Friday 23 December 2022

I'll be back after the holidays

Sorry for the lack of posts recently. I'll be back in the new year and hopefully back to weekly blogs.

I wish you a happy holidays however you celebrate and whatever you get up to. If you have a chronic illness/disability I hope you have an enjoyable time and your symptoms are manageable and your body behaves and you're able to pace yourself to enjoy holiday events as I know this time of year can be extra hard when you have a chronic illness/disability.

Best wishes, Naomi

Tuesday 29 November 2022

Christmas gift ideas

I thought I'd put together a list of some gift ideas that are low cost; some of which are DIY/handmade gifts and I'll sort them into different categories.


  • Fluffy socks, foot masks and foot cream - this is a DIY gift that I've put together
  • Face masks and a novelty headband - another DIY gift I've
  • Shower gel and a shower scrunchie
  • DIY nail polish set - base coat, top coat, coloured and effect polishes e.g. glitter
  • Hair scrunchies - you could sew your own if you're able to (by hand or on a machine)


  • Writing sets - (I've actually made my own as a gift before)
  • Pens and pencil case - you could block print or sew a pencil case if you are able to
  • Weekly planner pad for the year with pens


  • Hot chocolate stir sticks set - you can even get dairy free ones
  • Make your own selection sets with the person's favourite sweets or treats that are free from if they have allergies

Becca's Boutique © 

  • Mitts and a hat/headband - especially if it's hand knitted or crocheted
  • Fun printed socks - Accessorize often do fun socks often with an offer
  • Fluffy socks

Other items

Tuesday 22 November 2022

My Christmas card fundraiser for Action for M.E.

Instagram post screen shot. Photograph of a caucasian young woman holding handmade Christmas cards. in the bottom corner is the hashtag fundraising Friday.
My Christmas card fundraiser has gone so so well! I'm so proud out myself for what I've achieve through this little project that I set out on not really expecting much. Its been wonderful to receive orders not just from friends but form strangers too!

In total I've raised £76! This will help Action for M.E. with projects like their Christmas Angels project, and their 'Listen to M.E,' support line as well as their other advocacy and campaign work helping to give people with M.E. a voice. It's a really special charity to me.

Last Friday I get featured in the charity's social media Fundraising Friday - see the post here.

I'm now no longer taking orders and I'm just working on this final order that I got asked to make 20 cards for. I've had some big orders - this is my second 20 card order and I've had one or two (brain fog is getting the better of me) orders for 10 cards then smaller orders such as 4 cards.

This is one quote I gave to Action for M.E. to to fundraising team:

“I feel incredibly proud of myself as it has been a challenge. It might not be running a marathon but for me this has been my marathon especially with my M.E. to deal with and it has been tough."

This is so true. With my M.E. this has been a fundraising challenge to get through orders as I'm limited with my energy and the time I can spend crafting. Usually I can only make one card a day, two at a push depending on what I'm making. Sometimes cards take even longer to complete especailly with me being a bit of a perfectionist, but I want people to love the cards that they've bought from me.

I hope this fundraiser shows people with M.E. that they can still fundraise but in smaller ways and I already have palsy to do something similar so watch this space! 

Tuesday 15 November 2022


My M.E has been getting worse lately. I'm doing what I can when I'm able to and adjusting my daily plan with extra rest and low-level activity periods to save what little energy I have. 

I wanted this post to be about imagination as I've found that with having severe M.E for me personally I have to use my imagination a lot and I think it helps that I've always been quite an imaginative and creative person. 

I use my imagination when I'm resting and listening to my favourite soundscapes like the one of Central Park and my imagination weaves a narrative as I listen to the soundscape. Then there's the meditations I listen to; I quite like visualisation meditations the first favourite takes me through the colour spectrum my other favourite visualisation is for pain relief. It tells you of a magical cave with a pool of healing water within; I've listened to this meditation so often that in my imagination I've completely visualised and decked out this cave with differently coloured crystals growing in the cave walls, tiny dancing lights, the reflection of the water onto the cave ceiling, a sand floor, the pool outlined with rocks and more. This is where my imagination takes me.

When my body is too exhausted and I cannot do much else I lay and listen to audiobooks and I've been doing this more often recently getting through some rather enjoyable books.

Then when I can't do anything I just lay with my imagination. I didn't know what to term this but I've bravely started listening to Jessica Taylor-Bearman's book 'A Girl Behind Dark Glasses'. I say bravely because I've had the audiobook, the book and the ebook for a long time but I've never felt emotionally ready to listen or read Jess' book as it was too close to home. When I first started to listen I got about 5 minutes in and had to stop as I was crying so much as every word Jess was saying about how she was physically feeling I was agreeing with and I was also not feeling my best self either M.E wise. But in Jess' book she refers to something called 'limbo land' for Jess this is where her M.E is so bad that she has little consciousness but I can relate to 'limbo land' where my mind and body are just overwhelmed with M.E that it can't fully function. Physically everything hurts and moving is too much and cognitively your brain and mind are overwhelmed so all you can really do is just lay with the thoughts in your head and imagine. Often I take Grand Designs or Pinterest into my imagination. I build houses and plan all the rooms and design them. Other times I plan blog posts or ideas for YouTube videos or places I'd like to visit like cafés, shops, museums or art galleries etc.

My imagination is really important to me as it provides me with a welcome distraction from my M.E and my symptoms especially pain. My imagination also takes me to places where my body and mind can't go. 

There is a quote that I really like and it is "Imagination is another name for absolute power." And that is completely true.

