Thursday 23 May 2024

How M.E. has changed my life

M.E. has changed my life both positively and negatively. Don’t get me wrong M.E. is a difficult illness (to put it simply) in so many ways and it has literally turned the plans I had for my life upside down and thrown them away. However and this might sound corny but over the past 11, nearly 12 years it’s been a rollercoaster of a journey and I’ve learnt a lot along the way both about myself and about living a life with a chronic illness/disability and how that has changed me and my life.

Before M.E. I had my whole career planned out but getting ill with M.E. changed those plans and I’m still trying to figure things out and I’m still unsure what I want to do with my life now career wise because of all the barriers I face because of my disability. One way M.E. has changed my life is in the way that it’s given me a voice to share my story and experiences to raise awareness. I’ve worked with M.E. and disability charities doing a variety of opportunities that I otherwise wouldn’t have done if I hadn’t of gotten ill with M.E. I also wouldn’t have started this blog or my YouTube channel too if I hadn’t of gotten ill either. As well as that I wouldn’t have started my fundraising project selling my handmade cards either.

Another thing M.E. has done is make me realise and work out who my true friends are as well as finding true friends. This has both been difficult and deeply painful but also wonderful making true connections when I realise who are the people that matter the most.

I’ve also come to realise that the chronic illness community isn’t for me. At first when I got ill I was really in with the chronic illness community and at the time in some ways it helped me adjust as my life changed into one with a chronic illness. However personally over time I started to see the community a different way and I found it a negative and competitive space at times. Yes I’ve met friends through the community but photos of a hand holding pills, a bag of saline hanging on an IV pole and posts where people were in competition to be ‘the most ill’ wasn't for me. Personally I prefer to raise awareness in a more positive way and in a way that encompasses my whole life; not just the medical me. However I do know that some people find comfort and their place in the chronic illness community so I respect that.

M.E. has also changed me to become a stronger person by challenging me. To handle the bad days, the pain, countless symptoms, extreme fatigue and everything else it’s thrown at me. M.E. has also taught me my limits. There’s this quote that I love:

“There are things that are possible; things that are impossible, but otherwise, I think that within my restrictions anything is possible.”

Getting ill has taken a lot away from me in lots of different ways and aspects but I try to focus now on what I can do each day and within what I can do there is still a lot and I’m thankful for that. I’ve also learnt gratitude since becoming ill and that’s changed me too. I’m grateful more for the small things, like a letter from a friend, my PA making me pancakes, going out to the postbox, time in my garden on my swing seat or enjoying a good book.

My M.E. has also changed my life in other ways too. I’ve grown in confidence; I’ve had to but it’s not always been easy. It’s been difficult at times to accept the deterioration with my health and thus the need for things like mobility aids and care but I’m now a happy ambulatory wheelchair user (with my jazzed up wheelchair) as well as having pretty crutches (who says mobility aids can’t be pretty?!) and care is just something I’ve just had to accept I need. I’m also more confident now to speak up for myself when needed, such as speaking up for my needs.

The ways M.E. has changed my life negatively is the deterioration in my illness over the years which has been hard. I go through big crashes and find a ‘new normal’ then other times I crash and return but there’s always the worry about crashing and having to get used to a ‘new normal’ in which my M.E. has slightly or significantly worsened each time. Other ways M.E. has changed my life is the increase in isolation because I’m not able to be in education or work and all my friends live in other parts of the UK or overseas, I don’t have any local friends and I’m not in a position to meet new people locally either.

So yes M.E. has changed me a lot; I don’t think I’d be the person I am today if I hadn’t of gotten ill. Both in a physical sense in terms of now living with a disability and my life mapping out differently but also what I’ve learnt over the years. The things I learnt about myself and about life, to be more resilient, grateful and stronger etc. as well as to be my own advocate. To work within my limits and remember that within my limits the possibilities of what I can do are endless. There are days when I hate my M.E. (and I have a lot of them) life is challenging; the world isn’t perfect for disabled people and services for M.E. are few and far between as is the knowledge about the M.E. make having this illness difficult to say the least. But in the other ways M.E. has changed my life I’m thankful for all it’s given me, for all the opportunities I’ve done and I’m yet to do and to be and advocate for others with this illness.

Sunday 12 May 2024

Reflections on M.E. Awareness Day

Today I’ve been thinking about the millions of people missing around the world due to this illness, people like myself missing from education, from work and from society. Missing out on getting the degree and career they dreamed of or missing out from catching up with friends over coffee or a meal or holiday with their family and a million other things.

I think of the lack of funding M.E. receives which means lack of research which leads to the lack of effective treatments not yet found as well as understanding into this illness. There’s still so little that professionals understand about M.E. Even now people with M.E. aren’t getting the care they need because doctors and other professionals don’t understand. They see someone so ill with this illness that the can’t sit up, talk or eat and instead they think that the person is mentally ill instead of being ill with very severe M.E. So many people are facing injustice when it comes to our care.

