Product review: MERU Flexzi 3

I recently bought the MERU Flexzi 3 which is a stand for my iPad (or it can be used for other devices) I’d been thinking about getting it for a while, especially after buying the Flexzi 1 stand which I attach to the frame of my wheelchair to mount my iPhone onto. The Flexzi 3 holds weightier items such as iPads.

Like most disability gadgets it wasn’t cheap (I did get VAT relief on it so that helped a little and postage was included) but I can say that it’s one of the best gadgets I’ve ever bought.

It comes in either black, green or pink and you can buy an extension kit to lengthen the gooseneck. It can be moved around quite easily in endless positions and with this product it comes with a part that can mean it can be clamped to a table as well as to a bar. Other options can be purchased from MERU such as iPad cases, additional Velcro patches and press buttons - depending on a person’s need. Personally I just bought online a clear iPad case to put my iPad into to attach it to the Flexzi 3. 

As well as using it to mount an iPad other devices could also be attached to the Velcro pad if you purchase extra patches. You could attach e-readers, mobile phones, or you could buy the camera mount too as another use of the Flexzi 3.

As you can see from the photo I just clamp it to the grab rail on the side of my bed. It’s designed well as sometimes I struggle with my hand function but I feel in the design process they considered the hand grip for tightening the clamp to be accessible to those with limited hand function.

The main reason I bought this was because I spend a lot of time in bed, especially reclined so I can manage my M.E. and symptoms like orthostatic intolerance, tachycardia and low blood pressure. It’s difficult to use an iPad or any device when you’re reclined or laid flat in bed. For so long I awkwardly tried to use my iPad in bed either trying to watch programs, videos, putting on an audiobook or podcast, typing emails or lists or blogging etc. Now I can put my iPad into the case mounted on the Flexzi stand and I can easily position it however I like depending on how I’m laid in bed and it’s just effortless. I can use my iPad as normal and it’s just made life so so so much more easy for me. Then when I don’t need my iPad on the stand I can take it out the case and put it in the case that doesn’t have the Velcro patch and use my iPad as normal, not on the stand such as if I want to take it to another room. I could even put a Velcro patch on a phone case and mount my phone onto this stand too. It’s totally revolutionised using my iPad from my bed.

The Flexzi 3 also has a part that can be taken off and slotted into the clamp to allow it to be attached to surfaces such as a tables, desk or tray.

Table clamp

As amazing as this product is and I’d still buy it I’d say the main downsides and possible barriers for some people being able to purchase this assistive device is the cost of the product even with VAT relief. For me it cost £80 which is a big chunk out of my PIP budget and I did have to save for it. Also the clamp is very big; I tried to clamp it on the other side so I wasn’t knocking myself on it but it really limited the movement range of the pink goosenecks so I would probably have to have bought the extensions so for not I’ve just put a small pillow to prevent unwanted knocks and injuries.

Despite the downsides I’d definitely say that the benefits that this product has brought me totally are worth it and it’s a product that I wish I’d gotten a long time ago.

I’d said for anyone who spends a lot of time in bed, or those who struggle to hold a devices this is the perfect product for you. With this Flexzi 3 you can clamp it to a bed rail, an over bed table, a wheelchair frame or table to name a few places.

Book Review: “The Silence Between Us” by Alison Gervais

Rating: ★★★★★ out of 5!

Young Adult fiction is one of my favourite book genres because I like how it touches on many different life topics and challenges including, friends, family, relationships, education, careers, health and disability, social issues, political issues and more.

One of my favourite things about this book was how the author made the main character Deaf and I’ve never read any book before with a Deaf character let alone a main character.

I read “The Silence Between Us” as an audiobook though I felt it would have been better to have read this book as sometimes I struggled to follow the reading out of finger spellings especially with my dyslexia. Shorter words I could get like “name M-A-Y-A” but when longer names and words like ‘collapsed lung’ was spelled out I gave up trying to work out what I was listening to and backtracking over trying to work out what was being spelled out.

The book storyline is about Maya who became Deaf and her, her mother and younger brother who has cystic fibrosis move across the US because of her mother’s job. Maya isn’t able to join another Deaf School as there isn’t one close by so for the first time since becoming Deaf she has to go to a hearing school with the support of an ASL translator.