Tuesday 8 November 2022

Tips for making activities easier

Doing any sort of activity can be difficult when you have M.E and everyone's M.E is different but here is some of my advice on how to make activities a little easier so hopefully they become more enjoyable.

Firstly listen to your body

What is your body telling you? Are you having a good or bad day, are your physically tired, cognitively tired, emotionally tired etc? All these things are important to listen to as if your physically tired and then go and do a physical activity you're just going to make yourself feel even worse.

Switch tasks

One of the things I find helpful is to switch tasks so if my last activity was more physically demanding (like getting washed and dressed) I'd switch my next task for something that is say more cognitive (like listening to an audiobook).

This just gives different aspects of my body times to be active and times to slow down.

Take rests

The amount of rest you need totally depends on you. I'd say generally rest before you flop. For some you may need just the one rest period a day but for others you may need a few rest periods to help you keep going. See my blog post of rest.

Low-level activities

Low-level activities are great for when you still want to do something but you mind and/or body aren't quite feeling up to doing something 'big'.

Low-level activities may differ from me to you but some suggestions include listening to the radio, a podcast or an audiobook, reading (a book, magazine or newspaper - I'd highly recommend The Happy Newspaper as a personal suggestion), colouring, journalling/bullet journalling, watching short YouTube videos, painting nails and doing nail art, mobile phone games or small handheld gaming devices (not ones that connect to the television) - that's as many as I can think of and I hope I've listed enough variety for everyone.

Obviously all these activities are at differ levels but most can be done laid down or if not sat up with you legs raised which is a nice restful posture which can help alleviate some M.E symptoms that you may experience like orthostatic intolerance. As a result low-level activities give you mind and body an all round break and I strongly suggest putting if possible into your day one hour or two 30 minute slots of low level activity.

The traffic light system
Post-it not with heading plan for the day. Below it is split into three colour coded sections green, orange and red

This is a system that I find really helpful when I'm writing out my activities and to-do list for the day. I'm quite a visual person so seeing the traffic light colours helps me to plan my day and to-do list in a balanced way for my body.

The traffic light system goes like this: Green = easy, Orange = okay, Red = challenging

Using this traffic light system it can help you plan out your day and can help you more with spreading your activities out. You can read more about pacing and activity management in this blog post which goes into more detail about the traffic light system and how to best use it.

These handy post-it notes are available from the Stickman Communications ® store.

Time yourself

It is incredibly easy to get lost in an activity and then find that you've overdone it and you're paying for it afterwards. One thing I learnt with my OT is how long I can spend on an activity before I reach my limit. This activity time limit will be different for everyone and may also differ depending on the activity. Working out your time limit is trial-an-error. The best way I worked out my activity limit was to start small and build myself up. (This was a little different for me as this time as then I was in a specialist unit for people with severe M.E). 

Generally how you work out your activity time limit is start small 5 or 10 minutes or around there (wherever your M.E is at) and what I found helpful was setting a timer (which I still do) so initially do your activity for that shorter period of time and then after a few days or when you feel comfortable and can manage that time limit. Then you increase it a little e.g. from 10 to 15 minutes and continue to do so until you find a time limit that is manageable for you and you feel comfortable with and what feels comfortable and doable. So a time limit that doesn't exhaust you, or flare up any of your symptoms etc. 

Sometimes on your bad days your activity time limit may be less and on you good days it may be a little more but try to stick within your limit so as to avoid that 'I've overdone it' feeling and exacerbating your M.E.

Break tasks up

Breaking tasking up can make them easier and less tiring. As an example when I'm blogging I don't just write a post all in one go (that would be way too much for me!) so I just write a paragraph at a time. - Behind the scenes of my blog is organised chaos of draft blogs as I get ideas and start a draft blog to complete at a later date as well as to balance my blog out so I'm not just always blogging about health related content.

Obviously not all tasks can be broken up, like cooking a meal, but where possible try to break tasks down into more manageable bits. This fits in with your activity time limit (see above).

Braces and splints

If you have hypermobility it may help to wear braces of splints. For example when I crochet I wear my hand brace as well as some splints on my fingers to give my wrist and fingers some support and stability. This means that my joints don't tire so easily so I can crochet for longer and it also reduces injury and pain.

Adapting your work space

Changing your work space can make both activities easier as well as aiding you. For example if your doing an activity in bed using extra pillows or support pillow like a V or body pillow to support you so you are more comfortable as well as supported. It may also be beneficial to invest in a fold-up bed table (link as an example) or a table that goes over your bed (you may be able to get one of these from your Occupational Therapist) so that when you are doing activities in bed you have a better set up for doing activities.

If you are working at a table adaptations that may make things easier for you include a tilt stand for your laptop, a wrist rest either for typing and/or for your mouse mat, adapted mice (such as an ergonomic mouse), adaptive software such as voice recognition software, back supports and foot rests. (Links all for examples.)

Adapting your work space makes tasks easier for lots of reasons; it may help to reduce pain, improve and support your posture and position as well as supporting your muscles and joints. This is all really important as some of these things are preventative so they help reduce and may prevent problems from happening such as muscle and joint pain.

Tuesday 1 November 2022

6 recent books I'd recommend

'Men Who Hate Women' by Laura Bates

Laura Bates has to be one of my favourite writers. I love how she writes on women issues yet still includes men in a positive way into the conversation.

This book really opened my eyes up to the vast community of men out there who take hating women to the next level. I learnt more about men who troll women online, 'incels' - communities of men who meet in online forums, the pick-up artist community, the 'manospere', extremism and terrorism and more.

