my bag such as if I’m being taken for a scan.

Despite all being prepared with my bag I always hope to not need it, but it’s good to be prepared and it makes it a lot easier as I don’t have to get someone running around packing things for me while the paramedics are ready to take me off to to hospital.

Finally on my phone I keep a list of what I need additionally packing for me should I be admitted into hospital, I like to be prepared and having this list means that whoever is packing for me will pack everything I need and nothing will get forgotten.

The challenges of when my carers aren’t here

When my PA calls in sick depending on how much notice they give me I try to arrange emergency care cover with my care agency, unfortunately they can’t always provide cover so then I’m left with no option but to try and cope on my own which can be is difficult, made worse by the unpredictability of my health conditions. Sometimes I book in agency care but there’s a miscommunication and my care doesn’t get scheduled so I’m left without care then too.

When I have care I try to be as independent as I can be and do as much as I can for myself within my ability that given day. Often I wish that I didn’t have a need for care and that I could do everything for myself; that I could just get a bath with simple ease and that I can manage my home all on my own. However when I’m without care that’s when I realise just how much I rely upon my PAs/carers just for the simplest of things to support and enable me to do most things.

It’s not until I’m without care that I realise just how exhausting it is to do the simplest of things like get basic meals, get drinks, get dressed. I have to ration my energy and decide where best to put it; I also have to set reminders to eat and do other tasks otherwise I forget to as my memory lapses over what time in the day it is. When I’m without care I aim to get myself dressed as I find having pyjama days negatively affect my sleep routine. However sometimes I’m just too exhausted to get dressed and I can’t manage the task on my own as usual my PAs/carers give me a hand with getting dressed when they’re here.

Thankfully though I will usually have some evening care so I’m still able to get a wash of some sort, I try to aim for a sink wash but on a bad day if I’m exhausted from not having care in the day or it’s one of my bad days all I can manage is a wash in bed with a fresh set of pyjamas. I still feel clean and ready for bed but it’s not the same as my PA/carer enabling me to have a bath as part of my morning routine. A quick shower in the evening isn’t possible, there’s time but my hypersensitivity can’t tolerate showers and doing something quickly I find hard as I need to go slow and pace my care.

Getting breakfast and dinner is difficult, I just get simple things to make it easier for me, like cereal or yogurt and fruit for meals. At least my tea, hopefully, will be cooked by the evening PA/carer and I can leave my pots to be washed by them - another exhausting job I don’t have to do. I often try to leave as many jobs as possible for my PAs/carers to do to save my energy even if t means that to pots to wash stack up or my laundry basket gets a bit full as I can’t put a load on as I have no one to help me put it on the airer or fold and put it away.

When my evening PA/carer is off I try to prepare things in the day with my PA/carer (if I have one). I’ll have my main meal at dinner time midday and a sandwich will go in the fridge to eat later. My night bag will be set up for me and also my night drinks will be made up too so all I have to aim to do later on is set a remember to eat my sandwich and get into my pyjamas.

When my main PA had COVID last year I tried to manage as best I could (my care agency back then didn’t provide emergency care) on my own before I became so exhausted I couldn’t go on. In tears over how exhausted I was I called the adult social care service and their urgent care team stepped in to come in and care for me. It was a much welcome relief to get some care and I’m still so grateful for that service as I don’t know what I would have done or how I would have gone on without them. It’s also good to know that the service is there should I ever need it again.

My main hope is to get a full team of PAs so I don’t need a care agency and some of my PAs in my care team will be able to cover for other PAs in situations such as sickness or annual leave so that I’m not without care.

It’s difficult realising just how much I need the support and enablement my PAs/carers give me but it allows me to live an independent life in my own home despite all the challenges with my health. I’m truly grateful to what my PAs and carers give to me.

What I’m loving this month

911 Lone Star

I’ve not felt well recently and my PA has been off ill and my care agency couldn’t provide emergency care so I’ve been loving watching lots of episodes of 911 Lone Star on Disney+. I don’t usually watch much television but I find it a nice low-level activity and it’s an easy enough to watch program and I find I get really into the storylines.

