Mindfulness & meditation

Mindfulness meditations is something that I do several times a day; it's something that I've built into my rest periods within my Daily Plan.

I find practicing mindfulness meditations during my rest periods helpful as it's not too stimulating and I've found learning mindfulness helps me to stay and feel more grounded which in turn benefits my mental wellbeing. I've listened to different types of mindfulness meditations such as visualisation, breathing exercises, hypnosis and body scanning to name a few. Some types of mindfulness meditations I get on better with than others and often it's a case of trying different types of meditations out to find what works best and it's something that is very individual. I also find that on different days I prefer one type of mindfulness meditation activity over another.

As well as the type of mindfulness meditations I engaged in I've also listened to mindfulness meditations on different subjects such as pain management, anxiety, happiness, gratitude, stress, trauma and fear of the future. Some of these have been mindfulness meditation courses whilst others have been single mindfulness meditations.  I've even listened to crisis mindfulness meditations which are short exercises to help me deal with a particular problem.

There are plenty of mindfulness apps out there; this year I decided to sign up to two apps: Headspace and Relax Melodies (this one you can find my review of here). My Apple Watch also gives me free access to the daily mindfulness mediation by Calm - I personally would recommend all three of these but there are plenty of other apps out there too; these are just the apps that I've found I get on best with for myself. You can also find free mindfulness exercises/meditations on YouTube, though some on there I've found get interrupted by adverts which isn't what you want when you're trying to relax!

What exactly is mindfulness?

Mindfulness is the quality of being present and fully engaged with whatever we’re doing at the moment — free from distraction or judgment, and aware of our thoughts and feelings without getting caught up in them. - Headspace

Meditation is the exercise which leads onto becoming more mind-full this leads onto a state of living mindfully in our daily lives and being present in the moment. This is a skill that I'm still very much learning and trying to be more aware and conscious of and it takes a lot of time and practise.

The benefits of mindfulness

Emotionally mindfulness helps us to feel a greater appreciation and gratitude of the world around us. Mindfulness also helps us to better understand our own selves in terms of our needs and what emotions we may be feeling and maybe how to improve our own wellbeing.

"Mindfulness also allows us to become more aware of the stream of thoughts and feelings that we experience... and to see how we can become entangled in that stream in ways that are not helpful... This lets us stand back from our thoughts and start to see their patterns. Gradually, we can train ourselves to notice when our thoughts are taking over and realise that thoughts are simply 'mental events' that do not have to control us." - Professor Williams, Mindfulness, NHS

Mindfulness helps people better deal with stress, anxiety and depression but it not only benefits people's mental health it can also improve people's physical wellbeing. In one research study mindfulness was found to improve patient's cardiac health. It's also been shown to help with the immune system and with pain. - mindful.org "Mindfulness Meditation Is Good for Your Health"

Dyson Fan Review

So last year I deicided to invest in a decent fan for my bedroom. I had my checklist: quiet, air purifying, and a good energy rating along with positives reviews.

I looked at many different makes and models ranging in various prices. I also read lots of reviews on places like Which? to narrow down my search. 

I settled on buying a Dyson fan which was reviewed to be the most quiet and have the best purification and the filters where said to last quite a long time and they didn't require cleaning as some models I looked at the filters needed regular cleaning. The Dyson fans seemed tone rated as the quietest and most energy efficient and the purification was also rated quite highly.

Price wise is was on the high end compared to say ones I looked at that where below £100 but I wanted something that was good quality and would last rather than finding myself having to replace it after a few years or have to keep buying new replacement filters regularly.

As I'd settled on a Dyson fan I looked at their different models and as I was looking I came across the Dyson Purifier Hot+Cool ™. When I saw that one I thought that rather than just having a cooling fan which I'd only use for part of the year if I went for this one I could use it all year round and get more use out of it for the money.

Positives

On the cool mode the fan is nice and quiet (depending on air flow speed) and quite effective at cooling the room down (though see the first point on the downsides below with regards to the fan on cooling mode).

It was really easy to set up when it arrived when I first bought it and to link to to the WiFi so I could link it with the app.

The first one like I've mentioned is that I can use it all year round. On hot days I can turn on the cooling fan; on high pollen day (as an example) I can turn the fan on low to purify the air in my room to help with my allergies and asthma then on cold days like in winter I can warm my room up which is more efficient than turning the central heating on when I'm just using my bedroom.

With the heat function I can set what temperature I want my bedroom to be at; once it's reached the set temperature the heater will turn off and monitor the room temperature so t stays at the desired temperature. Also I do find that the heater does warm my bedroom up fairly quickly.

Having the hot and cool feature is great for my autonomic issues when my body can't decide what temperature it is or getting my body to cool down or warm up.

The magnetic remote is helpful. It can either be affixed to the top of the fan or I can keep in in my organiser next to my bed. There is also a Dyson app on my phone and iPad which displays the air quality and has a remote within that app too so there are plenty of ways I can control my fan. Even better I can voice control my Dyson fan via Siri (it also works with Alexa).