It's another great book by Laura and I would highly recommend it if you want something different to the usual feminism books.

Holiday SOS by Ben Macfarlane

This was a really good book with moments where you had to double take remembering that what you're listening/reading actually did happen.

I'd never given much thought to the medical career field of repatriating unwell Brits to the UK. I quite like my medical doctor's stories books and I'd happy re-listen to this book. It was full of really interesting medical cases with the twist of getting the unwell and/or injured person on a flight back to the UK and it wouldn't be a good book if there no hiccups along the way.

This book really made me think of what a fab side of medicine career wise this job would be.

'Weird things people say in bookstores' by Jen Campbell

This was a book I actually read, I actually found out about this book from a review from Hannah below. 

It was a good easy to read book with some great illustrations to support the hilarity of what I was reading at times wondering how a person can actually ask such a thing in a bookstore or indeed anywhere. 

It was sectioned into a few different UK bookstores and then the last section opened out to things said in various bookstores worldwide.

If you want something easy, different and extremely funny to read this is your book!

'163 Days' by Hannah Hodgson 

Hannah is one of my favourite writers and YouTubers. I love her channel and have found many good books from her book reviews as well as her openness and honesty about living with life limiting illnesses.

I've read a few of Hannah's poetry pamphlets (Hannah introduced me to poetry) but this is her first book.

In 163 Days it's spilt into three sections.

The first section is the main book itself and I love the really different format in which Hannah wrote. 163 days is centred around Hannah's longest hospital stay which lasted 163 days and there is an entry for each day. The format for each day's entry took a medical entry for that day and Hannah's entry for the day. This made reading the book quite nice and easy.

Hannah also included a collection of poems which I want to return to an re-read to better grasp what she is writing and communicating as I've enjoyed much of Hannah's other poems and it was Hannah that got me back into poetry.

When Breath Becomes Air by Paul Kalanithi *

*Spoiler alert

I really enjoyed this book. It's about a neurosurgeon who's at the top of his game who he's diagnosed with lung cancer. He writes about his career, his treatment and family life.

It's beautifully written and it would have been nice for there to have been an equally beautiful written ending to his book. Instead it just stops but then that's the nature of terminal illness, you never know when the full stop will come. However his wife did write a beautiful ending to the book for him.

Fangirl by Rainbow Rowell

This was quite a different book for me as I don't usually listen/read novels.

The storyline wasn't what I fully expected from the book description despite this however I still got into the story and I really enjoyed the book.

The book follow two twins who are both into fan-fiction of a particular fiction book series. When they start at college they drift apart and the book particularly follows the life of Cath and her first year of college with the typical family and friend dramas as well as her classmates and classes and of course her fanfic.

Tuesday 25 October 2022


So to start off with rest is a major component of my day. Within my daily plan I alternate between rest and some sort of activity period or the odd time for a meal/snack, or 5 minutes of physio or my AM routine etc.

I was prompted to write this post because today I didn't rest enough and that has Big consequences. Not getting enough rest means that my symptoms get markedly worse. Also on the M.E side of things you needs energy to sleep and though a huge part of having M.E involves chronic fatigue you might be surprised to know that another aspect of the condition is sleep difficulties. This is because your body needs energy to sleep and when you don't have enough energy your body can struggle to sleep. Normally I settle down to bed at 9pm but it's now 11.56pm and today I don't rest enough so I can't sleep which will mean that I'll struggle tomorrow so all can try and do tomorrow is take it easy, do more low-level activities and of course get plenty of rest.

Rest is different for different people. For me it's structural. How we rest is is also different which is something that I came across when I did my day in my life Instagram story. When I first started to have rest periods I'd say listen to a podcast but I soon realised that for me that was still too stimulating for me. Equally I can't engage in pure neurological rest and just lay there for 30 minutes or an hour. For me what I find works for me is listening to meditations especially visualisation, breathing exercises or mindfulness. Sometimes I can do body scanning meditations but it depends as some when I'm doing them magnify my pain and other physical symptoms and I find them too uncomfortable. As well as meditations I also enjoy listening to soundscapes but not the repetitive kind - I like ones in which I can tell myself a narrative.

From when I did my Instagram story I know some people commented that resting in this way would make them nod off (there's a difference between napping and resting) and they preferred what I would class as more active rest or low-level activity. Activities such as colouring, reading, listening to a podcast the radio or an audiobook, flicking through a magazine, completing puzzles in a puzzle book, diamond painting, doing a jigsaw puzzle as a few examples.

However you rest if you're unwell wether it be temporarily or more chronic I suggest building time into your day to rest, preferably a time when you start to tire and your body is saying to you 'STOP I need time out!' - this may be before the time your body is screaming for a nap because it's so overtired. For some people this may just be once a day and for others having a rest may be several times a day, there's no such thing as too much rest. 

Tuesday 18 October 2022

The two faces of M.E

So you may have noticed that I've been more absent on my blog since April when I had my surgery. I knew my surgery would crash my M.E but I didn't think it would be this back and last for so long. I'm still waiting to return to my pre-surgery self; the alternative is to accept that this is my 'new normal' and adapt.

Thankfully what I learnt from my hospital admission in Leeds a few years ago in a specialist unit for people with severe M.E I learnt new ways to live alongside severe M.E. This has helped me to adapt over the past few months such as I've added in an additional rest period early afternoon to help me keep going and I do more low-level activity periods (meaning I'm getting through a lot of audiobooks!) and I try though not always successfully to manage my activity levels. However this is hard as I have my PA's and for me getting a bath is a high energy activity* and it completely exhausts me but having a bath isn't something I can skip unlike other activities.