My first audiobook of the year 

The first audiobook I listened to this year I absolutely loved 5/5 I rated it. It was about the first British woman called Elspeth Beard to motorcycle around the world. I came across the book when I watched Driving Forwards about Sophie Morgan and her motorcycle journey across America, her journey was inspired by the Elspeth and she featured the book in the documentary.

My door number sign

For Christmas my Dad got me a door number and address sign to put on the front of my house and it is VERY me. When I go around the estate on my Batec everyone’s door signs are black or grey and their Ring doorbells silver or black. Well at my front door I have a blue Ring doorbell and my new door sign is lavender - I just like to be colourful and different.

My bullet journal 

I love my bullet journal that helps me to streamline my life and keep track of my health. I’ve started to write a post about how my bullet journal helps me and I know people like ideas on different ideas for layouts too - I know I do.

Crafting

I’ve been really enjoying crafting this month. At the beginning of the month I made some thank you cards to give out to people who gave me gifts for Christmas. I’ve also done some iris folding and today I made a start on the diamond art butterfly key ring kit I got for Christmas.

My BSL course

When I was in sixth form college I did some British Sign Language courses. Last year I started doing an online at my own pace BSL introduction course that I’m enjoying to refresh myself on BSL. I like that I can work at my own pace and I can just study what I can and I can go over things again and again if needed. So far I’ve passed the first two assignments that lets me move onto the next section of the course. It’ll feel a huge achievement when I pass.

Looking back at 2024 and into 2025

I always try to think positively and there have been many positives in 2024 but equally it has had its challenges. I think living with physical and mental health conditions you can deal with with them either of two ways you can wallow in it or you can try and be a warrior and face things; I’ve always been the latter. Yes I do have moments where I’m ’sick and tired of being sick and tired’ and I’ll sometimes have a bit of a cry but I always pick myself up and quickly dust myself off to carry on.

Reflecting on 2024

2024 has been a mixture of a year with some really amazing things and some really tough times.

I often choose a word for the year and my word for 2024 was ‘enjoyment’ and on the whole it’s been an enjoyable year and I’ve done things for my own enjoyment. I began to be able to physically read books again so that was enjoyable and I’m spending far far less time on social media which is making my life more enjoyable as I don’t get the FOMO: Feeling Of Missing Out. 

I also got my Batec in August and going for Batec rides is me in my happy place and I enjoy being in the outdoors with the aid of my Batec; I’m now spending way less time sat in my PAs car drinking coffee so I’m saving money on coffee! I also love writing to, emailing and messaging friends.

I’ve also enjoyed settling into my home more and more and doing more to it to make it my home.

I also ordered my new wheelchair in November which I’ll be getting in February 2025 which I’m so excited about!

I think some of the harder parts of 2024 was when my mental health took a dip in June. I was struggling emotionally but I’d also gotten too ‘sick and tired of being sick and tired’ but out of that and encouragement from the mental health team I wouldn’t have gone ahead and bought my Batec so a huge positive came out. Recovery isn’t linear, I’ve struggled with my mental health more of my life than I haven’t so inevitably I will relapse, but it’s knowing and having the courage to ask for help. I also have my bad days, especially with my M.E. and it’s been an uphill battle to get specialist services but I’m hoping in 2025 a referral will get accepted somewhere.

In my 2024 start to a new year post I definitely think I set out what I planned to do in 2024. One thing was ‘goals vs values’ so for example rather than setting the goal to read a set number of chapters (goal) I just read until I’d happily finished reading (value) the same with the number of blog posts I’d write each month some months I wrote 1 post other months I wrote 4 posts, what mattered was what I valued and enjoyed in writing all of those blog posts and some months I was more well or less well, or had more or less commitments going on in my life.

Another thing I focussed on was my limited energy and using it on things that are productive and helpful and positive. I think this led me to taking a big step back from social media, focusing more of my attention on my friendships which I value more and using what energy I do have in the day to do something I enjoy like writing a reply to a pen pal or doing something creative or blogging or going for a Batec ride - things that better benefit my emotional wellbeing.