Maya is paired with a buddy, Nina, to help her acclimatise to her new school who she becomes friends with. She also becomes friends with Beau who learns ASL to communicate with Maya. Nina also picks up ASL too. I like how both Nina and Beau learn Maya’s language to communicate with her. This comes in helpful as Beau’s ASL is more advanced and one night Maya has to rush her brother to hospital and the virtual translation system is broken so Beau comes and translates.

I like how the author brings in aspects of the d/Deaf community into the book as after all the main character is Deaf. Some of the things the book touches upon are difficulties getting employment because of the employers responsibility to provide a translator, challenges in education including the lack of educational translators. In the book it also explores the differing opinions in the d/Deaf community as to whether d/Deafness is a disability or not and around the subject of cochlea implants.

As well the author writes about other hearing students attitudes towards a Deaf person. Such as at the beginning Beau asked Maya why she signed if she could speak orally. There was also an incident where Maya’s lab partner forgot she was Deaf and an incident happened and he said that he didn’t want Maya as his lab partner anymore because she was Deaf. There was also another incident were Maya lip read her being called a ‘token disabled chick’ when some students were talking about prom dates.

As someone with a disability I could relate in my own way to a lot of the things brought up in the book. Such as lack of access and accessibility and accommodation for our needs including the lack of funding or political barriers to us gaining access such as barriers in education and employment like in this book. Then there’s ableist attitudes and ignorance that again is another barrier and people not thinking about what they’re saying or involving us [disabled people] in conversations especially when it’s about things that directly affect us. Or people wanting to step into our world like how Nina and Beau stepped into Maya’s Deaf world.

I like how at the end of the book the author showed that d/Deaf people can succeed in a hearing world; it’s just a bit more challenging and there’s a few more obstacles to overcome.

One good thing about reading the book as an audiobook was there was an interview with the author at the end who did a Q&A and explained why she wrote the book and she explained how she was hard of hearing herself and wanted that representation in a book when she was younger. She explained about the character Maya and Beau, the two main characters and their different personalities and who she related more to as well as talking about her own experiences and challenges being hard of hearing.

Making a routine for yourself

Due to my M.E. I’m mostly housebound but to manage my symptoms I have to spend most of my day in bed. This can bed hard especially when it comes to the structure of my day as days can often all blend into one. However I’ve found that giving my day routine and finding lots of different activities and doing a variety of activities that I can do in bed helps to give me the structure and stability I need to support my wellbeing. - I will do another blog post when I can on different activities that I’ve found can be be done in bed.

My routine is something I’m still working on since I’ve moved into my own home as I lost the routine I had when I was living at my Dad’s because my life looks quite a bit different now and I also need more support from PAs/carers (plus with them being here especially on PA days I have less free time in my day for doing the things I want to do on my own.)

I’ve developed a rough routine which my pain psychologist suggested I do and she suggested I create a good day and a bad day routine so I can switch between the two. Some days I can start off with the good day routine and end up using the bad day routine if my health takes a turn.

See at the bottom of this post for more about routines as like can’t always be a solid routine and sometimes we have to give ourselves and our routine a bit of flexibility.