Statistics from The M.E. Association have found that in nearly a third of patients have the most common waiting time for a diagnosis of M.E. which is between 2 and 5 years - I had to wait 4 years for my diagnosis 

Researchers at the University of Southampton have found that 1 in 3 people with severe/very severe M.E. have no access to local specialist services

Access to care shouldn’t be a postcode lottery. Where I live there’s no access to specialist care at all whatever level of M.E. you have. I also think greater access to social care is needed too. Diagnosis should also come sooner and GP’s should understand better on how to manage our care in the community along with community healthcare services: nurses, Occupational Therapists and physiotherapists as well as social workers to bring holistic care to patients. I also think that more professionals need to be aware of the different guidelines* to help them support people with M.E.

Today I’ve also been thinking about those that have lost their life to M.E.; whether they got too unwell or the illness got too unbearable for them. We need to remember and not forget these people. These people show the reality of M.E. and just how severe this illness can become; that M.E. is much more than ‘just feeling extra tired’.

But we won’t be forgotten. I’m determined to be a voice for people with M.E. and though I might be limited by my own experience with M.E. I will do all I can to help raise awareness, fundraise, blog and do opportunities with charities to let the millions be heard.

More about M.E. including my story, videos and links to other organisations


*Guidelines:

Saturday 11 May 2024

A year in my home

Note: when I first posted this post I thought it was move in date but I’d got muddled up as I often do. I actually moved in on the 11th May not the 10th April!

A year ago today I will have been living on my own a whole year. It still feels surreal sometimes that this is my own home and I’m the only one that lives here. 

I’m also not quite sure how I’ve made it this far, I couldn’t have done it without my care team of PAs, carers and nurses and everyone else such as OTs and not forgetting my family especially my Dad. We all need a Dad, someone to do DIY for us or to sound off to or ask for Dad advice. Also on a supportive way my friends, even though they’ve not been here in person they’ve been there virtually on my phone. One friend in particular has really been a rock for me, just someone to talk to, vent to, share my day with and share funny animal videos with etc. we all just need people like that in our life and though she may not be here in person this friend has really kept me going too.

It hasn’t always been easy; it’s difficult living on my own especially on my bad days or on the odd days when my care hasn’t been there but I think I’ve done well and my Dad thinks so too. When I first moved out Dad thought I’d have a lot of ambulances coming out to me (I hate paramedics and hospitals) but I’ve actually only had two ambulances over the past year, one for a bad concussion which I got from falling during a seizure and another for and asthma attack and only the concussion landed me in the Emergency Department. Dad also thought that CareLink would be calling him a lot too to come and check on me but they have only called him once when I had my asthma attack so to my Dad I’m doing and coping much better than he expected.

Slowly this little bungalow is more becoming my home. When I first got the keys I did decorate it but over the past year I’ve changed more and more things to make this place mine. Dad’s renovating the back garden for me which I’m really excited about. I’ve linked in below a tour video of my home that I put up on my YouTube channel, since then there’s been several changes to my my home that I noticed when I watched back over the video like how my bathroom floor has been changed now so something much nicer, I now have a proper makeup mirror in my bedroom at my makeup desk (which has been reorganised) and I’ve added a yellow HomePod on a stand next to my toaster in the kitchen and also the top of my kallax unit in my bedroom has had a change around and a shelf has been put up above my craft desk and my letter rack has been moved to that shelf and I’ve finally changed the seat cover on my rocking poang chair too!

I still haven’t yet found my routine here. I more just go with the flow and try to listen to my body when it’s telling me it’s getting worn out. I had a strict routine when I lived with my Dad and stepmum but here I don’t really think I can have a strict routine as my evening care is always at different times and I have to wait the nurses to come at no fixed time some days etc. plus when I’m feeling up to it I have house jobs to do like tidying up or putting laundry on. These things do tire me out and it does make living on my own difficult. I try to delegate as many tasks as possible to my PAs and carers to save my limited energy levels and this does help and this is partly why they’re here to help me out and to enable my independence and to enable me to be able to live alone.

Despite the challenges and fatigue and everything else from living alone I love it! - “We can do what we want to again”: Moomintroll (The Conscientious Moomins) I love living by my own rules just simple things like being able to change my pjs as often as I want (as it’s me that has the full laundry basket), and being able to choose my own meals, or just being able to do my own thing and do what I want when I want (within reason and when my body permits me to do so as well) and having my own space too. I’m a person that likes solitude and quiet and my own space and being on my own so as much as I love my PAs and carers I do like my time alone (apart from when I’m not well and therefore I’m struggling without the additional support so then I am relieved to see my PAs/carers).