*Showers are not something that is possible for me as with my severe hypersensitivity having a shower is like being jet washed and causes so much pain and I get cold causing my muscles to spasm.

With my M.E I get my good and bad days just like most people with a chronic illness do but I do find that generally everyday flits between ups and downs. First thing in the morning I'm no so great then by the time my PA comes at 10am I've rested enough to get through our routine and then I'll dip a little before sliding back up and then I start to dwindle and then I'll just completely crash at bedtime.

On my good days I am able to enjoy things. I have a new PA who can't drive so on a Sunday with my social support hours I've started to enjoy being able to do things like go out in my wheelchair to post my letters or do some baking. I also love my PA Diane curling my hair for me. With my family I enjoy playing a game called Carcassonne. Other things I can do is colouring or other crafts like card making - I'm currently making Christmas cards to fundraise for Action for M.E there's also my letter writing. However even on my good days my activity allowance is limited and I have to be really careful not to overdo it and I have to balance my activity time with other things like appointments.

Then on the flip-side are my not so good M.E days. The days when my body is feeling pretty much every symptom of M.E and often my immune system flares up too (for me my M.E is more of a neuro-immune disorder). These days I'm more thankful for my profiling bed to help me sit up when I can't and for the care from my PA's and family; I'm grateful for my pain relief medication and heated blanket and for audiobooks to occupy me and to pass the time. On those days I just hope that tomorrow will be better.

Thursday 13 October 2022

Fundraising for Action for M.E this Christmas

This year I'm raising money for Action for M.E by selling handmade Christmas cards. I wanted to support an M.E charity having M.E myself and I chose Action for M.E to help them continue to run some of their projects such as the Christmas Angels project and their listening service 'Listen to M.E' as well as the charity's advocacy and campaign work that they do to give people with M.E a voice through raising awareness of M.E and trying to get better access to and more funding for services, treatment and research. You can find out more fully the work of Action for M.E and information about M.E on their website.

So far I've managed to raise £10 and I have one current order in the making so more funds will be on their way. I've made a little chart in my bullet journal to document the amount I raising. I know it won't be much but I know that every pound will help.

This is actually quite a challenging fundraising task for me. I love being creative but having severe M.E card making can be quite exhausting (just like everything else is!) I can only spend about 10-20 minutes of activity a day so generally I can only get one card made a day without overdoing it.

I've had some lovely comments from people with comments such as saying how I'm using my creativity in a wonderful way to support a charity.

I just wanted a little project to work on and I love card making and I thought making cards and selling them to fundraise would be a nice idea. I wasn't sure when to start selling cards but when I asked people on social media some people suggested starting early before people started to buy cards in shops. In all honesty I'm glad I've started early as it's giving me the time to make cards and also get the word out there too.

If you would like to purchase any handmade cards please message me via my Instagram profile here.

Monday 3 October 2022

Action For M.E - Christmas Angels

The charity Action for M.E's Christmas Angel's project is now in it's 12 year! The project's aim is to send out Christmas cards to people with M.E/CFS through the Action for M.E office.

I first heard of the project when I was going through an inpatient stay on a specailist unit for people with severe M.E. Christmas has always been a hard time for me since becoming unwell as so much of the Christmas festivities I'm no longer able to cope with or participate in. This makes me feel even more isolated and heightens my depression at this time of year.

However receiving a few cards through the Christmas Angels project feels really special. The cards remind me that I'm not alone and that I'm being thought of at what is a difficult time of year. This is especially because a totally random stranger; often one who has M.E too has taken then time to participate in the project and write in a card and send it to Action for M.E to distribute out.

If you would like to volunteer and participate in the project, and/or if you have M.E yourself and would like to receive a Christmas Angel or you know of someone with M.E and would like to nominate them to receive a Christmas Angel fill in this form. If you have any queries you can contact Action for M.E on 0117 927 9551.

Once you have completed the form Action for M.E will be in touch to let you know what to do next.

All it takes to participate is price of a card and a stamp.

The deadline to participate is Monday 17th October.

Thursday 25 August 2022

How to start pen palling

Following on from my last post I thought I'd do a post on how you can get started with pen palling if it is something you are interested in doing and I can guarantee that you will get much joy from it.

Firstly consider a few things:

  • Do you want to just start writing within your own country or are you happy to write internationally
  • How many pen pals do you fee you can realistically take on to start off with - as you find you enjoy pen palling you can always find new people to write to
  • Who do you want write to? - Age, gender, what the person's interest's are etc. It's important to have pen pals that you feel you have things in common with especially to start with I feel, but then I have a pen pal who isn't like me at all and we've been writing to each other for a long time now! 
  • How much to spend on writing supplies, to be honest you don't need that much and it's better to start with the basics which I'll list below and then as you find you get in pen palling you can grow and buy more bits and bobs.

Where to find pen pals?!

There are different ways and places that you can go to find pen pals. 

The first place is social media. I'm a user of Instagram and you can find people's pen pal/creative accounts like mine @naomi_creates__. You can search for hashtags like #PenPalsWanted and my advice is to check out people's accounts and their posts sharing photo's of their pen pal mail.

On Facebook there are pen pal groups you can join to find pen pals.

If you don't want to commit too much too soon and you have a chronic illness/disability you can join the Chronic Warrior Collective and register to join their monthly card swap and  when you join on your profile you can put that you're hoping to find pen pals through the monthly card swap. That's how I've found some of my pen pals.