Tips for creating a routine in bed

• Have a set morning routine. For me I wake up at 9am and give myself half an hour to wake up, take my morning meds and sit up. Then at 9.30am I have my morning routine to do so I’ll have a coffee, check my messages and emails etc. Or sometimes (usually - I need to get better at doing admin in the morning but I’m not a morning person) I’ll do a low-level activity to get me started.
• Pace yourself throughout your day. This is a useful blog post I wrote about pacing, activity management and rest with some different techniques.
• Work out when is best for you to do certain activities especially high energy activities like getting washed and dressed. For some people this is in the morning for others this is in the evening. It also depends on if you can get out of bed and to the bathroom to wash and whether you have the support from carers or caregivers such as family to do these activities. Aids can also help make these activities easier such as shower chairs/stools or a bath lift. You might want to bath or shower every other day and wash at the sink in between or another great alternative I find for washing are Fresh Wipes which are some really good wash wipes that I find really helpful. 
• I find with high energy and sometimes medium energy activities it can be helpful to limit how many of these activities you do in a day. - For me I have one ‘main’ activity a day (on my good days) that I do in the early afternoon when I have the most energy, what I do depends on how I’m feeling that day.
• After high energy activities and sometimes depending on what I’ve done for a medium energy activity I find it helpful to have periods of rest in my routine, usually for 30-60 minutes the latter especially after a high energy activity so my body and mind can stop and pause for a bit. I never regain energy but resting just helps my body to stop so it’s not on the go all the time. 
• Rest is different for everyone, for me I like to shut down and just lay and listen to mindfulness meditations and soundscapes. Other people prefer to do a restful activity. Here’s a blog post I wrote about rest. I find it helpful to have several rest periods a day, especially on a bad day just to help especially with my chronic fatigue.
• Alternatively after a medium energy activities you could put a low-level activity into your routine.
• Different people find different activities high energy, medium energy or low-level activity and it also depends upon how you’re feeling that day and how much energy you have for activities. One day an activity may be low-level activity another day it may be medium energy activity or vice versa.
• With high energy and medium energy activities work out your activity limit. This is different for everyone and also depends on the activities and how you’re feeling that day. Usually for me with a medium energy activity I can manage 20-30 minutes and I’d usually need a rest afterwards so I build this into my routine. It’s usually a case of trial-and error to work out your activity limit. With low-level activities I still have to remember not to overdo it and burn out so in my routine I usually schedule 30-60 minutes for a low-level activity. I find it helpful to put a timer on to ensure I don’t overdo it and go over my activity limit or I take regular breaks.
• Don’t forget to put meals and snacks into your routine too!
• It’s also good to have a set time to wind down for bed. Have a snack and a hot milky drink, do an activity that doesn’t involve screens such as reading, listening to an audiobook or podcasts, activity books etc. Then go to sleep once you’re feeling tired and ready for sleep.

Making your bedroom environment different between night and day can help with sleep as it can help your body feel like it’s in two different places even though you’re still in bed. This was a tip I was recently given during a sleep session for people with chronic pain.

Also from this session I got told that if you are able to try to get some daylight into your room during the day that will also help with sleep at night - I do know how hard this can be for those with light sensitivity and it’s something I’m personally trying working on and it’s tough going.

• If possible have a set daily routine so you’re roughly doing the same thing each day (if possible) - this helps to give your mind and body some structure.
• What I do is I have my daily routine in my bullet journal, but life changes like my agency care is at different times each day so I have my routine on my iCal so I can change it as well as colour code it.
• Another great alternative that I also have a use is the Stickman Communications pacing magnet set so I can create my day on a magnetic wipe board with different coloured magnets that I can write on. This gives me more flexibility as I can change it for how my day ahead will look as well as changing it around during the day should I find my energy levels drop and I need more rest and lower-level activities. Also some days I’ll use a green magnetic for a particular activity and other for the same activity I may use an orange or even a red one.

Link to buying the pacing routine magnet set - I personally have found buying fine liner coloured or if not just black wipe board pens great and glasses cleaning spray is great for cleaning wipe boards! You can easily buy a cheap wipe board from places like The Range, Amazon or Tesco and other similar places. (This magnet set does come with VAT exemption for those eligible.)

This is my magnetic routine for today:

Massages on prescription

I’ve been getting regular massages now for over a year. I see a lovely lady called Hollie who specialises in  complimentary therapies for people with health issues. Whenever I see Hollie no two treatments are ever the same because she tailors each treatment to how I’ve been around that time, such as if my lower back has been particularly painful, or my legs have been in spasm more or my circulation has been worse and so she’ll focus my treatment on those issues. Her treatment room is also a little more specialised especially the massage bed which is like a profiling massage bed, the head of the bed raises up and down as does the foot of the bed and the bed also raises in height so people can be made more comfortable when they’re having a massage or other treatment. Another thing I like when I’m having a massage is the fact that I don’t lay on my stomach, instead I lay on each of my sides hugging a pillow when Hollie massages my back and shoulders.

I personally feel that massages like the ones I get with Hollie and by people trained like Hollie should be more readily available and accessible such as on prescription because of the benefits massage can give to people, especially those with certain chronic health conditions that may have little other treatment options or conditions that may benefit from massage, just like you can get acupuncture through the NHS for certain health conditions.