The layout of my little bungalow has also worked out perfectly for my needs. I’m only a few meters from anywhere and it actually works having the kitchen integrated in the front room as it’s less rooms and less walking for me. My housing association have also been great putting in adaptations like grab rails and a fire door and I’ve also got some extra things from my Occupational Therapist. All this means that I can live more independently (especially when I’m on my own) and tasks are made a bit easier for me or things/places are more accessible for me. I didn’t really have much of that at my Dad’s, I didn’t have the grab rails and the stairs were really difficult for me so it’s great to now be on one level in a bungalow. You can’t have everything though, I don’t think there’s a thing as the perfect property; there’s always that one thing and for me the one downside to living here is the parking.

It feels good to now have my assured tenancy; it feels more permanent and solid and like I have a future here and I do see a future for me here and it feels amazing.

Tour my new home

Friday 3 May 2024

I wrote an article for The Metro!

I’ve just completed my first opportunity as a Storyteller for the disability charity Scope. The opportunity was to write an article for The Metro. At the moment it’s just online but it may go into print in their newspaper but that’s not for definite just yet.

I was asked to write about my extra living costs due to my disability, especially higher utility bills because of medical equipment that needs powering 24/7 and higher grocery bills because I have multiple allergies on top of my every day expenses and how this affects me financially. I also got asked about to write about how the proposed changed to Personal Independence Payments (PIP) would affect me if they were to happen in light of recent announcement.

Read the article on The Metro here.

Saturday 27 April 2024

Activities you can do in bed

This post follows on from my Living with M.E. post where I touched on a number of different topics that I’ve found helpful over the years on things I’ve found to be helpful whilst living with M.E., especially severe M.E. and though I’m not bed bound but I do have to spend much of my day here in bed to best manage my symptoms so I thought I’d put together a post that I know a few people have wanted me to write on activities that can be done in bed.

Whilst I myself have M.E. I’ve written this post to apply to anyone with any illness who requires to spend time in bed and whether your bed bound or you just have to spend a couple of hours in bed each day I hope this post is of help to you in helping you find activities that you can do during the time that you are in bed.

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Some equipment I find helpful:

Some things I’ve found useful to allow me to do activities in bed is my over bed table*. A large portion of this table can tilt which is great for activities and helps with my posture too. My first over bed table* was provided to me by my Occupational Therapist (OT) so it might be helpful to speak with your OT to see if an over bed table can be provided to you.

Alternatively you can get fold out bed tables that can tilt up and you can adjust the height of. I have a bamboo one that I used before I got an over bed table. Another alternative that I still use in place of my table is my beanbag lap tray. These are two great alternatives and are a much cheaper option to an over bed table.

I also have a clip on rechargeable lamp as often I’m not always able to tolerate much light in my room so my lamp allows me to do activities at my table.

Finally is my Flexzi 3* stand that I’ve clipped onto the bed rail of my bed that I can mounts my iPad onto - this has been one of the best gadgets that I’ve ever bought. My Flexi I can also mount my phone onto if I wish and it comes with a part whereby I can clip my Flexzi stand onto a table as well.

An alternative which I also use and used before I got my Flexzi is a tablet beanbag, I have one of these and find them quite helpful.

I also find my noise cancelling headphones or my AirPods (or something similar) good especially to block out background noise as I find this reduces my fatigue as I’m not having to process so much sensory information.

I’ve left links to what I have but I’m sure you can find similar items that might be better for you or your budget. *Items eligible for VAT relief.

 

Note:

These activities will range in level of how energy consuming they are from very/low-level activities to higher level activities. I would colour code them from green, orange to red but I know everyone is different and have different ability levels and what might be a green low-level activity for one person might be an orange activity for someone else or they might be green for you on a good day but orange on a not so good day so I won’t do this and I’ll just list the activities.

Also with pacing more energy consuming activities you might want to limit and do for shorter periods especially if you have an energy limiting illness. This can help manage your symptoms and reduce pain, fatigue, post exertion malaise and other symptoms.

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I’ve put links to products and stores to help you out - if you live outside the UK I’m sure you have similar stores that will sell similar products. - All the products and stores (except supermarkets) I’ve left links to in this post sell online as I know that many of you will probably find it easier to shop online.

Craft activities

Activity books

There’s a wide variety of activity books out there so you’re bound to find something out there that will interest you. 

Here’s a YouTube video I did all about activity books if you’d find it easier to watch.

