Finding ways to keep doing the things I love

My health and symptoms greatly affect me on a day-to-day basis and as a result I've had to find new ways to adapt or change what I do to allow me to continue doing the things I love and enjoy.

Activities I love

Books & Reading

I used to love reading but I now struggle to do that both in terms of being able to see the small text but also at time being able to hold a book. I now access books as audiobooks which on my bad days when I'm not able to do much can be a bit of a life line. I also enjoy listening to podcasts an occasionally the radio. I enjoy the conversation and podcasts and the radio give me that connection to the outside world.

Also recently I started to read just a little on my phone where I can read in large print as well as turn on the screen colour filter which helps with my Scotopic Sensitivity and my pop socket on the back of my phone helps to make holding my phone easier.

Letter Writing

Letters to friends and pen pals is my way of being able to socialise. Writing can be difficult visually, cognitively, practically and it can also be tiring. Sometimes I  can only manage a short letter or postcard other times I can write a bit more. I tend to write or type here and there a few sentences at a time as writing a whole letter in one go is too much of a challenge.

Sometimes I use a voice activated software called 'Dragon' to dictate which helps with the hypermobility in my fingers and wrists as it gives them a break but this is a balancing act as talking can be quite tiring for me to do. A good computer set up is also essential such as my beanie wrist rest and tilted laptop stand to name a few things. 

Blogging & Vlogging

I love blogging and I've now started my own YouTube channel too. Planning out posts and video ideas in my bullet journal help a lot.

Outwardly my blog is nice and neatly organised but I have a lot of draft posts behind the scenes. On these draft posts I'll jot bullet point idea down and type a paragraph or two at a time until a post is ready and then I will schedule for it to auto-publish on Tuesdays. 

I've managed to bank up enough draft posts for a while now which has allowed me to have regular publishing days which I feel really proud and accomplished about.

The same is similar with my YouTube channel. I plan videos and film when I'm filming well enough on one of my 'really good' days and edit here and there until I'm happy with the video. I'll then upload it and add subtitles (which I do to try and be as accessible as I can for viewers). Like with my blog I'm trying to bank up videos and currently I'm a few videos ahead so currently like with my blog I've been able to make alternate Friday's my publishing day (it used to be weekly but I'e had to revise this) for the time being but I'll see how I go along and if I'm able to keep up with this.

Unfortunately that is the nature with having disabilities is the unpredictability and not know when you'll have a really good day to be able to film and the have the energy to edit and upload onto my YouTube channel. I love being a YouTuber but my health is so unpredictable and I have to prioritise and work out what is most manageable for me so that I still enjoy vlogging without the pressure and continuing to enjoying having a YouTube channel.

Aids, Adaptations & Other Things

These help me to continuing doing the things I love. Like I mention I use software like Dragon; I also use a mind mapping software called Inspiration to plan as well as my less technical bullet journal though I do handwritten mind maps in my bullet journal too.

If I've handwritten a letter or done some typing I find wearing my splints help to support my wrists so they can rest and recover afterwards especially if they're getting a bit floppy or strained.

I also find timing activities helpful as when I'm doing something enjoyable as we all do we can get a bit lost in what we are doing which for me can result in me over-doing it and end up 'crashing' or 'flopping' and my pain, fatigue and other symptoms worsening. Regular breaks and rest periods and also help whether this be a short break mid activity or one of my scheduled rest periods as part of my Daily Plan.

What my bad days look like

A subscriber suggested, if possible, that I write on one of my bad days to give a glimpse into what one looks like. Unfortunately on my bad days I'm unable to pick up and write a blog post; I'm not even able to write a whole blog post on a good day as I can only write paragraphs here and there as that's how I've adapted to be able to blog.

I can have bad days for a variety of reasons. It could be due to 'payback' or Post Exertion Malaise which is a classic symptom of M.E and is a exacerbation of symptoms often brought on following an activity, even minor activities such having a bath or going out for a short walk in my wheelchair with my PA. A bad day may also be the result of me having a migraine or a seizure for example or if I'm having a bad day with pain levels or if I've had a night of broken sleep; again sleep problems are very common for people like myself with M.E. 