The reason why I feel that some complementary therapies should be available are that I personally believe that care should be supplemented and that medication doesn’t work alone both for physical and mental illnesses. Other things have to be done alongside medication to treat a person’s illness for a positive holistic approach outcome and this in turn, through treating a person holistically or in a person centred way may reduce the patient’s reliance upon medication or may aid their care, recovery, or help to improve quality of life. Idealistically I feel the holistic approach would include the biopsychosocial model of care with things like complimentary therapies, allied healthcare services such as occupational therapy or physiotherapy, talking therapies and social prescribing alongside traditional medical practice care.

There are many complimentary therapies that can be beneficial and aid physical and/or emotional wellbeing such as massage, nail care, Indian head massage and reiki.

About and the benefits of complimentary therapies:

Personally these are the complimentary therapies I feel should be available to patients on something like a prescription for those with certain health conditions because of the physical and/or emotional benefits these therapies offer

Massage

Massage relaxes the muscles and soft tissue, it also increases the delivery of oxygen and blood to the area that is being treated as well as warming the area. Massage has been found to relieve pain, reduce stress, increase the sense of relaxation, reduce anxiety and generally aid a person’s wellness. In rehabilitation massage can also be used to assist with the repair of muscular injuries.

This is the main treatment I have with Hollie and I’ve seen a great deal of benefit physically over time. It also relaxes me reducing any emotional stress or anxiety I’ve been experiencing. Hollie works in a person centred way so she focuses on the issues I’ve been experiencing with my health at the time. I find that it does aide the relief of my pain and my circulation has been a lot better since Hollie has been working on improving that.

Reiki

This is a non-touch though it can be hands on depending upon the needs of the client; it’s a non-invasive and non-manipulative treatment which may benefit some people over having a massage. Reiki is traditional Japanese natural healing therapy that tunes into the body’s energies and chakras from therapist to client. Reiki works on both emotional and physical healing.

I’ve had reiki in the past and found it deeply relaxing and I found the lack of touch was helpful as I felt the benefit of what the therapist was doing but by not touching my body reduced my body’s hypersensitivity to touch that I was experiencing at the time I had the treatment. It’s something I’d definitely try again.

Indian head massage 

This is an ancient treatment practiced for over a thousand years; it works on the Ayurvedic system of healing. The treatment works on the the muscles, tissue and joints of the head, face, neck and shoulders. This treatment is especially good for stress, tension, fatigue, insomnia, headaches, migraines and sinusitis.

When I have my full body massage Hollie also works on my head, neck and shoulders especially to relieve my ‘migraine fog’.

Nail care

Certain illnesses or treatments for some illnesses can affect a person’s hands, feet and nails. Complimentary therapies to treat a person’s hands or feet including their nails can be beneficial cutting, filing and performing cuticle work on the nails as well as massaging the hands and arms or feet and legs can help with symptoms as well as aiding relaxation and helping clients to feel clean, refreshed, hydrated and soothed.

I think that this nail care complimentary therapy should be offered alongside allied healthcare such as podiatry as well as hand therapy, diabetes, oncology and neurology clinics etc.

Resources 

• Complimentary and Natural Healthcare Council - you can find a therapist here
• Amethyst Trust

The start to a new year

Something an old pen pal introduced me to the idea of was picking a word for the year ahead of you. I’ve chosen the word ‘enjoyment’ for 2024.

Something my pain psychologist introduced me to was ‘goals vs values’ so for example the goal of reading three chapters and feeling like you’ve failed if you get too tired and don’t read three chapters, or thinking about what you value and enjoy about reading and just value and enjoying reading.

I’ve decided not to set any goals this year like I’ve always done in previous years. Life can’t be predicted. I didn’t manage all my goals last year as I unexpectedly moved into my own home.

I’m just going to focus on what I value and enjoy. I enjoy blogging and YouTubing and I’ll just do it for enjoyment however many posts and videos I do and subscribers I get. I’ll enjoy reading however many books I manage to physically read; I’m just grateful I’m able to read books again, but audiobooks is still reading too. I value my faith. I also value my friendships and I made some wonderful friends last year who mean a lot to me.