Some of the activity books out there include:

  • Puzzle books: word search, sudoku, kriss kross, crossword etc.
  • Sticker-by-numbers
  • Journal type activity books
  • Art activity books
  • Colouring activity books
  • Sketch art
You can by activity books from a wide number of places including: bookstores (such as WHSmith, Waterstones, bookshop.org and other bookstores including independent bookstores), Amazon, supermarkets, The RangeThe Works

Card making kits

Card making kits are a great activity to do in bed as you get nearly everything you need to make your cards in the kit and then you can add whatever isn’t included like glue and scissors to do the activity. You can also pace yourself such as by only making one or two cards at a time. 

There are a lot of kits out there, check out the brands Violet Studio and Gorguss. Also check out the stores HobbyCraft, The Range and The Works.


Assembling die cuts

One activity that I do really enjoy doing in bed is assembling die cuts to make cards. What I do is on the Sunday I have my social hours with my PA Jo we sit and cut out die cuts on my die cutting machine so then I have die cut sets organised into envelopes ready to use for an in bed activity.

If you are able to spend time out of bed to prepare die cuts for this activity I’d recommend an electric die cutting machine as they’re much easier to use than manual ones. I have the Gemini Junior machine. It cuts up to an A5 piece of card so it’s not too big and it’s a just about lift-able weight.

If you aren’t able to get out of bed and you have a good size over bed table (like the one I have) and you either have a nearby socket or plug extension it would be possible to die cut in bed if you keep yourself tidy and organised with the die cuts you’re using, the paper you’re cutting and the scraps you’ve used, tools and other equipment etc. If you can find a way that works for you it’s an activity that I’d highly recommend.

I’d also recommend Sizzix thinlits die cuts and their card stock packs as well as this and this Violet Studio paper pads for die cutting.


Craft kits

There is a wide variety of craft kits out there and like with card making kits you more-or-less get everything you need and I’m sure you’ll find a kit to try out. There’s needle punch, mosaic coasters, macramé, cross stitch, embroidery, decoupage, diamond art, iris folding and so much more - all activities you can do in bed. Personally I love iris folding and diamond art kits to do in bed.

Places I’ve found kits are HobbyCraft, The Range, The Works, Amazon, Baker Ross, Etsy, Not On The Highstreet, The Craft Kit Company and Pretty in Paper by B (for iris folding kits).


Colouring

This is another great activity that you can easily do from your bed. There are lots of difficulty level colouring books out there. I really enjoy Joanna Basford’s publications. 

Not only are there colouring books out there you can get colour in stickers, postcards and notecards (which you can send to friends and pen pals) as well as other colour in activities such as colouring journals.


Scrapbooking

This isn’t something I do myself but it was an activity a friend suggested. You can keep a scrapbook on almost anything, in memory of a pet or loved one, received mail, special memories, a year in your life. You can make it as plain or as decorative as you wish. You can also buy scrapbook kits to get you started and then the rest is up to your imagination. Pinterest might be good places to go for scrapbook page layout ideas. - For more see ‘journalling’ below.


Crochet and knitting

This is another activity that can easily be done in bed. If you don’t know how to crochet or knit you can learn from YouTube or books - that’s how I learnt to crochet, or you could spend time with a family member or friend who can crochet or knit and get them to teach you.

You could buy a crochet or knitting kit that has everything you need and these kits vary depending on you ability from beginner to advanced or you could buy your own yarn and supplies and follow patterns. You can get patterns from pattern books: beginner patterns for crochet and for knitting, books, Pinterest, YouTube, free projects from HobbyCraft for crochet and knitting, crochet/knitting magazines, websites and blogs such as a crochet one I use called The Turtle Trunk for crochet.


Books, reading etc.

Books

Books I find are a great way to get lost in something. You can spend 5 minutes reading or you can spend an hour it’s entirely up to what you feel able to do. There are lots of book genres out there so I’m sure you’ll find something you enjoy.

I used to love reading but when I got ill I lost the ability to read but I’ve started to pick it back up again. Sometimes I can read a lot others times my reading ability slows down again which is why I love audiobooks as an alternative but I do love reading a book in my hands.

There are things that can help you with reading such as reading windows, reading rulers and coloured overlays to help reduce visual stress. Many smartphones now also come with a built in CCTV magnifier so using that to enlarge the text may help too. If you struggle to hold a book you might want to try a book holder to make it easier for you - the one on the link sits on a table but you can get ones with a clamp that you could attach to a bed side rail or grab rail.

You can buy books from a number of places, bookstores obviously and also Amazon. I personally like to get second hand good quality books as they are a lot cheaper; one place I order from is World Of Books.


e-books

These are a good alternative to traditional books. I like e-books as I find them to be more accessible than traditional books.

You can buy e-readers such as the Amazon Kindle, the Kobo Clara, the Lenovo and many other makes and models depending upon what you want out your e-reader such as Bluetooth, paper white screens, stylus pens, connection to the WiFi and audiobooks etc.