Basic supplies to get started

➜ Writing sets which contain writing paper or note cards and then some envelopes alternatively you can buy writing paper and envelopes separately. I like the Paperchase spectroscope collection fore their postcards, writing paper and envelopes. Paperchase also do some nice writing sets and note card sets as well as postcards. On Amazon you can also find a range of writing and note card sets.

➜ Pens, I like to have a range of colours so gel pens work well and it can be fun to use glitter or scented pens. I really love Gelly Roll pens but I found these cheap fun pens to get you started here.

These are your main essentials as you can decorate a plain piece of writing paper with doodles using coloured pens as well as hand lettering. Writing sets come pre-designed. 

➜ You may also want to get a few sheets of stickers - Craft Planet do a great range of stickers. I find HobbyCraft good for washi tape as well as Etsy and Amazon. Though to be honest stickers and washi tape aren't core essentials.

Your main essentials is the enjoyment that you put into putting a letter together and the words you write. I get some mail from one pen pal and sometimes he writes on the most basic of supplies undecorated but it's what he writes to me that counts. Or I have another pen pal that writes to me and she just uses plain paper to write on but draws little basic doodles that she colours in. This just shows that all you need are some pens, paper and and envelope.

When you find a new pen pal decide who is going to write first. If you're writing first...

What to say in you first letter if you're writing first

Initially I like to say something like how exciting it is to have a new pen pal and how I look forward to getting to know them.

I then say my usual hello and how are you and I hope you are well.

In my first letter to a new pen pal I usually write just some things about myself (usually I've already said a little so my new pen pal can know me a little to decide if we feel a match to write to each other). But in my first letter I'll go into more detail about myself to introduce myself more fully to my pen pal. Somethings may include:

  • My age and which country I live in
  • My hobbies and interests
  • Fun facts about myself
  • Things I enjoy doing
  • My favourite things
  • What I do in my free time

Also I may add about what I've been up to recently and any upcoming plans and I'll ask my new pen pal things about them and how they are and what they've been up to and what plan they also have coming up.

Finally I'll add that I look forward to hearing from them and that I look forward to getting to know them and being their pen pal.


Here are some YouTube videos that may give you some inspiration:

Friday 12 August 2022

Why letter writing is so important to me

Letter writing is a huge part of my life but it extends far beyond it just being a hobby. For me receiving a letter in the mail is my bit of connection to the outside world. I have severe M.E which means that I am housebound so I'm not able to go out and socialise like most people.

For me 'snail mail' is my socialising. I read about people's lives and hear what they've been up to they're likes and dislikes and everything in between and though my life isn't that exciting I get to share my life too. The audiobooks and podcasts I've been listening to, playlists of my favourite songs and lists of my favourite YouTubers and blogs, my current craft projects and other things I've been up to like doing my nails or blogging or doing something for my YouTube channel. Sometimes I do talk about my health but that's only one portion of me and I like to share all ten portions of me.

Sometimes I'll write a letter on letter writing paper; other times I'll write inside a handmade card other times I'll get creative especially when I've been inspired by a pen pal's mail or a YouTube video I've watched. I love making every letter/card I send out to my friends and pen pals utterly unique.

As well as writing to pen pals I like to write to friends, it's just nice and something different to a text or message on Instagram particularly when that friend is having a tough time or I just want to surprise them with some lovely mail especially if that friend has been really supportive.

Writing letters isn't easy for me with me M.E. I'm forever apologising for me delayed replies but thankfully everyone I write to is so understanding. It also takes me a while to complete replies and I have to write here and there when I'm able to so sometimes I end up rambling as I lose track of how much in total I've written!

Sometime when I'm not doing so well all I can manage are postcards or a single page reply but again everyone is lovely and understanding.

I have had pen pals in the past who haven't been understanding but I now have a lovely group of pen pals who I write to regularly or as often as we can and friends who we'll send mail to each other occasionally. Some of my pen pals and friends who I write to have chronic illnesses/disabilities too including M.E.

It's nice to have pen pals with M.E as the 'get it' in terms of understanding and living with the condition and how it may affect us and we can write about the highs and lows of living with M.E.

Though I'm not bed bound with my M.E I do spend the fast majority of my day on my bed as this is where I find I am most comfortable with my profiling bed and air flow mattress and I have an over bed table where I can put my laptop or colouring things or letter writing things.

Next to my bed I have a giant cork notice board - like the size you'd find in a class room! There I put up all my mail and other bits and bobs like bracelets I've kindly been given through people who've set up their own thing to make and send out bracelets to people dealing with chronic illness. I also have my knitted angels up there too from the Action for M.E's Christmas Angel's project.

Especially on my bad days I love looking up at my notice board; at all the novelty push pins I've collected and seeing all the mail up there reminds me that no matter how isolated and alone my M.E makes me feel that I am loved by so many people. I also feel a lot of gratitude for the time people have taken to write to me, or to make me that card or paint me that quote or to colour me that image and so on.

So as you can tell by now (hopefully) from this post that letter writing means a lot to mean and it's more than a fun crafty hobby. It's almost a social lifeline to the outside world and how I hear about the outside world too. It's a challenging hobby having the energy to reply to pen pals and make cards including birthday cards but it's worth it. It's also something that I can do in parts on days when I have the energy. Like today I finished writing in a card that I started writing in the other day so it's defiantly manageable and for me I have just enough pen pals that I can keep up with being able to write to and now I've been writing to them all for so long that I now consider them all to be friends as well as pen pals. But yes back when I began writing letters I didn't realise how important for my social wellbeing letter writing would become. 