I also enjoy having my own home and I feel lucky to have my own home at my age. I want to spend this year settling into my home more and enjoying it and making it more my own space and home.

One thing my therapist said to me recently is ‘you have limited energy, use it on things that are productive and helpful and positive’. My M.E. means I don’t have a lot of energy and I have to be careful with my limited amount of energy. Sometimes I don’t always spend it right; one thing is on social media. Sometimes I waste my energy on social media getting upset, feeling like I’m missing out and getting frustrated. So I also think that this year I’m going to spend less time on social media and focus on the people that matter like friends, pen pals and family and also myself.

6 years of blogging

Today marks 6 years since my first blog post way back in 2018. 

Since then my blog has grown a lot over that time and evolved as I have. Back then my blog was named ‘Diary of a Zebra’ and had very much a diary format sharing my life and mostly what went on with my health. Nowadays however I’ve moved away from being defined by my chronic illnesses and disabilities; I’m still happy to say that I’m chronically ill or disabled but I don’t feel it necessary to chronicle things like ED admissions or write about hospital appointments. I still feel it’s important to write about my illnesses and to raise awareness of them but just in a different way; a way I feel is more healthy. Sometimes I’ve thought about taking down those old posts as they’re not ‘me’ anymore and not what I consider productive or healthy but at the same time my blog shows how I’ve changed over time. I also share less guest blog post too. Some of the guest posts like my old blog posts I’d consider unhealthy but I wanted to give people a space to have a voice and my blog was their platform to share their writings.

These days I more focus on a topic or awareness event and write about that. You may also notice that I post a lot less, this is mostly due to a decline in my health. I still love blogging and I want to continue writing when I’m able to to help raise awareness on topics I feel passionate about and to bring more awareness around the illnesses I have, something that is very much lacking especially when it comes to M.E. or indeed all of my current diagnoses.

I hope, health permitting, and to be more organised as well, to hopefully blog a little more this year than I did last year.

I feel grateful to the M.E. Champion Bloggers and being a member of that community as it gives my blog a bit of recognition as well as the occasional publications of my blogs in the M.E. Association’s membership magazine as well as the access to the group on Facebook (when I actually log on!).

So here is to another year of blogging ahead. 

PS - I still do accept selective guest posts so if you would like to write something for my blog you can contact me on the menu at the top of homepage.

Looking forward to my first Christmas

My dream tree I saw

This year will be my first Christmas in my new home and I’m actually quite excited. I haven’t always been a Christmassy person but it’s growing upon me; I now even have Christmas bedding!

I’ve been dreaming of my dream tree for years which I saw a few years ago in a local garden centre and now I have my own home I can finally have the tree of my dreams!

Back in October Diane (my PA) and I went to Brigg Garden Centre as they have a massive Christmas collection. Yes October is a bit early to be thinking about Christmas but we went then before the madness began and it would be a calmer and quieter-ish day out, which it was. There wasn’t too many people which made it more manageable with my usual outing coping tools I use which made it a nice afternoon out. 

They have different tree theme collections in little clusters around the Christmas World collection including my dream tree collection so I was totally in my element once I came upon that looking at different tree ornaments and home decorations. My theme is different shades of dusky pinks, white, iridescent and gold-ish colours; they all blend together beautifully. There were so much I could have put into my basket but I had to think about my bank balance as some of the baubles and tree ornaments had quite a high number on the price tag! Plus my tree will be something I will buy for and add to each year so I just got a selection of special baubles and tree ornaments I liked alongside some generic baubles that go with my theme. 

I also managed to find a tree I liked, I wanted a pre-lit one; there wasn’t a lot of choice but I like what I chose and not having to mess around with fairy lights will be a real bonus.

Since going to Brigg I’ve collected some more baubles and tree ornaments.

Loving ballet I also associate Christmas with ballet as I always watch the ballet shown on TV on Christmas Day as well as my association with The Nutcracker so I’ve got a few ballet themed tree ornaments too. 

I’ve also crocheted in the yarn colours of my tree theme some stars to hang on my tree. Then the same yarn colours I sent to my friend Becca and she’s kindly knitted me 10 mini stockings for my tree. Then also for my tree someone who I know has custom made me a tree decoration in my theme colours and the tree ornament says ‘first Christmas in my new home 2023’. Both that and Becca’s decorations are really special as they’re handmade and the new home decoration is almost a celebration of my first Christmas here. It’s a big milestone for me.