Also on the phone app you can alter the angle of the fan so it blows in the direction you want it to. You can also set the oscillation to what degree you want to oscillate (45º - 360º) and where you want it to oscillate between on the app. You can also set the osculation on the remote control too.

You can set the fan at the rate you want it to blow out, or if I'm feeling hypersensitive I can have the fan blow out the back. Alternatively you can set the fan on auto mode and it will monitor different types of airborne pollutants and the air quality and it will auto adjust the fan rate to purify and bring the room down to a good air quality level.

The fan can be put on 'night mode' so it goes even quieter and the LED screen dims.

You can set a timer in the fan which I find helpful at night or when I just want to warm my bedroom up a little.

I find that the fan when either using it on cool or heat mode it doesn't dry out the air in my bedroom.

The fan and app provides lots of information. On the fan's LED screen you can check the air quality and different types of pollutants and their levels in the air which is displayed with a colour coding. The LED screen also lets me know the status of the filters and the humidity in the room and the room's temperature. 

The image here is the LED screen on the fan displaying the air quality over the past 24 hours. As you can see the air quality has fluctuated but stayed mostly green which is what you're aiming for. On the graph you can see some yellow which was when the air quality became poorer. On the screen you can also see the different colours going from green to red with green being a good level and red being the poorest air quality level. Even using my aromatherapy room sprays get picked up by the fan's constant air quality monitoring.

Downsides

With the heat setting I can set the thermostat to bring the room up to desired temperature; I would have liked (and I thought that it would do this) is the same application with the cooling fan where I can set the thermostat to bring the room down to whatever temperature I would like the room to be cooled down to.

The heater is louder compared to the cool fan mode.

The price point was quite high.

When on auto mode it does pick up the tiniest things in the air like if I use my aromatherapy diffuser or hand sanitiser and the air flow will turn right up.

It would be good if the app extended to the Apple Watch.

Final conclusion

My Dyson fan was expensive but so far I've found it to be good quality and the filters will last a long time (saving me money on not having to replace them or clean them frequently) - the filtration is great and I've found it to help my asthma.

Having multiple ways to control my fan is great. There's the remote, the app and Siri (which you can create multiple of your own voice commands).

I feel that my fan will prove a great long-term investment and having the cooling fan and the heater means I can use it all year round so I'm getting more out of what I bought proving it more financially worth it especially with it's good energy efficiency rating.

All-in-all I'm really happy with my purchase and I've made a lot of use out of it over the past year or so that I've had it and I would recommend this or one of the other Dyson fans. Also in my research for this blog post I've found that Boots now sell this fan so you could (if you're in the UK) earn some decent amount of advantage card points if you choose to buy it from there but I would say to check the warranty on the different places which sell Dyson fans and to purchase it that comes with a good warranty length and maybe even tech support.

Life with a disability - Getting the balance right in life & online

One topic that is being really talked about at the moment is the chronic illness community online sparked off by a recent BBC documentary. 

When I first became ill I turned to the chronic illness community online; it gave me a place in which I could turn to, ask questions and receive advice especially as someone newly ill and learning to adapt to my new "normal". It also gave me to an extent a network of support from others who where chronically ill/disabled especially those who where around the same age as me.

Most of the groups I turned to where on Facebook as that was the main social media platform I was using at the time; I maybe also had Instagram to (though I don't think I did when I first became ill) and Facebook was the place for groups. I also started my blog in 2018 which as the time I entitled 'Diary of a Zebra' and it mainly focussed around my life with different illnesses and topics around disability as well as guest posts from others with chronic illnesses and disabilities and I avidly made use of different illness awareness days/weeks/months. I also documented through photographs my story of illness.

However as time when on I felt entrentched within the world of chronic illness and disability on top of dealing with my own ill health and for a time being ill was all I was and had going for me. It was who I was and it became my identity.

During my time in hospital in Leeds part of my care was some individual psychology sessions in which it gave me an opportunity to talk to someone who knew about my illness and dealing with people who where chronically ill. In those sessions I grieved for my old life and explored my life with my disabilities and the identity that came with that. My friend Ruth has this quote: "Your life is like a piece of cake and you have ten portions, but only one portion is your health." I began to realise who I really was and that I was more that the diagnosis' I'd been given. 

I'd already dwindled away from Facebook but I decided to leave the groups I was in; I didn't realise how many I was part of and I saw how negative and unhelpful and in some ways how unsupportive these "support" groups where. It was around new year and I noticed in several groups one member had posted in several similar group the same post sharing the number of seizures he'd had that year. Other members where replying with how many seizures they'd had; it was almost like a completion for who'd had the most, the longest and the most serious seizures that year. How is it a 'support group' when people are in competition with each other? I now also see this on Instagram and somewhat on YouTube which is the main social media platforms I use these days. I see people determined to receive certain diagnosis or give "advice" to people that they may have a particular illness. In people's bio's its a game as to has the most letters abbreviating how many illness they have and who has the most letters. I see people post the most random videos and photos of their hospital appointments and stays, of surgeries and of medical devices and supplies. Some of these photos I get; its to help raise awareness and to let often young women with chronic illnesses/disabilities know they are not alone but sometimes I see a photo/video and I wonder why they are sharing such a post or how they can be well enough to do so. I have found some really good friends with chronic illnesses/disabilities though social media but I would say that these people do yes post about their health but it's in moderation and a healthy balance of health and non-health related content.