I’ve also continued with my fundraising this year and raised £70.25

The start of a new year 

I think for this year my word will be ‘kindness’.

I’m so excited to be able to say that my new wheelchair is being delivered next month! it’s going to improve my life immensely and make it easier to transport as well as use with my Batec. 

Some of my goals and intentions for 2025 are:

• Set more time aside for self-care
• Rest more and try to create a schedule for my day
• Engage more in my faith - attend more Meetings for Worship and join in with groups run by Friends at the Meeting House
• Spend less and use up what I have especially when it comes to craft and stationary supplies
• Read up the books on my shelf and don’t buy new books unless they’re already part of a series I’m reading that’s on my shelf 
• Continue with my 1SE project for 2025
• Do my Jar Project with my best friend 
• Continue to spend less time on social media 
• Do random acts of kindness 

And let’s see 2025 will turn out like and where it will take us!

Best books of 2024

This year was a great year for books for me especially as I regained the ability to physically read books again. I used to love settling into a book but as my cognitive function declined I lost the ability to read. I read some advice by Hannah Hodgson on getting into reading and I began with reading some graphic novels as well as poetry; I really enjoyed reading Hannah’s own work. I then progressed onto reading books. I did have a time this year when I did lose the ability to read again but thankfully I’m back reading again.

Now onto my best books of 2024 - these were all the books I rated 5/5 and some memorable 4/5 books in my bullet journal list of books for 2024. I’ve listed them in order of reading.

* Spoilers may be revealed *

‘The Silence Between Us’ by Alison Gervais

Rating: ★ ★ ★ ★ ★

This has to be my top book this year I absolutely loved it. It’s a YA novel and it follows the main character Maya who is Deaf who moves to a new part of the USA and so has to start attending a hearing school. She became Deaf a few years ago after falling ill with meningitis. At her new school she has an ASL (American Sign Language) interpreter as ASL is now her primary language. 

The book brakes down barriers such as how d/Deaf people like Maya can still speak but choose to sign instead, and the difficulties of lip reading and wearing hearing aids. The author also brings into the story whether d/Deafness is a disability of not and also the division in the d/Deaf community over cochlear implants. The book also covers relationships between d/Deaf and hearing people. Another topic the book covers is the lack of support and how few interpreters there are in education for d/Deaf students especially when Maya was looking at going away to college.

In the book one of Maya’s classmates who initially didn’t understand d/Deafness learnt ASL so he could communicate with Maya in her language. I liked the acknowledgment that he was particularly stepping into her world. This proved useful at one point in the book when Maya had to take her brother to the hospital and her mum was away on business and the hospital’s electronic service for ASL interpreters was down so her friend stepped in to help interpret.

The storyline follows Maya settling into her new school, getting ready for college, making friends and also developing a relationship. A classic Young Adult coming of age novel.

It was a thoroughly enjoyable book and I loved the storyline, it was really well put together and it made a really good listen (or a read). I’d highly recommend this book!

‘A Litter of Bones’ by JD Kirk

Rating: ★ ★ ★ ★ ☆

This was a Crime Mystery novel which I read.

It was set in Scotland in the Highlands and followed a child going missing, for DCI Logan the case reminds him of a case he’d work on in the past.

I really enjoyed this book and it was quite memorable, I’d be interested to read more in the series either reading or audio as I liked the style of writing and the characters in the book too. (I did find myself reading it in a Scottish accent in my head!) It was very realistic as some police crime novels are a little unrealistic on how the characters operate as police officers, this was very true to life I found, or as I imagined policing to be like. The storyline in the book was very good and well thought out too. 

If you’re looking for a new crime novel series then I’d recommend reading this one.

‘One’ by Sarah Crossan

Rating: ★ ★ ★ ★ ★

This was a book that I got for Christmas that I read. I head about this book from one of Hannah’s book reviews on her YouTube channel* (I often find good books there).