I’m now just worrying (a) about my tree fitting in my front room and (b) my tree looking too sparse this year, I just hope I’ve got enough decorations (and my theme stays on trend in future years too).

At the weekend Dad’s coming to put my tree up so Diane and I can decorate it on Monday. It was Diane who offered to help me decorate and I think looking at her own tree she’s very good at decorating for Christmas. I also enjoy decorating the Christmas tree too.

I’m going to have Christmas Eve day and Boxing Day here on my own here to rest. I’m going to wake up here on Christmas Day but at some point go to Dad’s. 

It’ll be nice to have my own space this year so I can get away from sometimes how hectic the house can get at Dad’s, plus with my brother staying over that just got hectic written all over it!

So yes my first Christmas in my new home!

Settling into my new home

I’ve been living in my new home since April this year. I love having my own place to call home and the independence it brings and being able to do what I want; when I want (within reason of course!)

I wanted to move out for two reasons. The first was that it was my 30th birthday this year, back in June and I felt it was time to live on my own. I also needed to live somewhere that better met my needs in terms of my health.

It wasn’t easy finding a property as they all seemed to have or being given wet rooms whilst vacant and for me I needed a property with a bath due to my own needs. I looked at one property and I ticked all the boxes and it was spacious but the promised bathroom actually had a brand new wet room. That was the first property I viewed. I became number one for a number of properties but the vast majority of the time it turned out the listing was outdated and the bathroom was now a wet room or was having one installed or the area turned out to be less than ideal. I then bid for one property; I even called and begged my case for it but I was just told to call the council but then I dropped down to number four for the property so I thought no chance and moved on. 

I believe everything happens for a reason as a while later with that property now out of my mind I got a call asking if I wanted to view it as three people had turned it down. It was my second property viewing; my housing support worker couldn’t make it but I had my PA with me. I was a little unsure as going for a property is a huge commitment but my PA (who I’m really close to as she’s been my PA for a few years) urged me to say yes to the property. I can honestly say it was the best decision I’ve ever made and I’ve never looked back. I believe that first property fell through because this property is a million times better for me.

My Dad and stepmum did all the painting and decorating to get it ready for me. I’ve truly put my mark on my home now. Every time people come round they comment how very ‘me’ it is! The front room is all colourful and miss-matched. My home is also a homage to IKEA!

In the front room I have a little seating area, a craft area then a kitchen space. The latter I was unsure of the first time I saw it but I’ve made it work for me. It’s small with not much cupboard space so I’ve added an extra unit for extra space. In regards to my mobility I’m only a few meters from place to place around my bungalow which helps me so so much. Then the other room is my bedroom which is big and spacious with an almost en-suite like bathroom. Then off from my bedroom as a real bonus I have my own garden! Dad’s helping do my garden up ready for next year which will be lovely so I’m looking forward to that.

As well as my bungalow being better for my mobility I’ve also been able to have some aids and adaptations that I was in need of such as grab rails in the bathroom and my perching stool and my step and grab rail to access the garden. It’s also better having access from both sides of my profiling bed for PAs/carers as well as nurses. I’ve also made my own accommodations such as smart lighting and smart plugs which I can control on my phone or through my HomePods with verbal commands. I’ve also been able to install safety features for my home both for myself but also in case of emergencies which put my mind at rest.

I’m much happier living here. It can be tough at times I won’t lie especially on my bad health days and it doesn’t help that my care situation isn’t sorted properly so that can be challenging at times.

Sometimes it’s the little things I like about living on my own like choosing my own laundry products and choosing what food I have in. I will say I’m not a fan of doing the laundry (thankfully the cleaning is left to my cleaner) but I like it when I have my home to myself and I like the peace (esp when my neighbours are out and therefore it’s quiet) and just pausing with a mug of coffee or crafting in bed or in my craft corner or curling up with a book or when we had nice weather swinging on my swing seat in the garden.

I’m really looking forward to my first Christmas in my new home. It’ll be nicer to have a quieter Christmas too without the hecticness that goes on at Dad’s. 