I personally just use the free Kindle app which I’ve downloaded onto my iPad so here I can have all the accessibility options and settings I need. I also get e-books with my subscription to Scribd.

I find e-books cheaper to purchase and some of them can sync with audiobooks I have on Audible. 

If you’re an avid reader on Kindle you can subscribe to Kindle Unlimited which gives you access to a wide range of e-books, audiobooks and some magazines too.

I find my Flexzi great for holding my iPad when I’m reading an e-book and if you have an e-reader you can attach the case via a Velcro patch to the Flexzi so you can mount your e-reader to the Flexzi stand. You can also buy remote controlled page turners for Kindle e-readers, iPads/tablets and iPhones making it easier to read in bed. I find using a remote saving me a lot of arm ache especially when I’m laid in bed reading.


The Happy Newspaper

The Happy Newspaper I find is a nice alternative and it’s a really easy low energy activity I find. It gives me the opportunity to be able to read but in a more accessible way. You can easily dip in and out of the newspaper reading just a couple of articles at a time if that’s all you can manage and as the name suggests it’s full of happy and positive news stories so it’s very positive and upbeat. I love the illustrations and design of the newspaper. It comes in compostable packaging and what I do with old newspapers is I cut out news stories and put them in pen pal letters and I also use the newspaper for my envelope art.


Magazines

I’m not really into magazines like I used to. I used to like Elle, Elle Decoration and Vogue. I also used to subscribe to Mollie Makes magazine which I liked as each magazine came with a free craft kit of some kind. I also get my membership magazines from the charities I’m a member of.

What I like about magazines is you can dip in and out of them. You can read an article here and then put it down to pick up later. They also tend to be filled with a variety of different kind of articles so there might be one aspect that might not particularly take your interest but there might be other features on other topics that do interest you. Articles also vary in length from small columns to two page spreads so you can just read what you feel able to do at that time.

There’s all sorts of magazines out there on a wide range of topics from lifestyle, interior design, fashion, crafts, various hobbies mindfulness and wellbeing to sports and more. The only downside is when buying a magazine you generally want to flick through it to see if it’s something you’ll like before you buy it; you can’t do this if you’re buying a magazine for the first time online if you’re unable to go shopping in person. My advice is if you’re unable to go and buy a magazine in person yourself if possible ask someone who knows you well to browse the magazine aisles for you to find some magazines that they think you might like and if you do enjoy that magazine then you can in future buy it again online. Alternatively you can now read online magazine such as on the Kindle app.

Some places to buy magazines from are supermarkets, local small shops, WHSmith, magazine.co.uk and Kindle Magazines.


Video/Audio content

Audiobooks

Audiobooks are pretty much a lifeline for me. I like listening to a book as I wind down for bed and when my energy levels are low I like to just lay in bed and listen to my current book.

If you have a ‘print disability’: 

A print disability may refer to someone with a visual impairment, cognitive impairment, specific learning disability, such as dyslexia, or physical disability. With a physical disability a print disability may mean that the person struggles to read a book, hold a book or turn a page for example. 

Having a print disability may make you eligible for free audiobook libraries or a subsidised subscriptions with some audiobook libraries.

Some of the audiobook libraries I’ve used and would recommend are:

  • RNIB Library (free) - audiobook app or audio CD’s can be sent to you; as many books as you want each month. 
  • Listening Books (subscription or you can have the fee waived) - audiobook app; as many books as you want each month.
  • Everand aka Scribd (subscription) - audiobook and e-book app; as many books as you want each month. 
  • Audible (subscription) - audiobook app, can sync with some kindle books, one credit = 1 book a month; more credits can be purchased, offers available both on signing up to the library and also on books such as 2 books for 1 credit or £1.99 books, there is also the plus catalog with unlimited books available.
  • Your local library (free) - many now have an online audiobook library or may have a home library service where volunteers can bring audiobook CD’s out to you.


BBC Sounds

This is an app but you can also access it online too. On there you can listen to live BBC radio stations, past radio shows, check out the radio schedules, listen to music and BBC podcasts.

There’s lots to chose from each radio station and their shows are quite different, some have chat shows, some play a variety of music genres depending on the station, some discuss current affairs, some commentate live sports and more.

The music you can select from a range of playlists of different music genres.

There is a wide of podcasts (most of the podcasts I listen to are BBC podcasts) and they also come in a wide variety of genres and cover a wide variety of interests and you can listen to BBC podcasts on other platforms like Apple Podcasts too.


Podcasts

I really enjoy listening to podcasts and I listen to a wide variety of genres of podcasts from true crime to talk shows through to documentary podcasts.

I listen to a lot of BBC podcasts that are available on BBC Sounds but I get them through Apple Podcasts. You can also get podcasts on other platforms like Spotify or Google Podcasts.