I thought this book would be a good book to get be back into reading as it’s written in prose so a bit different and a style I’d never read before.

The book follows the lives of conjoined twins; what it’s like to live as conjoined twins the two different personalities of Grace and Tippi. In the prose you can see the two different personalities.

The book follows as Grace and Tippi start a new school after always being homeschooled and how each of them adapts to going to school and making friends and also relationships and also life changing decisions.

They are two different people but one body at the same time.

This is another Young Adult coming of age book. This is another book that I’d highly recommend and don’t be put off by it being written in prose you will love this book and feel a rollercoaster of emotions especially at the end.

 

‘A Danger to Herself and Others’ by Alyssa Sheinmel

Rating: ★ ★ ★ ★ ★

I sort of stumbled across this book but I’m so glad I did as I really enjoyed it and it was a fantastic book (I listened to this book).

This book genre of this book is Young Adult Fiction.
It follows the story of Hannah who is wrongly put in a mental health unit and the story unravels from there. There were lots of twists and turns and things I wasn’t expecting to happen.

It was really really well written and the ending was just not what I was expecting at all. I’d definitely love to see if this author has any other books.

The only thing I would say about this book is that it does have a few trigger warnings around mental illness subjects.

Other than the trigger warnings if this book is okay for you to read then this is another great book that I’d highly recommend and is well worth reading or listening to.

‘A Good Girl’s Guide to Murder’ by Holly Jackson 

Rating: ★ ★ ★ ★ ★

This is the first book in a trilogy; I much preferred this first book to the following two books in the series and I gave them a lower rating.

It’s a Young Adult crime/mystery novel.

The book is about Pip who is doing an Extended Project at her sixth form college. For her project she decides to invest a local murder for who she believes the wrong killer was wrongly accused and she sets out to find the true killer.

The book is full of twists and turns and things you do and don’t expect to happen.

All-in-all it was an enjoyable read and it was well written. I listened to the audio version of the book which was partially dramatised, such as sound effects for when Pip was using her voice recorder for and when she was interviewing characters in the book on her voice recorder different people’s voices were used. So if you do listen to audiobooks I would recommend listening to the audio version of this book just for the effects.

The book has now been dramatised into a television series on BBC but I’m yet to watch it to compare it to the book.

‘Time After Time’ by Chris Atkins

Rating: ★ ★ ★ ★ ★

This book was a sequel to the author’s book ‘A Bit of a Stretch’ which documented Chris’ time in prison for tax crimes.

In this book Chris speaks with offenders themselves to explore why people reoffend. As the book came from the point of view from reoffenders themselves it gave a really unique and interesting perspective into why people reoffend and also what they as offenders feels needs to change to reduce reoffending rates, especially as reoffending rates are so high in the UK.

Some of the topics covered in the books was the probation service and how that needs to change to reduce reoffending, also other support for prisoners once they leave prison. Other issues around reoffending that the book covered included housing and homeless, finances and turning back to crime for money therefore they end up back in prison, education and employability was another issue, even individuals enjoying life in prison so they reoffend just to return to prison.

Chris writes in a really personable and relatable way. Though he hasn’t reoffended since leaving prison he has the experience of being in prison himself so you can tell that he really connected with the people he spoke with for this book.

I think this book also makes a great resource as we’re hearing from reoffenders themselves what the problems are that make them reoffend so it could be used to changes services like the probation service and other services that help those newly released from prison to try and reduce reoffending rates.

It was such an interesting book/audiobook to read/listen to. It really educated me and made me more aware. It’s a book I’d highly recommend.

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

Rating: ★ ★ ★ ★ ☆

This is a Young Adult mystery novel.

In all of Penny Joelson’s books she has a main character with a disability or chronic illness. In this book Libby is visually impaired and has a guide dog called Samson.

What I like is the barriers Penny breaks down around disability, such as in this book the focus is around Libby’s disability. We learn that blind or visually impaired is a spectrum and most people still have some vision, even if you have a guide dog. Also Libby’s hobby is photography and her favourite subject is art, things visually impaired people can still enjoy, they just adapt to meet their needs. We also learn about ableist attitudes towards disability in the book and online hate. The book showed that Libby was just as capable she just needed help with guidance and a few other areas of support as well as using adaptations to be independent and capable and able.