Back at the beginning of last year whilst I was in hospital I changed the name of my blog to encompass all ten portions of who I am and to try and move away from the focus of my blog just being about my health. I try to on both my blog here and my YouTube channel to balance out health and non-health related content as much as I can depending upon what I feel needs to be shared and talked about. I also now think a lot more about the photos I share on my Instagram account and most of the time now I don't avidly post (partly because my life is pretty boring and also there are better things to spend my limited amount of energy on). Yes I do post the odd health post [on my personal Instagram account]; generally for awareness but I'm more cautious with what I share and I'm more hesitant in sharing with something that is deeply personal aka my health. I generally only share to raise awareness such as recently for Severe M.E Awareness Day but even then I feel I'm more careful now with what I post on Instagram and YouTube.

Reflecting on how I post now compared to how I used to post about my health I feel I have a healthy balance. Yes my YouTube is more I'd say disability focussed but I do try to get plenty on non-health related videos shared and the same for my Instagram. I feel not over focussing on my health on social media has helped me in finding my identity and that healthy balance as away from social media my disabilities are my full-time job at present and emphasising that online I don't feel is necessary. Sometimes I do worry that because I don't post about my health that much that people don't realise or don't know/forget that I am chronically ill.

Another thing that I've done to make my social media presence more healthy is to be careful with who I follow or the YouTubers I watch. I'm also careful with friend requests on Instagram. I try not have chronic illness accounts that are too OTT about their health, like recently I had one request and in their bio in bold capital letters they'd pot that they where 'seriously chronically ill' - as though they where they most chronically ill person ever and some of their posts where pretty unhelpful and wanting sympathy for their struggles with their health. Again this is something I don't partake in. I also I would say on YouTube I probably do watch more content creators that do have disabilities as I find I can relate to their videos, but I try to not watch too many health relate videos and follow say crafting or makeup artist YouTubers. I have enough of my own disabilities in my own life to deal with let alone filling my life with more disability content. In terms of Instagram I try to follow fewer accounts by those with disabilities but those I do follow I try to follow those that have a disability/not related to disability posting balance and I try to balance this out like I do with YouTube on accounts that are about other things I like such as crafting, hand lettering, letter writing, envelope art, make up etc. 

It's all about getting the balance right and releasing and seeing to all ten portions of who I am. I won't deny that the disability portion is't there as it is, loud and clear, but it's not the only portion in my life.

Review: Crippled: Austerity and the Demonization of Disabled People

Crippled: Austerity and the Demonization of Disabled People by Frances Ryan
My rating: ★ ★ ★ ★ ☆

This book is so insightful. It is heavy on facts and statistics but this backs up to points made by the author and the facts and statistics given help support the depth that the author goes into on the different topics she covers in the book.

The chapters are split by different disability related topics such as housing, women, children, work, employment, education and healthcare.

As a young disabled adult I already know the challenges I've faced such as claiming benefits as I'm unable to work and to help me with the extra costs I incur because of my disability and how claiming these benefits this difficult process in filling out the paperwork and being assessed by people who have little knowledge of disability. Or difficulty in accessing healthcare including medication and specialist services (which are often dictated by how much these things cost) and also my experience of desperately trying to get a care package through adult social care.

This book made me realise how hard it will be for me when I try to return to education and the challenges I'll face at University to get the support I need there both for my education then for my accomodation and then the challenges I'll face when I try and get paid work that will fit around my disabilities

For me I enjoy statistics and it really helped paint to the picture of the hardship, ablism and austerity (and much more) that disabled and chronically ill people in the UK face in all aspects of their life.

The book made me realise, despite the many challenges I have faced and will face that I'm one of the lucky ones. I haven't had to go to a tribunal to get my PIP (Personal Independence Payments) that will help me with the extra costs of having a disability. Though I am struggling to get some healthcare services my experience so far has mostly been great and I feel blessed to have such as good healthcare team.

I have access to my specialised prescribed nutritional shakes unlike some disabled people interviewed in the book who aren't able to access specialist meals or can't afford electricity to store their refrigerated medication such as insulin.

As well as the book being heavy on facts and statistics it also features a lot of case studies of disabled people which help, I felt, made the book more relatable and realistic. You could hear real stories of real people and the real situations and challenges that these people featured have faced.

I think that featuring case studies alongside the factual elements and statistics have made this a really insightful (I listened to it as an audiobook which is great for accessibility).

However I don't think that this book would be for everyone as some people may find the facts and statistics cited too much - it did take me a while to listen to this book partly because I wanted to keep up with understanding the book but I also had other books on the go too - but if you can I would seriously recommend to give this book a go at reading/listening to.