A view point looking up at a large cork notice board with fairy lights bordering it on the notice board is a colourful collage of mail: cards, postcards and bits of paper with writing on covering the whole space of the notice board
The view from my bed looking up at my notice board

Saturday 6 August 2022

A peek at some of my favourite phone apps

So first you can see that I really love my calendar and notes app..

I have all of my apps just on this on screen and then each apps is categorised into each folder - I just don't like having multiple screen of apps.

My Top 10 Apps

(In no particular order)

1. Lists

I would be totally lost without my calendar as in there I digitalised my daily plan which helps me manage my M.E. It also helps me to remember appointments and other things especially things that are out of routine.

2. Home Kit

I like my HomeKit where I can control the lighting in my room via my phone. For me this is more for accessibility as it's easier to tap some buttons or voice control to alter the lighting my room as opposed to getting out of bed which is not realistically an option for me to do. 

3. Expense

This is helps me with my incoming and outgoing expenses to help stay on track with my budgeting. I can create different 'accounts' so unlike on my bank where all my money is just one lump sum on Expense I have different accounts for different types of expenditures. Expense helps me stay on try of what I'm spending to help me try and save.

4. Dyson

This app means that I can control all the many differs feature of my my Dyson Hot+Cool™ fan on my phone as well create Siri short cut commands so for some things I can voice control certain features. 

5. Calendar

I would be totally lost without my calendar. Back when I was in Leeds in hospital and I was given my 'daily plan' (which I use to help manage my M.E) I digitalised this daily plan onto my calendar with alerts for every new event, plus my all time favourite thing... colour coding. What's more now with my life, my calendar and my daily plan is that it is easily adaptable. If I have an appointment I can move aspects of my daily plan around, especially activity and rest periods so that I'm still able to get enough mainly the latter in my day.

I'm a very visual person so I think that where my love of colour coding come in and being able to look at my calendar and see what is going on where and being able to visualise what is going on really helps me know what is going on especially if there is something going on in my week that isn't a typical occurrence.

6. 1SE - One Second Everyday

This is a one year long project.Each day I capture a one second video clip (sometimes a photo) and it collects together over the year to create a film of one second video clips giving a little glimpse into what was done that day. Like right now I am filming a time-lapse video of me typing blog post for today's video clip. Obviously I'm not perfect and I do forget and I do have to back track and fill in missing days. My life also isn't the most exciting one so I try come up with really creative videos.

7. Hip

This is a great app for keeping track of friends birthdays. I have it set to notify me 2 and 1 week before the birthday date to give me plenty of time to make and get a card posted. It also notifies me on the day so I can drop them a message.

8. iMovie

This is the app I use to make all of my video for my YouTube channel so definitely a favourite and essential app to have.

9. Good Reads

I really like the Good Reads app and being able to track the books I've read/listened to. I also have my yearly challenge where I set a target of getting through a set number of books in a year. I can also connect with friends and see what they've been reading and this gives me ideas for books I want to add to add to my 'Want to Read' shelf. When I've finished a book I can also leave a rating and also review. It's defiantly one of my favourite apps.

10. My Water

Monitoring my water intake is really important for my health so the My Water app makes it really easy to ensure that I'm staying nicely hydrated. You input what drink you've had say a 300ml cup of coffee and it will calculate the water balance of that drink which will go towards your daily target. So for me I aim to drink 2.5 litres a day so the My Water app helps me reach that target much more easily.

Saturday 9 July 2022

Disability services I use and would recommend

Radar key

A key in a lock. The key has a blue easy to hold handle and a key ring attached.
Radar keys help you access disabled toilets and Changing Places that are fitted with a radar key lock. By having a radar key it helps you to access more of these facilities such as for me when I stop off at Peterborough Services my radar key enables me to access their Changing Places facility.

If you don't have a radar key you can get them from places like continence services, the blue badge company, aids and adaptations stores, Age UK, disability rights UK and other places.

Radar keys also come in different designs so the key I have has a large easy to grip key end making it easier for me to hold the key to unlock the door.

Sunflower Lanyard

A green lanyard with sunflowers on with a card attached that is green with sunflowers on and a white rounded corner with text reading hidden disabilities
The Sunflower Lanyard scheme is for people with invisible illnesses/hidden disabilities. Though when I leave the house I'm in my wheelchair I sill have hidden parts of my disabilities whether that be speech or cognitive difficulties, needing a carer with me or having hidden medical devices and other things. So because of this I wear a Sunflower Lanyard to identify to staff that I have hidden disabilities and this helps me with accessing the support I need. Such as one time I was able to bypass a queue into a store when explained that I was unable to queue aided by the highlight of the Sunflower Lanyard I was wearing. I do find that wearing my Sunflower Lanyard does help and staff are more receptive to offering more assistance or aiding my access when I do go out.

I just have a plain Sunflower Lanyard and card but you can get cards for your lanyard that specify different medical conditions or things like autism or that you a carer. You can now get personalised ID cards for your Sunflower Lanyard (which are sort-of similar to the Access cards but a little different).

You can get your Sunflower Lanyard and cards from the Hidden Disabilities website and then head to their shop through the menu.

Continence card

This is a little card that you can carry around with you to explain that you 'can't wait' and need quick access to a toilet. This could be if there is a queue for the toilet, explaining a need to use a disabled toilet (because not every disability is visible) or even in a shop or restaurant to hopefully use the staff toilet if there is no public toilet.