There are a lot of home grown podcasts out there too that people do for enjoyment or as a hobby or because they want to give a platform to others to give their guests a voice on their show a voice. 

Some podcasts are in an interview style, some are chatty, some are more informative and information giving, whilst others are dramatised. There’s so so much out there you’re bound to find something that interests you and in a style you like too.


Radio

I quite enjoy listening to the radio sometimes depending on the station and what show is on. Personally I like BBC Radio and I listen to it through the BBC Sounds app but there are a lot of other commercial stations out there too that you can listen to either through apps, the web or on a DAB radio.

Sometimes I like putting on stations that play music other times I just like the talk shows where they just discuss current affairs and have guest speakers on the show. I find the talking on the radio gives me a bit of company.


Music

This can be something enjoyable to do that won’t require too much energy. You can get music on places like Apple Music, Amazon Music, BBC Sounds or Spotify. - Some of these you can access the music for free others you have to subscribe to and/or you may get ads in between songs.


TV programs and films

Watching TV programs and films is another activity you can do in bed. I love getting into a good box set or having a cosy film night.

You can watch either on a television in your bedroom or on a tablet or laptop. For me this is where my Flexzi 3 iPad/tablet mount comes in super handy especially when I’m reclined or laid in bed.

You can either watch live TV or catch-up streaming TV such as on BBC iPlayer, ITV Hub, All 4 etc, or on subscription services such as Netflix, Amazon Prime Video, Disney+ and more. If you don’t have a smart TV you can buy a Roku to access streaming channels on your television. (Also if you’re in the UK make sure your household has a TV license.)


YouTube 

I quite enjoy YouTube and I like the variety of what’s on there; there’s literally something for everyone. I also like that you can find videos that vary in length from 5 minute videos through to 1 hour documentaries. Some TV channels also share their programs or clips of their programs on YouTube. Then you also get more home grown YouTube channels.


Gaming

Handheld Gaming

The first hand held gaming consoles that come to mind is the Nintendo Switch (there’s different versions of these like the Switch Lite) but there are others out there. You can just buy handheld games consoles that play just one game like Tetris or tamagotchi. I don’t have a handheld gaming console myself as it’s not something I think I’d be really into but it’s an easy activity to do in bed and there is a wide choice of devices and games to choose from out there. - I do however miss my Nintendo DS Lite though that I used to own and I wish that I still had that as I enjoyed my DS and the games I had for it.

If you have a television in your bedroom you might also want to play games on things like an Xbox or Play Station.


Tablet/phone games

I enjoy playing games on my iPad and iPhone. I like to play a variety of games some of my favourite things to play are card games, Angry Birds, 1010, Scrabble, Two Dots, The Sims, design games and more. 

I find it easier personally to play on my iPad as the screen is bigger. I can also also dim the screen and reduce the white point to help with my light sensitivity.


Digital colouring 

If you’re not a big fan of traditional colouring or if it’s something that you find difficult to do you might want to try out colouring game apps instead. There’s lots to choose from from drawing apps, to picture colouring. Some apps are free and others you subscribe to. You can find them on your App Store on you phone or tablet.


Games

I am a big fan of games and many can be played whilst you’re in bed; they’re also a great way to spend time with others and ease some of that isolation you may feel. - This is where an over bed table comes in helpful. 

There are so many games out there, more than I can list. There are different board games; some of my favourite games are Bananagrams, Quirkle, Carcassonne, Rummikub, and Splendor. Some of these games we have to get the travel version of so they fit on my over bed table but me and my family manage to play many different games on an over bed table even my smaller table before I got my bigger over bed table.


Beauty

Nails

I always feel brighter when I’ve done my nails. (I own more bottles of polish than I dare count!) You can buy nail polish bottle holders if you’re worried about knocking over a bottle of polish; I also use an old flannel to put under my hand for any accidental mistakes.

I love doing nail art too from simple nail art animals, using nail foil, stickers, tape or water transfer stickers there’s so much you can learn to do. (Pinterest is a great place for inspiration and tutorials.)

If doing your own nails isn’t something that is possible for you to do you could ask a family member, friend or caregiver to do your nails for you. Alternatively some nail techniques work in the community and can come to you and I’m sure they can find a suitable set up to from your bed. To find mobile nail technicians just search for ones in your area on places like Google or social media such as Facebook or ask someone to ask around for you.


Hair

Another thing I love sitting in bed and doing is styling my hair. Feeling pretty, even when I’m going nowhere nor really seeing anyone makes me feel better and boosts my wellbeing. (I touched upon this in my Living with Severe M.E. post.)

I like doing different styles and watching YouTube video tutorials and learning how to do new styles. I’ve found videos on low-energy hair styles to more complex styles that I still haven’t quite mastered yet. But it’s another activity you can do in bed and something new to learn as well plus making you feel a bit glam at the same time.


