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!

How my new home is adapted for my needs

One of the reasons I moved into my own home was because I needed somewhere that would better meet my needs in terms of my chronic illnesses and disabilities.

Back at my Dad and stepmum’s there was many things I found inaccessible. Firstly and a big one one was the stairs; even bum shuffling up and down them was exhausting especially on my bad days. There was also nowhere to store my wheelchair in the house unless it was to get in the way. I also couldn’t have some of the adaptations I needed like grab rails, a second stair bannister or a key safe as well as things like a perching stool in the kitchen and my bath lift was a constant  annoyance for my stepmum especially when we had people like my brother come and stay over.

How my new home has been adapted 

Ways in which my new home has been adapted or equipment I now have to make my life easier and to support and enable me to live independently.

• My front door has a thumb lock - instead of struggling with keys (even with my KeyWing adapters on) I just have a large knob to twist to lock and unlock the door - I didn’t have this originally but when the door lock broke and the locksmith came he decided to install a thumb lock for me to make locking the door from the inside easier for me.
• Having an integrated kitchen in the front room I’ve come to love. Not having to to travel far around my bungalow is amazing and is so helpful (it’s also saved me having to buy an electric wheelchair like I thought I might have to have done). I only have my front room, bedroom then my bathroom to navigate (plus my garden). It just makes living on my own, especially with limited mobility and energy levels so much easier. I also now have a perching stool which I use in the kitchen area.
• In the kitchen I chose to buy an induction hob oven. Though my PAs/carers do most of the cooking I still like to cook and bake sometimes with my PAs and I got an induction hob because it was the safest option. It cools down very quickly after use, the risk of burning myself is lower, it’s impossible for anyone to accidentally leave it on among other things. The hob and oven also if the timer is set on it it will switch off when the timer goes off too. It was more expensive but it’s definitely been value for money especially when it comes to safety both to people and my home. 
• In my bedroom I have my profiling bed with hybrid airflow mattress. My profiling bed is similar-ish to one you’d find in a hospital. My mattress is a hybrid between a static pressure relief mattress with and airflow mattress function on top.
• To go with my bed I have an over bed table that part of it tilts so I’m able to do craft activities and write mail in bed. I waited to get this table until I moved into my new home.
• In the bathroom I have my bath lift. Without this I wouldn’t be able to get a bath.
• I also have the grab rails I need in the bathroom. There’s one near the toilet and another next to the bath so when I’m in the bath (I can’t tolerate showers) I can now use the grab rail to sit forward or change position etc independently.
• Throughout my bungalow I have smart lighting and I have a HomePod in the front room and in my bedroom. I rarely use the main lights because of my light sensitivity so I prefer my lamps. On my phone or through voice commands I can control the lamps in my bungalow. For example I can turn them on and off, to dim or brighten them or set how warm or white the glow is. Under my craft desk the plug there is a smart plug so to save me climbing under the desk all the time so like with my lamps I can control the desk plug on an off.
• To get into my garden I have a step and I have a grab rail there too so I have something to hold onto.
• When the fire service came to assess me and my bungalow they weren’t too happy with the door between my front room and my bedroom. In the night if there ever was a fire I’d struggle to get out quickly - in the morning when I wake up it takes me at least 15 minutes if not longer to sit my bed up in slow increments and at times my symptoms can make me immobile. The door would have only given me protection of 10 minutes, if that. There isn’t any legal obligation for housing providers to make changes such as install fire doors but thankfully I having an amazing housing provider and they’ve installed a fully fledged fire door for me.
• My rubbish and recycling bins are collected for me by the ‘bin men’ (I’m not sure what their official title is these days as it’s always changing) and then returned.

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

Book review: “My Beautiful Struggle” by Jordan Bone

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 made by myself

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.