View all my reviews

Chronic illness & special occasions

Special occasions can be hard when you're chronically ill as it may mean missing out or not being able to participate s much as you would like to. I find this really hard myself and though I've come to a point of acceptance that I'm not able to do this or I'll only be able to make a short appearance I do still feel a sadness but sometimes resentment towards my ill health for stopping me from enjoying social occasions whether this be my own birthday, Christmas or family get-togethers like we've recently had.

I only know my Dad's side of the family and my Dad had two other brothers and a sister and one of his brothers and his sister live away - my uncle with his wife and my sister with her husband and son. My other uncle and his girlfriend live locally but we don't see then loads compared to hw often other families see each other. So for us seeing family is always a special occasion that I look forward to.

However because of my chronic illnesses I'm limited with everything that I ca do and there are no breaks from it so I can't just press the pause button to enjoy special occasions.

The past few days Saturday to Tuesday (today) we've had a family get-together (on my Dad's family side) as one of my Uncle's has just turned 60 so my Dad's brothers and sister (and one of my cousins) have travelled from where they all live for the occasion. As it was a special occasion my Dad arranged some family things for everyone to spend time together but there was only one thing on the agenda that I could do and even with that event being here at home it was a challenge and I couldn't mange to stay for the whole party.

This felt hard as Naomi wanted to be able to do more things; things I enjoy or haven't done in a long long time and make the most of the rarity of our family all being together. I suppose you could use that popular acronym FOMO - the Fear Of Missing Out to how I feel as I do feel like I'm missing out and it's hard being stuck at home whilst my family are all together having a lovely fun time doing enjoyable things together without me. Even if I used my wheelchair I still wouldn't have been able to participate as my body can't cope with being out for long especially engaging in activities for several days in a row and it would have lead to a big crash and it would be very difficult for me to recover from and would have taken a long time to get back to my level of 'normal'.

I have to be so careful with where I put and spend my precious energy and my symptoms don't stop for any occasion. There are no days off from being ill unfortunately so you just have to do your best to embrace and live your life within the limitations posed by my illnesses.

Dad when he was planning the family get together did plan to have the party on Sunday here at home so I could at least join in with that and because it was here I could easily go to my bedroom when my body had had enough. I say my body because I, Naomi, hadn't had enough - it was my body and my symptoms that had enough when I retired to my bedroom. I pushed my body as far as I could because I wanted to make the most of seeing my family. I do find that sometimes there are times where it's okay to push myself which are actually generally at special occasions. During the party I did step back for a while; I went and sat away from everyone to somewhere quieter to dull down the sensory overload for a while. Doing things like that I find helpful.

Tips for coping & enjoying special occasions*

1. Pace yourself - you don't have to do everything or all at once.
2. Think through what aspects you'll join in with and which parts might be best for you to sit out of.
3. Help out with the preparations as this can be just as exciting.
4. If it's an occasion like Christmas or your birthday you can decorate your room to help you feel like you're part of the celebrations.
5. It can be hard if you're not able to eat the special occasion meal such as Christmas dinner or birthday buffet but you could maybe select one food if you're able to eat a little so you feel like your still part of the celebratory meal - a small piece of cake will be just as enjoyable as the whole buffet.
6. Spread out opening gifts, this could be throughout the day or over several days.
7. When it comes to opening gifts to make things easier you could ask family and friends to make them easier to open such as by using less sellotape or putting gifts into gift bags.
8. You could film yourself opening gifts and share this video with family and friends so they can see you opening their gifts to you.
9. If you're not able to participate ask for people to take photos and videos for you to watch and look at so you can see what went on.
10. If you are able to participate in an event, even if it's for a short while take photos and videos of yourself with your friends and/or family so you have something nice to look back on.
11. If you're not able to attend a special occasion ask for someone on your behalf to pass on you best wishes, congratulations, happy birthday or other sentiments. Alternatively you could write a card with a message to be given to the person the special occasion is for so they know that you are thinking of them.
12. Remember that your family will be understanding if you're only there for a short while or not at all.

* Advice taken from 'Severe M.E: A Guide to Living' by Emily Collingridge - (many of the things listed I've done myself and they do help a lot.) Just as a side note if you have Severe M.E I would highly recommend this book which you can purchase here

Living with Severe M.E - Severe M.E Awareness Day

The reality of Severe M.E

In the UK there are around 250,000 children, young people and adults with M.E - 1 in 4 of those people will have either Severe or Very Severe M.E and I am one of those.

My M.E didn't start out as being severe. I was at university when I got unwell and as a result I had to leave my studies. At the time no one could give me a definitive answer as to what was wrong with me; my symptoms where just 'medically unexplained'. I was getting more fatigued and exhausted and each time I saw my GP I was told that I had Post Viral Fatigue Syndrome, but there wasn't a key virus that I had unlike the experience of some people with M.E and now those who have had COVID and gone of to develop Long-COVID.

Then on the 4th July 2017 I finally got my first appointment with my neurologist regrading the possibility that I had FND; he confirmed that diagnosis and alongside that he also told me that I had M.E.

I came home with a diagnosis that I'd never heard of. I wasn't referred onto anyone or anything about my M;E and locally there isn't a service I can access. So I spent my time learning what M.E was and the best ways to manage it.