I can see a future for myself here which is so lovely and I settle in more and more as time goes by.

Tour of my new home - video on my YouTube channel 

My front room with kitchen area

Book review: “My Beautiful Struggle” by Jordan Bone

Rating: ★★★★☆

At 15 Jordan was in a car accident that left her a quadriplegic. When Jordan first had her accident it was unknown if she would ever be able to move completely and would be laid in bed with her head in a halo keeping her head, neck and the top of her spine still. After an uncertain but successful lifesaving surgery to stabilise her neck fracture and lots of rehabilitation she began her new life. Thanks to the surgery she regained movement in her arms, some movement in her wrists but her hands remained clenched shut with the only limited use of her thumbs.

Jordan was determined to relearn how to relearn how to apply makeup and this became part of her rehabilitation. Let’s just say she’s totally nailed it when it comes to makeup. Yes she has to apply makeup a bit differently using her mouth to aid her hands but her makeup looks on her tutorials on her YouTube channel are AMAZING!

Each chapter of her book is named after a makeup product or look and Jordan has really cleverly woven in the theme of what she writes about in that chapter with its relation to the makeup product or look. 

What I liked about this book is that Jordan touches upon her accident and its lasting impact but she doesn’t overly focus on it. The book isn’t about her disability but it’s about her life, yes her injury plays a part but she also writes about her life in general and how her disability hasn’t stopped her from becoming successful through her YouTube channel and then onto collaborating with big brands such as being whisked off all expenses paid to NYC by the brand Urban Decay! Jordan has worked hard disability aside to become a successful young woman and her determination to be successful. To not let her disability beat or define her shines throughout her book.

In the book she also writes about the close relationship she has with her family and her boyfriend. It’s also clear that family means a lot to her. She even has her own purpose built home in her family’s back garden.

Sometimes she is asked about her disability such as about her hands in her makeup tutorials on YouTube as she edits out how she really does her makeup and just instead focuses on the look she’s filming. Jordan does touch upon the affects of her disability in the book such as needing carers when she travels to events and how her PAs do her hair for her as this isn’t something she’s able to herself. I could totally relate to Jordan on the the importance of having PAs for important care tasks but how it’s also wonderful to have carers who are also good at styling hair too!

It’s such a wonderful and uplifting book with many motivational passages written by Jordan that really clicked with me. It’s definitely not a ‘woe is me’ book about disability like some similar books to this that I’ve read. Jordan truly has embraced life to the fullest and has come out the other side going onwards and upwards there is no stopping her and I’m sure this book isn’t the end of her story.

One of the other added extras that I loved at the end of the book was Jordan’s beauty tips for skincare and makeup with tips and product recommendations. It’s definitely inspired me to get more adventurous with makeup and try out new looks and products and techniques.

I’d highly recommend checking out her YouTube channel and here’s a link to buying her book - it’s also available on Kindle.

    

Discovering iris folding

An iris folded card I made

I’ve recently discovered iris folding and I’ve fallen in love with this crafty activity. What’s great about it is that it is very easy and simple to do and it doesn’t require much energy.

I’m always on the lookout for low level activities and iris folding definitely is one. Another fantastic thing about this activity is that I can easily sit in bed and do it at my over bed table. I can also pause part way through as long as I don’t disturb my project on the template. I’m always looking for activities I can do in bed as I spend a lot of time here (like now) as I’m often limited with how long I can sit at my craft desk or in a chair for due to my different symptoms, especially relating to my M.E.

I got into iris folding when I came across the Instagram account @prettyinpaperbyb and then my friend and pen pal Laura sent me an iris folded card with my initial ‘N’. A little while later I decided to by a beginners kit from @prettyinpaperbyb and after making the two cards I had fallen in love with iris folding. It was was so simple and easy to do and the instructions were easy to follow (when you actually follow them - I forgot on the second card and had to restart. I thought I’d got the hang of it but looking at the end result I realised I’d gone totally wrong!) Soon after that I bought the deluxe beginners kit (which I’d highly recommended buying you literally get everything and more to start iris folding) and the rainbow card making kit too as I love rainbows. 