The book follows Libby and a couple of her friends as she tries to find someone she knows who is in trouble and in danger.

Other issues the author brings up in the book is county lines and the dangers of it, including getting set up buy higher up the chain drug dealers to put people in debt. It also brings in another related issue which is cuckooing where a vulnerable person’s home is taken over by drug dealers and how they are exploited. The book also explains how people are drawn into county lines such as by being given money and being bought new mobile phones or trainers.

I think for a Young Adult book discussing disability awareness and also awareness about county lines is really important.

I really enjoyed reading this book and following Libby as she investigated her friends disappearance and as she searched for him concerned for his welfare.

‘Twas The Nightshift Before Christmas’ by Adam Kay

Rating: ★ ★ ★ ★ ★

This is my annual Christmas go-to that I never tire of and it’s wildly hilarious with a festive twist. The audiobook is read by the author and he’s a great narrator bringing the book to life. As well as being a doctor (who’s now hung up his stethoscope for writing) he’s a great comedian.

The book is in diary format following the various years he worked as a doctor over the festive period each year. In each year he recalls excerpts from his diary of different cases, often festive related cases. Amongst the hilarious cases he does also recall the more difficult cases in his career and also the downsides to working over the holidays such as the strain it put on his relationships.

If you’re looking for a festive laugh then this is the book for you.

Looking after your mental wellbeing over the holidays

The holidays can often be a difficult time, especially if you struggle with your physical and/or your mental health. Here are a list of things to help you look after your mental health over the holidays:

Plan something lovely for Christmas Eve and New Year’s Eve 

Christmas Eve and New Year’s Eve can be two days that are the most difficult. You may have a lot of anxiety on Christmas Eve about how Christmas Day will go and how you’ll cope. On New Year’s Eve you may be reflecting on the year that has been and the year ahead and be struggling with many mixed emotions.

Making a plan ahead to do something nice for either or both of these dates mights be an idea to help you cope and get through those days as well as having something to look forward to.

You might plan a whole day or just a small part of the day, it’s up to you and what other things you have going on on those days. - Always remember too that it’s okay to sit out of events over the holidays if you need to look out for your physical or mental wellbeing.

You could do something like have a cosy PJ evening and have your favourite meal and/or dessert. You could get a takeaway or cook something or buy in your favourite flavour of ice cream alternatively you could make a special hot chocolate with cream and marshmallows and have this while you watch a box set or a film. You could also do your nails and have a go at some nail art. Or alternatively if you wanted to do something in the daytime you could go to somewhere special to you like a park or the beach and go for a walk or a ride (however you travel) out in the fresh air.

Plan some moments of ‘Me Time’

Self-care isn’t selfish; it’s important to spend time on yourself. Planning moments of ‘me time’, whether it be 5 minutes, a hour or a whole evening can really help with emotional wellbeing. 

Some things you could do are:

• Read a book or listen to an audiobook 
• Sit quietly with your favourite hot drink
• Spend time with a pet (if you have one)
• Have a DIY facial 
• Paint your nails
• Watch your favourite box set 
• Listen to music or a podcast 
• Do some crafting like colouring, card making, crochet, diamond art etc.
• Doing your makeup or a nice hairstyle 

Have some screen free time

These days we live with our hands attached to us and on average adults spend 6 hours and 40 on our phones a day with 2 hours and 20 minutes being the average time spent on social media. Research has shown that this time spent social media does have an impact on our physical and mental health.

I know from my own experience that the less time I spend on social media the better it is for my mental health and I don’t actually miss social media if I haven’t logged on for a few days. I personally would rather write a letter to a friend or message a friend if I had to use my phone. 