Over time my M.E got worse; I didn't realise it at the time but looking back over the time whilst I've been ill there are so many things that I struggle or can't do now compared to other times when I first became ill and the things I could do back then.

Defining Severe M.E

My M.E is now classed as 'severe' based on the M.E/CFS Disability Rating Scale. 

This is a generalised summary of the experiences of people with Severe M.E though it's a very individualised illness so some of the things on the DRS may differ to the experiences of what someone with Severe M.E may experience or have difficulty with:

Severe

70% Disabled: Moderate to severe symptoms for most or all of the time. Confined to the house for much or all of the time. Normally requires help with various aspects of personal care and meal planning and preparation, possibly on a 24-hour basis. Very limited mobility. May require wheelchair assistance.

80% Disabled: Moderate to severe symptoms for most or all of the time. Only able to carry out a very limited range of physical activities relating to personal care without help. Requires help with meal planning and preparation. Frequently unable to leave the house and may be confined to a wheelchair when up, or spends much of the day in bed. Unable to concentrate for more than short periods of time. Usually requires daytime and night-time supervision. 

 - M.E CFS Disability Rating Scale for Severe M.E

Due to the fluctuating nature of M.E many people will fall between one percentage and another depending on whether they are having a good or bad day or periods where they are more well with their M.E but then may experience a crash and so their M.E will fall into a different percentage category on the DRS.

The positives out of having Severe M.E

Despite how incredibility difficult, challenging and exhausting (and much more) having Severe M.E is it has brought some positives into my life.

I now feel that I have a greater sense of appreciation and gratitude for things in life especially small things like a letter from a friend or having clean washed hair or spending time outside even in the rain when I go out for short walks in my wheelchair. I'm also grateful for the support I have in my life from both professionals and friends.

When I first became unwell I turned to support groups on social media but I found many less than supportive; I'm not one for Facebook anymore but Instagram is my social media preference and over time I've come across different people and gotten to know them and many of whom I'd now consider to be good friends. We support each other through messages or some through letters and it's been a much more positive experience for me. I can turn to my friends and we can support each other and offer advice or share experiences such as for me recently I've been talking to some of my friends about having catheters but at the same time we don't just talk about health stuff, we talk about our pets, hobbies, projects we have on the go, books and much more which I feel is so healthy as we are more than just a bunch of illnesses and symptoms.

I wouldn't have started pen palling if I hadn't have become unwell. Letter writing is a massive joy for me in my life and it brings me so much happiness to know that the person receiving my letter will bring a smile to their face ad maybe even postal workers too - I know that the ladies who work in our village Post Office love to see my letters.

As well as letter writing I also wouldn't have started blogging or my YouTube channel either. I love blogging and sharing videos and it's a nice hobby to help raise awareness of living with disabilities like M.E but I share posts and videos about non-health related content too as like when I talk and write to my friends there's more to me than just being ill so my blog and YouTube channel is about all aspects of who I am and my life.

I love my advocacy work too that I've done with the M.E Association and Action for M.E. With these two organisation I've written posts for their website and membership magazines and also done some collaboration videos too.

M.E Organisations & Charities

➜ M.E Association Helpline: 0344 576 5326 ➜ Action for M.E Helpline: 0117 927 955

➜ Smile For M.E
Delivering Smile parcels to those living with M.E & their carers

Why I'm not a warrior, fighter or superhero

NOTE: I just want to say before I continue with this post. I'm not against the terms and people referring to themselves as 'chronic illness warriors' or their 'fight' with whatever illness they have and other such language, it's just that this language doesn't sit with me.

You'll often hear of of people with illnesses referred to themselves as 'fighters!' or 'warriors!'. Even when someone has something like a simple cold may say 'I'm fighting a cold!'. This all makes it sound like we're in a war zone with our bodies and it's as if sheer willpower will get you through the day.

I'm chronically ill but I don't think that makes me a 'warrior' or 'inspirational' for living despite this. I'm just Naomi and I so happen to be disabled and living with a set of chronic illness and symptoms. Yes life on a day-to-day basis is a struggle and sure it takes a lot of effort to do everyday tasks and I require help with things. Then on my bad days when I can't get out of bed it's not because I've not tried hard enough or 'lost the battle' to get out of bed. I'm just simply not well enough to get out bed.

When it comes to chronic illness there isn't an 'after' or 'when I'm well again'. It's a journey of grief, acceptance and coming to terms with for the life I have now and learning to go with the ups and downs of good days and bad days and in-between days. I am now trying to let go of the life I did have planned out for me especially when it comes to my education and the career I'd always wanted (and I still hold out on the hope that one day I can return to that). Some days the grief for that lost life I planned is still very raw. 

When I first got ill ill I did feel like I was fighting against my symptoms which at the time where 'medically unexplained'; hoping they would just be something temporary, but then over time I had to accept that this wasn't going to be something that was temporary. That mainly kicked in when I got my M.E diagnosis. When I got that particular diagnosis it was like a weight had been lifted over what I had been wondering what was wrong with me (I also had my FND diagnosis but that's a different story). After my M.E diagnosis I wasn't really told anything about M.E so I had to go home and research things myself* and that made it sink in that my health problems where there for good but also that it wasn't anything that I was doing wrong to make my body feel the way it did and that there was nothing to fight against. When I was fighting against my body I was just stressing it further and probably making myself more ill in the process.