You can get these cards from the IBS Network and also The Bladder and Bowel Community. You can also get these cards for travelling having the same 'can't wait' information in other languages.

Access card

Access cards are a quick and easy way to communicate what your access needs are. On your card you will have different symbols which outline your access needs from having an assistance dog, being d/Deaf, needing essential carers with you or level access. For more information see their guidance on their different symbols.

When you apply for the card you have to explain why you need each access symbol. You will have to complete an application for a card and submit supporting evidence. The card costs £15 and is valid for 3 years.

To find out more check and to apply for an access card got to their website here.

CEA card

The CEA card allows you to go to the cinema and have someone get in for free with you. It is part of providing reasonable adjusts for disabled people meaning they can have someone enter the cinema with you. This means that this additional person is able to then provide if needed any support you may require.

There is a small cost for the card and it is valid for a year. You do have to provide evidence of disability to apply for a card.

To find out more check out the CEA card website here.

Audiobook services

I use several audiobook services, some of which you may be eligible for. 

The first is the RNIB Reading Library. I've been using this for many years way back when they used to send out to me books on a CD to listen to. Then they brought out a way to access their books through an app on your mobile phone instead - however you can still access what they have in their library in other formats.

The next two audiobook services accept a wider range of people to use their audiobook libraries - both are accessed through an app.

The second is Listening Books; like RNIB Listening Books is a charity that enables disabled people to access audiobooks. As well as books newspapers and magazines can also be accessed. 

Listening books does charge a small fee though this may be wavered based on your circumstances.

The last audiobook service I use is Calibre Audio. This is a free audiobook service and is very similar to the ones run by RNIB and Listening Books. Like the others I choose to listen through the app.

Sunday 3 July 2022

Sometimes birthdays aren't a celebration

A plate with some rectangular slices of chocolate cake with decorations on top and some lit candles
A few weeks ago I had my 29th birthday but since becoming chronically ill in 2013 more and more as the years passed by I've found it harder to see my birthdays as something to celebrate.

This year was particularly hard as turning 29 I'm not where I planned to be as well as the thought that I'll be 30 next year! Back in 2012 and even before then I had my life (well my career as that was my sole focus in life) I'd planned that by the age I am now I'd be advancing in my career in mental health nursing with children and young people ready to start my psychotherapy training when I hit 30/my 30's.

Unfortunately that is not my life now and I know that I need to accept and work with my therapist on making a new plan for my life and to focus on the the present moment. I do practice gratitude and I do aim to celebrate the big and small achievements in my life. Simple things most people probably don't think twice about but for me they are truly are big things like recently managing to Shellac my nails when I haven't felt well enough to do so for a while bringing joy into my life as I love having my nails done.

So yes on my birthdays there are things in the past year that I have "celebrated" but I still find a birthdays a hard occasion to celebrate as I feel like my life is stuck. Most of my "celebrations" are over the small things (which are still important) but there are no big milestones moving my life forward in the way that that I'm wanting it to. Birthdays especially are a process of grieving as I see myself getting older and I wonder things like 'will I ever return to education?', 'will I even have gone on a holiday?', 'will I ever have my my own home?', 'will I even be able to work or volunteer?' and such things. Rather than happiness I often feel sadness on my birthday missing what I had planned for my life to be but struggling to plan a new alternative life for myself that's more accommodating for the challenges with my disabilities. I see my age increasing but I don't see my life going anywhere anytime soon and I feel so disheartened.

I do try to make my birthday a nice day. This year I kept to my usual schedule for the day that helps me manage my M.E and other illnesses. But I put on a facemask I'd been saving for a special occasion (so a birthday is a perfect reason to use it) and I put on some makeup (which always makes me feel brighter). For my afternoon activity I opened gifts from friends. For tea I asked if we could eat something I enjoyed so we had salad and fish finger wraps.

So it was a nice day and I did enjoy my birthday but there was a lot of thinking about 'here and now' and grief over the loss of the life I had planned out and I know now that I need to make a new plan both short and long term and I have started on that, it just takes some healing over the life I've lost.

I really hope that by next year I can truly celebrate my 30th birthday! - I've already asked if I could have some 3-0 balloons as a way to celebrate.

Monday 6 June 2022

My body is a medical play thing - A poem by me

My body is a medical play thing
medical students and junior doctors surround me
eager to learn

Prodding, poking and flexing my body
trying out things they'd learnt in university
physical exams on an unusual body

Practicing taking a complex medical history
question after question
fascinated with the answers

They surround my bed
disturbing my quiet
when I'd rather be left to be ill alone

It makes me feel that to them
that they have forgotten that I am a person
but instead one of their cadavers 

I've never really given writing poetry a go. At school I hated poetry as my dyslexic brain could never get words to rhyme. However I've been reading a lot of Hannah Hodgson's work and from her YouTube channel she's gotten me interested in poetry. Hannah has made me realise that poetry is more than rhyming it's about expression of our thoughts, feeling and experiences. Hannah writes a lot about her experience of illness and this poem (well I hope it is) is an expression of how I feel from my own experiences.

Thursday 26 May 2022

10 things I can't live without

1. Coffee

I do like to drink tea and herbal tea too but I do like to start my day with a nice cup of coffee especially if has come from my coffee machine. It's my little treat to start the day before Diane my PA arrives and the day begins.

2. Nail polish

I have more nail polishes than a dare count! I love doing my nails and nail art.

Fun fact: I'm a CND qualified nail artist. I did a training course to learn how to apply Shellac. I would love to Shellac my nails more often but it takes time to set up, do the whole application process then tidy especially as I love if I can to do some sort of nail art.