One way you could look after your mental wellbeing could be to have some screen free time away from either social media or your phone completely. Alternatively you could set up an app timer to limit time spent on social media or what I’ve done is delete the social media apps from my home screen. Especially over the holidays you could use your screen free time to do other things like making thank you cards to give out in the new year to everyone who has bought you a gift, or you could spend the time with your family doing things together such as playing a game or watching a film or you could get last minute jobs done like wrapping gifts.

Spend time outdoors 

Spending time outdoors does wonders for our mental health which research supports.

I know since I’ve got my Batec and being able to go out for a ride with it in the outdoors more often has really benefited my mental health.

Obviously the weather isn’t the greatest this time of year but wrapping up and going for a walk or a ride (if your a wheelchair or mobility scooter user) when the weather is nice even for 5 minutes as often as possible can really benefit your mental health.

If you struggle with the cold you can get thermal hat, scarves and gloves and thermal coats. For wheelchair users you can get wheelchair cosies (mine is very thermal and warm). You can also get reusable hand warmers.

Get plenty of sleep

Getting plenty of sleep is so important for our mental wellbeing. Often when you’re struggling with your mental health it has a negative impact on your sleep. You might struggle to get off to sleep instead you may lay awake worrying about things or just find you have insomnia. Alternatively you might have broken sleep or unrefreshed sleep where you’ll still feel tired when you wake up in the morning.

If you have physical health problems you might find you struggle to sleep because of symptoms like pain, or if you have limited energy and you’re very fatigued you might find it hard to sleep because your body doesn’t have enough energy to sleep. You also might have unrefreshed sleep too and wake up feeling tired too. This can impact on both your physical, cognitive and mental health.

Some things to do to help with sleep are:

• Avoiding screens before bed so doing an activity like reading or laying and listening to a book or podcast before bed
• Having a hot milky drink at bedtime 
• Having some sort of bedtime routine where you get ready for bed and then settle down at the same time and do your screen free activity until you’re tired and ready to sleep 
• Wake up at the same time each morning and have a small morning routine 
• Get ahead of your pain before it becomes your pain levels are really difficult 
• If you can’t sleep don’t fight sleep - if you can get out of bed do this for a short period of and do a screen free activity until you feel able to sleep - if you can’t get out of bed do something in bed until you feel ready to sleep
• If you just can’t sleep at all just laying in bed and doing something like listening to a book, podcast, music or the radio is still allowing your body to rest as often just laying with your thoughts can be difficult for your mental health 

Keep it in a journal

Journaling can really help with emotional wellbeing; instead of bottling feelings up you can write or draw in a journal how you are feeling an it can be a good emotional outlet. 

Writing or drawing (or both) in a journal can also help you work out your feelings and analyse them to make sense of them. You can put how you’re feeling into your journal and keep it in there almost like a container for how you’re feeling. Doing this is especially helpful as the holidays can be a more difficult time of year and can bring up a lot of difficult thoughts and feelings.

You can also make lists in your journal to help you organise what’s in your mind; this really helps if you struggle with anxiety.

My full-time job

Behind the scenes of my disability is my full-time job as it often feels. Outwardly you see me laid in bed listening to a book or going for a ride with my Batec but there is a lot more to living with chronic health conditions than people realise.

Firstly there is the management of my care, yes I use agencies to manage my PAs and also a care agency but if a PA is away I have to arrange alternative care myself. I also have the paperwork that comes with having Direct Payments to employ my own PAs and occasionally I have to call or email adult social care about my care. Sometimes there are also meetings with social workers or the finance department. I’m also trying to employ PAs so there is admin involved with that too including looking at CVs, arranging interviews, emails etc.

 Being prescribed medication is also far from straightforward. Recently for whatever reason I’ve had to move pharmacy a few times and that’s a total headache to sort out especially as my prescriptions are a bit complex plus I have them organised into medication trays made up by the pharmacy for me. Changing pharmacy means re-registering with the new pharmacy; informing my GP practice; getting my medication tray set up correctly, getting it delivered on time and more. Then once I’m with a pharmacy there are the phone calls to ensure my medication gets delivered to me on time especially if I have an appointment on my usual delivery day and asking for additional prescriptions such as antibiotics to be delivered to me as well as ensuring I don’t run out of medication. I also have to remember to order certain medications, some the pharmacy do for me but my ‘as needed’ medication I have to email my GP practice to order and I have to remember to do that before the medication runs out which isn’t always easy.