Accepting my disabilities has been hard and it took a while for me to refer to and see myself as 'disabled' and many times I haven't wanted to accept the fact that I will be ill for the rest of my life to one degree or another and sometimes I find myself hating my illnesses or hating the fact that I live in a broken body that can't be fixed.

Two things really helped me with this. The first being YouTube; watching YouTubers like Gem at WheelsNoHeels, Jessica Kellgren-Fozard (her disability videos), Hannah Hodgson, Tania at When Tania Talks and my friend Becca at Bex’s Life and connecting with others with the same disabilities as mine online, some of whom I've become pen pals with*. 

Of course it was and still is really difficult especially when I still feel so young to be dealing with being chronically ill and seeing my life and future being turned upside down but something that I never planned for or chose. It's especially hard seeing people around me my own age like my brother doing many of the things I planned and want to be doing and achieving. This is where I’ve found it helpful to find people around my own age to talk to about being young and disabled in a healthy and supportive way.

Going back to the subject of this post to me the word 'fighting' sounds exhausting. Sometimes you just want to take off your armour and talk about how hard it is and how it sucks to be chronically ill. When this happens I don't want to be told that I'm inspirational and to 'just keep fighting/going!' or to 'battle on!'. I just want someone to listen to me and for me this where I've found therapy or talking to friends with disabilities helps. My friend Ruth has this quote: "just keep swimming and when you can't swim just float" and sometimes I just want or need to float for a while.

It's also been important for me to not to make my illness my identity; it's important to separate my health from who I actually am. When I first became unwell yes it did feel like it was all I had in my life; being disabled often feels like I full time job. Yes I am limited and defined by my health, but it's not the sum total of who I am. My health is part of me, (some of it's even in my genetics) but there are so many other aspects of who I am that aren't to do with being ill. I find it so sad on social media when I see people so consumed by their illness and it seemingly to be the only thing they have going for them.

I'm not totally against the use of terms like 'warrior' and 'fighter' and I will use them in my hashtags on social media. I like how these terms unite those living with chronic health problems - like for example how I'm part of the Chronic Warrior Collective and writing for The Mighty.

Living with a chronic illness (or several) isn't something I chose so it doesn't inherently make me brave or inspirational. I don't need to be clapped for every little thing that I do. I am just living a life that just so happens to involve the fact that my body doesn't work in the way that it should and won't ever be completely mended.

For me giving up the fight helped me accept that I was chronically ill as opposed to chasing after trying to fight a battle that I was never going to win and for my body to be fixed and healed and be whole once again. That's why I don't see myself as a 'fighter' or a 'warrior' but I'm not against those that choose to use those terms, it's just not for me.

Extra Imformation

➜ If you're newly diagnosed with an illness I'd recommend you turn to reputable sources of information like charities dedicated to your illness. You could ask the clinician who has diagnosed you for some information that you can read or ask them for any particularly relevant websites you can read about your new diagnosis. I've recently written a blog post 'My advice to someone newly diagnosed' which you may find helpful.

➜ Connecting with others online is great but I've learnt over time that this has to be done carefully and you need to find the 'right' people for you. Personally I prefer and get on better with those that don't solely fixate on their health but more see it as part of their life but have other things in their life too. I find that this is more healthily. My advice with online support groups is to find the the right groups for you if you do want to join them as they're not for everyone. At first I did find a great online group but it's not as active anymore. The main problem I've found with only support groups is that there can be some negativity which is counterproductive to the group being their for "support".

Shuffle Playlist

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

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

What's on my phone?

One Second Every Day

I've been doing this project for a couple of years and it wonderful for looking back upon what I've been up to and what has gone on in my life. Each day I take a one second video clip (or photograph) for every day of the year.

Expense

I find this a great app for monitoring my spending on incoming money as well as helping me save and stay on budget.

With the Expense app I can create different 'accounts' so I can separate for example my disability expenses from my every day spending. You also have different categories in which it tells you how much you're spending on what for example clothes, toiletries, postage etc and you can set limits on how much you spend on each category. It also produces reports on where you incoming and outgoing money is coming and going from so say for example if you see that you're spending too much on a particular category you'll know to spend less in that area if possible.

You can also make notes and take photos of things like receipts. . 

Mindfulness & Soundscape Apps

I use quite a few mindfulness and soundscapes apps. I find them especially helpful for my rest periods - I find it more restful as I've learnt to listen to a mindfulness and soundscapes when I have my rest periods rather than say for example listen to a podcast as that is still stimulating.

The main apps I use and enjoy are Headspace, Relax Melodies, Calm, Sleepiest, White Noise, Birdsong.fm and the RSPB Birdsong Radio.

Podcasts, EasyReader & BBC Sounds

EasyReady is the app that plays my audiobooks from the RNIB Reading Library.