Having colour on my nails always make me feel brighter.

I love looking on Pinterest for new nail art ideas and inspiration.

3. Hot baths

I do find baths easier and I love to have a good long relaxing soak in a hot bath especially paired with my favourite toiletries like Rituals wash products and Lush bubble bars.

4. Audiobooks

Audiobooks are like my lifeline. I am trying to get back into reading, especially poetry which often isn't put into audio format but I'd be lost without audiobooks. When I was recently in hospital all I did was listen to books as well as that when I'm having a bad day audiobooks are great to ease my boredom.

There's a YouTuber I love called Hannah Hodgson and I've discovered some great books from her reviews and Good Reads account and Hannah is the one that introduced me to poetry and has helped me try out books I wouldn't have considered.

5. My friends and pen pals

I'd say that now I'm in a really good place when it comes to the people in my life; I now have a small but positive and supportive group of people around me. I always look forward to my pen pals letters and cards and a lot of my friends will occasionally write to me too. I much prefer to send messages to people in the mail than via text, plus a card and envelope can be nicely decorative.

6. My giant notice board

When we first moved here I asked if I could get a notice board for my room, only my Dad didn't realised that I was buying a 2m long notice board like the size he has in his classrooms at work. However it's now obvious why I need such a big notice board to display all my mail. It's hung next to my bed and it never fails to make me smile and feel loved when I see what I've put up there and I've collected lots of novelty push pins to jazz it up.

7. My iPhone

I've just got myself a new iPhone 13 (in pink with a sparkly case of course!) and I love it. My old iPhone 7 was starting to get old and I also needed a good camera for filming for my YouTube channel so I thought I'd get the iPhone 13 so it would be a 2-in-1 phone and camera. I'm defiantly not addicted and glued to my phone, my average daily screen time is just a few hours each day but I would feel very lost without having my phone with me.

8. My headphones/ear buds

I'm very hypersensitive to noise because of my M.E but also I like to tune noises out around me like the hum of my air mattress or the sounds of the hoover or other people's music (accompanied with their humming and singing along to the music) and instead tune into whatever I'm listening to whether this be an audiobook, podcast or my own music.

9. Polly

Polly is my doll which I got for my first Christmas and she's still with me though now a little floppy. Polly would most likely be the first thing I would try to rescue if there was a fire. When I was a child wherever it was I was sleeping she would HAVE to come with me but now I can go away and leave her behind.

10. My craft supplies

Where do I start with what crafts I've got! Crochet, card making, decoupage, block printing, painting, macramé, origami, colouring (and probably other crafts too)! Crafting is my thing, it's my hobby and enjoyment and I love making pretty things to send and put in letters to friends and pen pals. I'm also always up for giving new crafts a go and there are some things on my list like I'd love to make some things with resin but I'm trying to use up some of what I already have first but what I have seems never ending!

Tuesday 17 May 2022

I've been missing since 2013

The 12th May marked M.E Awareness Day. I have been missing since 2013; the life I had planned out for me back in 2012 is now just something I dreamt up. I can't think about the past of the future, I must focus on the hear and now; getting from one hour to the next and at the end of the day it's exhausting to know that I will have to repeat all my daily struggles once again.

I started to become unwell in 2013 - that's sort of when my initial symptoms became progressively worse but becoming unwell was something gradual and I just thought it was because I was overworked at Uni and in February was when I had to leave Uni.

Over time my health worsened; I kept going to my GP and was repeatedly told that I had Post-Viral Fatigue Syndrome and my symptoms would ease. But they never did and my symptoms slowly worsened.

Fast forward to the 4th July 2017. I had my first appointment with my FND neurologist and in that appointment my diagnosis of FND was confirmed though some of my symptoms didn't fit with FND and so I was also told that I had M.E. Before the I hadn't heard of M.E and there was no further forwarding referral to an M.E service so I was left to go home, research M.E and find out how to live with it.

I'd say back then my M.E would have been classed as 'moderate' on the M.E Disability Rating Scale but now my M.E has been classed as 'severe' but personally I feel that whether your M.E is mild or severe it is still a difficult illness to manage not just practically but in terms of how poorly understood and under funded and researched the condition is.

Since 2013 I have been missing from education, meeting friends, going to social events, going on holiday, employment, voluntary work, on my bad days even leaving my bed and more. M.E has left me feeling invisible to the world and I only really see the same few faces. 

M.E has left me dealing with a myriad of different symptoms affecting my whole body including immune system - it is much much more than 'simply feeling tired'. 

I feel some days as though M.E has taken over and I'm not me anymore; I am M.E.

I try to be positive as the alternative is to be miserable and I'm not one of those 'woe is me' kinda people. When I first became unwell I did feel like being ill was all I had in my life but when I had some sessions with a health psychologist I started to see the other parts of me. I still have to work within the restrictions of my M.E and make adjustments when it gets worse as it has done lately (hence my lack of blogging as well as just sharing videos on my YouTube channel when my health allows) but it's all about balance as currently there is no cure for M.E.

I'm not quite sure how to end this blog post. I've just been typing here and there as my body allows and ironically I seem to have finished this post on a Tuesday which was the day that I used to post on. 

I think in this post I wanted to briefly share the timeline I've been on and also how invisible M.E makes me feel as well as being part of the millions of people missing due to M.E. I wish I could say that M.E is getting greater understanding and research but sadly that is not the case. Just know that if you also have M.E as invisible and missing as you may feel you are not as alone as you may feel you are.