Managing my appointments can also be a task and a half. I have to either fit them into when my PA can take me, or alternatively book them after my PA has finished work depending on the appointment type. Appointments are also a challenge when you have an energy limiting illness as they’re exhausting and cause Post Exertion Malaise to develop as a result from doing the appointment. I try to just do one appointment a week to manage my PEM but that’s not always possible. I also have ways to manage the PEM around appointments such as resting before and after the appointment, using mobility aids like my wheelchair, taking notes, doing video or telephone appointments where possible instead and so on. Then there are appointments to make such as GP appointments, community nurse visits, therapy sessions to book and specialist referral appointments to chase up too as well as see where I am on waiting lists for appointments like community physio or neurology.

Then there’s my PIP (disability benefits to help cover the extra costs). I’m dreading when the time comes for that to be reassessed; filling in the paperwork; getting supporting evidence; the assessment. I have the same with my Universal Credit; occasionally having that assessed and trying to gain evidence that I need a telephone or home assessment and the rigour of the assessment process; trying to prove your disability and inability to work (when you desperately wish you were well enough to work) and the feelings of the stigma that comes with being out of work and on benefits. 

Then there’s managing the illnesses themselves. That in itself is a full-time job. Managing and staying on top of the symptoms which can often have a domino effect on each other. Treating symptoms when they occur. Looking out for warning signs like low blood pressure or tachycardia. Ensuring I get enough rest, sleep, hydration etc. Keeping my mental health in check. Remembering to take my medication; stay ahead of the pain. 

As well, doing all this work can exacerbate my symptoms and worsen my health. Like I mentioned going to appointments can cause Post Exertion Malaise but even the time spent talking or emailing can be just as challenging and can bring on PEM too especially if I’m already having a wobbly day or I don’t pace myself well enough with tasks but even with well managed pacing I can still be left exhausted and with exacerbated symptoms feeling flat out in bed. That’s one of the big challenges with having an energy limiting illness, you have to do all this work despite my lack of energy to do it.

Then there’s all the in between work of this full-time job. Such as ordering replacement disability aids; contacting places to get equipment fixed such as if there’s a fault with my mattress or Batec; making repairs to my wheelchair (if it’s something I can do), if not calling to get that fixed; finding a new cleaner (something I’m currently doing); ordering supplements; logging symptoms in my bullet journal; doing my catheter maintenance; ordering medical supplies; organising and putting away medical supplies; getting PPE for my PAs and any other miscellaneous emails or telephone calls that need making - the list goes on!

Now do you see how much of a full time job it is to be disabled or chronically ill? Plus amongst all that I have to find time for myself as well as do some house jobs (but most of house jobs I leave to my PAs/carers to do to save me some energy). 

Also if I’m having a bad day it’s almost impossible for me to get admin tasks done as I have to prioritise resting in bed as talking on the phone is often exhausting and I’m limited with what I can do and I have to reschedule appointments especially ones I have to leave the house for. This is why trying to rest before appointments and limiting the number of appointments is so important but I can’t schedule my bad days and with M.E. should I completely crash everything comes to a halt and there’s nothing I can do; all I can do is try to prevent myself from getting to a point where my body does crash so that I can do my unpaid full-time job. A job I never asked for or signed up to but one I must do.

I also try to schedule mental health days every so often where I try to put my full-time job aside as much as possible and do things for myself. Or even if I’m just having a day where I’m doing a lot of work for myself job I try to schedule a moment to breathe by sitting with a hot drink and reading my book for a bit. This just gives me a break from being surrounded by illness as I live with my chronic illnesses and have to deal with them 24/7/365 and then on top of that I have my medical full-time job, so escaping into a book or craft project gives me some much needed respite.

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.

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.