So much thought goes into these kits in terms of what is included inside them, they truly are so lovely. Plus you’re supporting a small independent business. Also what I learnt from buying the kits is Bethan who is behind @prettyinpaperbyb has CFS, Chronic Fatigue Syndrome herself. As a child her grandmother taught her iris folding and when she became ill she picked up this craft again to occupy herself. Today she’s turned it into a small business selling different kits, digital patterns, and other products for iris folding. Bethan also posts videos on social media of her creating different iris folding designs as well as tutorials.

If you’re a crafty person and you’re looking for something new to try or you’re a crafty person with limited energy I’d highly recommend trying out iris folding. My advice is to start off with beginners kit from Pretty in Paper by B - there’s lots of kits to choose from ranging in different budgets and to create different projects too. I’m sure you will enjoy this creative activity as much as I now do.

Decode M.E.

The Decode M.E. study is the world’s largest study into M.E. 25,000 DNA samples are being taken from people with M.E./CFS from around the UK with even more data from people being collected through questionnaires. The study has been expanded to now also include up to 5,000 DNA samples taken from those who have developed M.E./CFS after contracting the COVID-19 infection.

The Decode M.E. study is being led by Professor Chris Ponting who is part of the Medical Research Council, Human Genetics Unit based at the University of Edinburgh.

The aim of this research project is to find out if there are any genetic causes as to why people develop and become unwell with M.E. - Myalgic Encephalomyelitis also known as CFS - Chronic Fatigue Syndrome.

Funding has been secured for this largest ever study into M.E./CFS to see whether M.E. is partly genetic in nature and, if so, this will help researchers pinpoint what causes this illness. The study will also hopefully help scientists better understand M.E./CFS and ultimately help find treatments for the disease.

There is still time to participate in this study. The closing date for participation closes at 5pm on the 15th November. Click here to participate.

To find out more go to the Decode M.E. website and also check out their FAQ’s.

In time I look forward to the results of this study and seeing what comes of it. Questions such as did I have a genetic predisposition to developing M.E. and if so what triggered the genetic response to me getting M.E.? Also if M.E. is genetic where did it come from as no one in my family as far as I’m aware has M.E./CFS. I also hope that the research helps to develop some effective and targeted treatments specifically for those with M.E./CFS and the research with also help healthcare professionals better understand M.E. and it will generate in time better access to treatment and care as currently it’s a bit of a postcode lottery. I’ll also be interested to see if the researchers come up with correlations to other illnesses some people like myself develop.

Winter worries

As the weather is slowly getting colder there’s a big worry on my mind. I’m new to living alone and this will be my first winter paying bills. Many people are struggling with the cost of living in different ways, single parents, those on a low income, job seekers and those with disabilities.

The charity Scope in recent 2023 finding found that “On average, disabled households (with at least one disabled adult or child) need an additional £975 a month to have the same standard of living as non-disabled households.” - Scope, Disability Price Tag 2023

Disabled people incur many extra costs, varying from person to person but many disabled people find that come the colder months they incur extra costs to stay warm because of their health.

For me the cold makes my symptoms worse. My joints are more painful, my muscles go into spasm more and just generally my pain levels increase and I feel a sense of malaise. It’s also important to have a warm home because I have autonomic issues so my body struggles to regulate its own temperature, in the summer I can’t cool down so well and in winter I can’t warm myself up so well. Obviously I dress warm in the colder months, I get my carers/PAs to make me hot water bottles and I microwave my warmies as well as snuggling under my heated blanket and taking other measures to stay warm that cost less. I’m so grateful for the cost of living payments as they will help a lot hopefully if/when I get them to put them on my gas and electric meter especially on my gas meter to heat my home. It also helps that this is a new build bungalow so it’s built to be warmer and more energy efficient.

It’s still a worry though over affording the heating bills over the next few months on top of all my other expenses and additional disability expenses. I know I’m not alone in my worries over the cost of living and also the additional disability price tag burden. It doesn’t leave much room to put money aside to save up.

My main worry is falling into debt over heating my home when I know that medically I need to have a warm home to stay well. I also worry about what will happen when the Cost of Living payment runs out and having to budget to put money on my meters.

At the moment I’m managing but it’s only going to get colder from now on, I just hope I’ll be okay.