Then for podcasts I use the Apple Podcasts app and then I also have the BBC Sounds app of podcasts but also to listen to BBC radio stations, music and BBC podcasts.

I enjoy listening to the radio and some of my favourite podcasts is the BBC Ouch! Disability podcast, the ME Show, The Missing, Beyond Belief, A Quaker Take, The Documentary, The Enquiry, Beyond Today amongst others.

Games

Some of my favourite games to play on my phone are pyramid (a card game), Angry Birds & Friends, 1010, 2048, and Two Dots.

PicCollage & Canva

I find these two apps great for making graphics and editing photos for my Instagram, iMovie (for IGTV/YouTube content), my blog and collages to print on my Sprocket. I find the free versions of both apps still offer me plenty of features to create/edit graphics and photos.

iMovie

This is the app that I use to create all of my videos for YouTube and other projects.

Clipomatic & Clips

These apps I use to add subtitles/CC mainly for Instagram and IGTV (Instagram TV) as I aim to be as accessible as possible online

Pinterest

I mainly use Pinterest on my laptop or my iPad but I always find it helpful to have Pinterest in my pocket.

Health Apps

Symple

This is a great app to monitor and rate symptoms throughout the day as well as adding in factors that may affect your symptoms, for example 'cold weather'. There's also a journal section to make notes.

Medisafe

This is a medication app. On it it has all the medications I take - regular and as-and-when-needed (PRN) medication. With my regular medications at say 12pm it alerts me repeatedly over a set time period and it tells me which of my medications I need to take and I mark off when I've taken them. The app then can give you a report on your medication adherence.

With my memory problems I find this app helpful alongside my alarmed pill box and the dosset box that the pharmacy deliver my medication in. Most of all it helps me with my PRN medications as I'll mark what and when I've taken it so if I need a second dose I know when I last took it so I can then know when I can next take it e.g. 4 hours between paracetamol doses.

My Water

This is another really helpful app to monitor my fluid intake. I set my daily target of how much I want to drink each day and each drink I have I add it into the app so 'coffee, water, herbal tea' etc. It will then tot-up during the day how much fluid I'm taking in so I know when I've reached my target or more-often by how much I've gone over my set target.

The app also regularly reminds you during the day to drink.

Skin care routines when you're chronically ill

Okay, so I'll be the first to admit that I need to get into a better and more regular skin care routine as quite often when you have a disability everything is about priorities and prioritising what is the most important things to spend my energy on. Saying that there are ways and things I have done to simplify my skin care regime so I am able to have a daily skin care routine that is manageable to do alongside my disabilities. I am getting better at cleansing my face at least once a day when I'm well enough.

My advice is if you do struggle especially with fatigue is to just have a simple skin care routine that works for you; you don't need to use lots of different types of fancy products to look after your skin. Like for example I don't bother with eye cream as it's one less things for me to do and my eyes are perfectly fine with me not using eye cream.

For me I do rely upon my PA for the 'big' things in terms of personal care like having a bath (which I prefer and find easier than showering unless I'm needing a 'quicker' wash) and sometimes when I am in the bath I'll wash my face or if I'm getting tired I'll get my PA to do my face for me just to save that little bit of energy if I don't have it or if my hand are out of use because they're in spasm for example. So  PA will wash, exfoliate it, spritz it etc and if I want to apply a face mask and rinse products off etc.

So twice a week in the bath I'll wash my face with foaming face wash (sometimes if I'm having a good day I'll wash my face at the sink and use face wash) and every-so-often if I feel my skin needs it I'll use exfoliator. I then use a rosewater toning spritz spray and let my face air dry before putting on moisturiser. If it's a day where I haven't washed my face with face wash I'll use cleanser and take that off with a reusable cotton pad and then spritz my face and put on moisturiser. Depending on what time of day I get around to doing this if it's before bed I'll use a nighttime moisturiser; if I've washed my face in the day I generally just use Aveeno moisturiser. If my face is oily I might put some talc on my face, usually my face is the most oily when I wake up. I also have some serum for when my face breakouts with spots.

I find just using these few product manageable in terms of how much energy it takes me to do my skin care routine and I find only using three products on my face - face wash/cleanser, toner and moisturiser just fine. I know some people have a lot more complex skin care routines than I do but this works well for me and my limited energy.

If I'm not able to do this; for an even quicker skin care routine I'll just use a face wipe from the Botanics range and then use moisturiser. So I do have some flexibility in how I can cleanse my face daily depending on what kind of a day I am having.

I like to use the Boots Botanics products; mostly I use their organic range but some products aren't in that range so I'll use another range in the Botanics collection. I've just found that these products are the best for my skin.

Occasionally I'll indulge in a bit of self-care and put a face mask on which I enjoy. I've collected a few some gifts or freebies. I have a mix of packet/tube face masks and sheet face masks; I prefer the latter. I've also used under-eye mask patches which I've received when I used to subscribe to Birchbox and from when I used to get my monthly Birchbox I do have the odd face products like I have a nighttime face mist which I use and the night moisturiser I'm using at the moment is out of a Birchbox.