Massage

Like nail technicians you can get mobile beauty therapists; you can find specialist beauty therapists who specialise and have training in treating people with chronic health problems. The latter might have more understanding in your needs from massage therapy and how best to treat you.

I see a lady called Hollie and she works in the community and brings a whole set up with her when she comes and Hollie will tailor everything to you. She’ll massage you wherever you feel comfortable so some people she treats in their wheelchair or in a chair but for me I lay in my bed.

To find medically trained massage therapists try looking at the Amethyst Trust 


Rest

Rest means different things to different people. For some it’s not doing nothing and allowing the mind and body to stop for a while, for others this doesn’t work for them and they find they prefer to do a restful activity. Here’s a blog post on rest that I wrote if you want to read more.


Mindfulness meditation 

I find taking time in the day to rest is really important for pacing especially as I have an energy limiting illness so I always try to schedule in at least one rest period in my day especially after a high level activity.

There’s lots of different meditations out there from body scanning, to breathing exercises, visualisation and more. I really like the Calm app but there’s others out there, my advice is to go on your app store download a few and try them out before committing to a paid subscription. You can also get some free mindfulness meditations on YouTube but some do have adds in the middle of them so it’s a bit hit-and-miss. I really like the colour meditation that I found on YouTube that I find very restful.


Soundscapes

Soundscapes are a different to doing a mindfulness meditation. I find listening to soundscapes gives my mind and body the opportunity to just stop for a while so I’m not constantly on the go physically, mentally or cognitively. Sometimes I listen to a soundscape for just 10 minutes sometimes it’s an hour, especially if I’m feeling burnt out and crashed.

Some soundscapes are just repetitive sounds like waves crashing on a beach or rain falling on leaves. I prefer constructed soundscapes (I’m not sure if that’s the proper name for them but I’ll go with that). These are soundscapes that almost take you to a place and take you on a journey, like for example my favourite Central Park soundscape it takes me through a whole sequence of sound effects to make up a narrative to make me feel as though I’m really there. I here dogs barking, people taking as they walk past, passing vehicles, sirens, an overhead plane, the chime of a clock tower bell, a vendor cart being pushed, a  bicycle, children playing and more. I also like the constructed Costa Rican jungle soundscape. Both of these I get on the Calm app but I’m sure you can find them elsewhere on other relaxation apps or on YouTube.

I used to use the Better Sleep app and on there as well as there being a bank of meditations and sleep stories you can also construct your own soundscapes including ASMR sounds.


Other activities 

Pen Palling

Writing letters to friends and pen pals is something that I love doing and it’s something that I’ve done for many years now. I’m definitely a believer than hand written mail is much nicer than a digital message; it’s much more personal I feel too.

You don’t have to have lots of supplies to get you started with pen palling, just a writing set or some note cards or some hand made cards, pens, maybe some stickers and/or washi tape and of course stamps. You can also send postcards too as an alternative.

There isn’t a set amount to how much you write, some of my received/sent letters are a few pages long others are just a little postcard. What I love is that between me and my pen pals we all understand that what we’ve written, however little or much is what we’ve been able to do at that time, especially for shorter replies. Often with my longer-ish letters they do take me days to write (or type) and I just add a little here and there until my reply is finished.

Like I just said above instead of hand writing your letters if it’s easier for you you could type your letters. When I type my letters I jazz them up on my computer with coloured font and I add in pretty illustrations like flowers, koalas or rainbows.

Here’s a blog post I read on how to start pen palling.

If you struggle to write or type but would like to send mail to a friend you could ask a family member, friend or caregiver to write down on your behalf what you want to say. I know a friend of mine does this and it still enables her to send mail to friends when she is able to and it means a lot to me to hear from her.


Warrior Card Swap with the CWC

An alternative to pen palling if you just want to send occasional mail could be joining in the with Warrior Card Swap run by the Chronic Warrior Collective.

This is just a monthly card swap that you can opt to join in or out of each month (in case you’re having a bad time). You can opt to write to someone within your own country or internationally; in return you’ll receive mail from someone else. Don’t panic, if you opt in and get stuck and find that you can’t send mail to your swap you can click for help and the Yikes Team will step in for you.

You can also opt to receive faith based cards if you wish. You have a little bio which your match sees so they’ll know a bit about you. You can also opt to say that you’d be interested in making friends and pen pals with your swap if you wish. I’ve made some lovely friends and pen pals through the swap and I find the CWC organisation very supportive if I need and help, support or advice.


Blogging

This activity may or may not interest you but I thought I’d include it as I find for me it’s something I can easily do from my bed.