To take off makeup (a) depending how much I'm wearing and (b) depends on how tired I am to take my makeup off and cleanse my face. I will use eye makeup remover (from the Botanics range though I'm using one from my Birchbox currently), then I'll use a face wipe then I'll either wash my face and/or use cleanser. I'll use my spritz then finish off with night moisturiser.

These reusable cotton pads I actually make myself and they are a must-have in my skin care routine. I gave some to my PA and her and her daughter love them too.  With my reusable cotton pads I'll use them for a few days rinsing them out after use and hanging them to dry and then I'll put them in the wash - here's a tutorial for them. They are much more environmentally friendly than single use disposable cotton pads though I've found they don't work unfortunately with liquids so I still occasionally do use the odd disposable cotton pad here and there but very rarely, probably only when I use eye makeup remover or nail polish remover and similar liquid products.

Calling myself disabled

I have a list of chronic illnesses which I have been diagnosed with. None have a cure and they will now be in my life to some degree in one way or another for the rest of my life.

The definition of chronic illness goes as follows:

"Chronic conditions are those which in most cases cannot be cured, only controlled, and are often life-long and limiting in terms of quality of life."  - NHS Wales

Every moment of my life and the decisions I make involve taking my illnesses into consideration and they have redefined how I see myself and how the world sees me, both positively and negatively. 

Now I move onto the word 'disabled' - dis abled. How you are unable to do something. Here is the dictionary definition of disabled: 

According to the Government...

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

What ‘substantial’ and ‘long-term’ mean

• ‘Substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed

• ‘Long-term’ means 12 months or more, eg a breathing condition that develops as a result of a lung infection

            - Definition of disability under the Equality Act 2010, GOV.UK

So, by definition under law, I am 'disabled'.  

The journey to disability

When I first became unwell it was just a few symptoms which gradually worsened and grew in number but I just put them aside and hoped that it would just be a temporary thing.

For a number of years my symptoms were classed as 'medically unexplained' though certain diagnosis' where mentioned. I did have other illnesses such as asthma, allergies and a spinal curvature which I've has since I was a child but I never saw them as an illness that I had - they where just there.

Part of beginning my journey into the world of chronic illness was (a) accepting my now situation with my symptoms and (b) becoming part of the chronic illness community and being around others with the same symptoms as me made me see that I was chronically ill. This was also coupled with the acceptance of my health situation and knowing that it wasn't going away any time soon.

Getting my diagnosis' helped me a lot. Finally I knew what was wrong with me and non of it was me having done something wrong. Grief then struck in even more fully knowing that my illnesses was something that I was going to have to live with and get used to and that I'd have to learn how to live with them. It was then that I began to class myself as 'chronically ill'.

It took me a little longer to call myself 'disabled' and this was a gradual process. I was dis-abled by my symptoms and illnesses; I was less able to do certain things.

What makes a person 'disabled'?

We've already explored the definition of disability under the Equality Act 2010, but who decides if someone is 'disabled'. 

Is it the government when they decide you're entitled to be in receipt of disability benefits such as PIP? - Personal Independence Payment (the new name for Disability Living Allowance), the money to help you cover some of the 'extra costs' that come when you have a disability. 

Or is it your local council when they deem you to be entitled to a Blue Badge so you can park in disabled parking bays or issue you with a Disabled Bus Pass? (Both often decided on the points you receive on you PIP entitlement though with Blue Badges new changes have been brought in to widen out who can be in receipt of one.

Calling myself disabled

This came as a gradual thing. I started to feel more dis-abled and restricted in an abled society especially when I'm out in my wheelchair. I also found myself needing to use disabled/accessible toilets and changing rooms and I needed someone with me whenever I left the house both. 

Though I'd left the chronic illness community which I felt was more of a negative environment that a positive and supportive one I felt more surrounded disability; maybe unconsciously trying to find people like me. I followed certain disabled people on Instagram and watched disabled YouTubers. 

I felt comfortable with the idea of disability and seeing myself as disabled and having disabilities. 

I now call my illnesses 'disabilities' as that's how I see them as that is how they affect me in life. I also find that referring to myself as disabled or letting others know that I'm disabled helps as it prepares them and it means that accommodations for my needs can be made.

I now feel happy and confident to call myself disabled.

July’s Monthly Make - DIY Craft Kit with video

For this months make I’ve gone for something a little bit different and I’m showing you how I put together my DIY craft kits. 

I find my craft kit boxes super handy to keep everything together so that when I want to do some card making I've got everything I need all in one box. I have several different boxes often based on different card making collections or occasions or themes.

In the video below I'll show you what I keep in a unicorn themed craft box and how you can make your own DIY craft and card making box.

Some of the things I put in my boxes include:

• Patterned and plain (including special effect) paper and card
• Die cuts
• Stickers
• Sentiment stickers/die cuts
• Stamps
• Ribbon
• Adhesive gems and pearls
• Glitter glue
• Blank cards and envelopes
• 3D double sides sticky foam squares/3D foam tape
• Double sided sticky tape
• Velum
• Acetate
• Thinks to make shaker cards
• Embossing folders

Though of course you can add whatever you wish