There are different blogging platforms; I personally prefer to use Blogger but there’s also also WordPressSquareSpace and Wix to name a few. Different people get on with different sites and it depends on what layout design you want your blog to look like and the features available and the ease of creating content for your blog as well as adding external elements to your blog such as pop ups etc. I did try WordPress myself for a short while but I personally couldn’t get on with it so I switched back over to Blogger. You can also either get a free web domain or you can purchase a website domain like I have for this blog.

What I like about blogging is I can work at my own pace. I can type here and there for however long I can manage at that time and I can pace myself with getting blog posts written. Then with special events like Awareness Events if I plan ahead I can try to get a post pre-written and ready to auto publish for that event like I’m going to do for next month (May is a busy month as it’s both EDS and M.E. Awareness Month!)

So starting a blog might be something you want to consider if you’re looking for a new project or hobby. You could have a particular focus such as sharing short stories or poems that you enjoy writing, or you could give it a focus on a special interest of yours such as book reviews or like me you could just write about anything and everything that interests you.

Even if you just write one post a month that’s still something and it’s more a project and activity for yourself to work on.

If you don’t want to blog yourself there are plenty of bloggers out there who all blog about different things so I’m sure you can find some different blogs that might take your interest to read them.


Journaling 

There are lots of different types of journaling: bullet journaling, art journaling, photo journaling, scrapbooking journals, planners, junk jornals etc. 

I’ve kept a photo journal in the past; I have a Sprocket photo printer that prints photos off my phone and I can edit the photos, add text, stickers, borders etc. and the photo is a sticker so it’s perfect for photo journaling. 

I also have a bullet journal, I’ve had a few of these over the years. My current one I just journal different things on like my fundraising, I keep a log of the books I’ve read and rate the out of 5 and have a pixel a day migraine log, blog and YouTube video ideas, so rather random but quite helpful. I like the visual nature of it; it’s like my brain in a journal and I’m a creative person as it is so I think having a bullet journal suites me. I’m also trying to use it more to steamline my life.

You can buy bullet journals in all sorts of sizes and designs. I love the illustrated Roger La Borde journals which I used for my photo journaling. You can also buy starter kits such as these I’ve found for you:


Pinterest

Pinterest is an app, you can also log onto it on the website too. I really enjoy spending time on Pinterest looking for ideas on different things and pinning ideas to my different (and very organised) boards. I get ideas for my bullet journal, nail art, my home, makeup, crafting, organisation, my Cricut machine, pen palling, hex codes for colour pallets and more. When I was getting ready to move home I designed my new home all on Pinterest and got lots of fab furniture ideas such as my craft desk IKEA furniture combo. I can spend a long time on Pinterest and I find I get lost in it and I find it a great activity and a fab way to get inspired.

Tuesday 19 March 2024

Crash

Crashing is what people in the M.E. community refer to when they experience a flare up of symptoms, usually quite significantly.

This is what a crash can look like: You become more hypersensitive to sound, light, touch, smells, even small amounts of sensory stimulation can be difficult even physically painful. Pain levels increase and energy levels decrease even more than usual. Muscles weaken, ache and spasm, you struggle to tolerate being sat up so you have to lay in bed, your immune system goes down and you experience cold and flu-like symptoms.

A crash can last a day, a few days, a week or two, or even months. Crashes are usually brought on by over exertion or an illness or such thing. Sometimes especially for those with severe M.E. even a small amount of ‘overdoing it’ can trigger a crash.

Living with M.E. is like walking on eggshells as I don’t know what will trigger a crash or when I will crash and when I do crash I don’t know how long I’ll crash for or how severe the crash will be. Sometimes I can predict a crash such as when I had my last surgery, when I was in the process of moving, when I leave the house, but I still don’t know the severity or length of my crash. Sometimes even just having a tidy up in my home and over exerting myself that way will lead to a minor crash lasting a day or two. Leaving the house definitely leads to a crash.

Sometimes I crash immediately afterwards like if I’ve overdone it on an activity and then I’ll spend the rest of the day and the next in bed with zero energy, in pain etc. Other times the crash can have a delayed onset, like it won’t hit me until the following day.

For me crashes are the hardest aspect of living with M.E. and they’re difficult for so many different reasons. The first few I’ve already mentioned: the heightening of my symptoms, the unpredictability in lots of ways. Also the emotions, like upset of the amount of pain and fatigue I’m in. FOMO: the Feeling Of Missing Out, frustration and regret wishing I hadn’t done what caused my crash but also frustration at my M.E. plus the isolation as well as grief. Then also there is the challenge of needing more support from my care team (PAs and carers) as I’m not able to do as much myself so there’s more reliance on their support taking away my independence and dignity. Finally with long term crashes there is always that worry and questioning ‘is this my new normal now?’ when the crash is no longer a crash but how things are for me from now on.