On my bad days it's a bit like trying to hold two positive magnets together with the resistance when trying to connect them together. This is what my whole body as well as my mind feels like on a bad day. My mind and body resist moving, thinking and doing. Everything is a struggle everything I try and do worsens my symptoms and leaves me feeling worse and worse the more I try to do things. This often makes me feel like I'm trapped in a mind and body that I have no control over.

My bad days are often spent laid in a darkened room with minimal noise. Audiobooks are a bit of a life-line; especially on my bad days. I need to be in the dark and quiet as noise and light along with other senses like the weight of my duvet are physically painful. I'm also in a lot of pain which I feel in every part of my body. My joints and muscles and nerves all cause me pain; sometimes even my strongest pain relief or other medications don't fully relieve my pain. I can also feel so exhausted that I want to cry but despite my high levels of fatigue and exhaustion sleep doesn't help.

On my bad days I rely more on the help of my family and PA to help me with some of the most basic of everyday tasks stripping me of my independence which can be difficult especially as a young adult.

One of the big challenges is trying to recover from a bad day, so more often than not I don't really have a singular bad 'day' it can go on for days sometimes a week or so depending on the reason for what has caused the 'bad day'.

Tips for living with M.E - M.E Awareness Week

Living with severe M.E comes with many challenges. Alongside dealing with the symptoms and medical side of the illness including juggling health and social care services which at times often leave you feeling let down, something I know for my own experience, there is the social and emotional aspects of the illness that can be challenging. Often you feel isolated as you're not well enough to go out and meet a friend for coffee for example or you may struggle to even see a friend at home as conversation can be tiring to do. I have, despite having severe M.E myself found ways to learn to live with the condition so here are some of my coping tips.

Make your bedroom a cosy happy space

Making your bedroom a cosy space makes it I find a nice place to relax and enjoy being in. This can include things like having bedding that you love, and putting up fairy light and having photographs on display. Most of all I love my giant notice board where I put up all my mail sent to me by friends and pen pals. It's nice to things on display that make you smile when you look at them. I'm also a person who love sensory things so I have my aromatherapy diffuser and also a Mathmos Space Projector both of which I find calming and relaxing.

Keep your bed tidy

Often my bed has a lot on it as a way of being able to keep things to hand but I've found that having a clear bed makes it a more relaxing space.

As a way of keeping your bed tidy you might find it handy to have a pocket organiser which you can tuck under your mattress. This way you can keep everything that you need to hand without cluttering up your bed.

Organisation

Being organised can really help. I can't profess to be the most organised person but I've found that trying to be as organised as possible can help. This includes keeping the floor space clear but also have some sort of organisation in how you store things in wardrobes, draws and cupboards.

I've found labelling boxes, cupboards, draws etc helpful so either myself or others know where to find things. I also find having sections for things helps - you can see and example of how I do this in my YouTube video 'How I organise my craft supplies'.

Have a schedule

One of the things I did with my occupational therapist was to create what we called a 'daily plan'. This is a schedule for the day with alternating activity and rest periods with other slots for things like meals, appointments, physiotherapy and winding down for bed. 

I find having a schedule helps give my body predictability and it helps me with activity management and pacing.

Plan

As well as my Daily Plan planning in advance hugely helps to try and minimise as much as possible the payback PEM (Post Exertion Malaise) or PENE (Post Exertion Neuro-immune Exhaustion) - the latter affecting me more. 

So as an example when I went for my pre-admission assessment at the hospital (which was on a Tuesday) I planned a restful weekend and Monday. I also had my COVID vaccine that week so I requested that to be on the Friday to allow me a couple of days to rest and recover. It didn't stop me experiencing a flare-up in symptoms and PENE but it did help having that gap.

Learn activity management, pacing & grading

These three tools are pretty essentials to living well with M.E whether you have mild or severe M.E. These tools I find help me manage my symptoms and allow me to engage in enjoyable activities both on my good and bad days even if it's a really bad day and all I can do is lay listening to a book.

Here are some of my previous blog posts on this topic: 'Pacing', 'Pacing, Activity Management and Rest'.

Hannah Ensor has writing a great book on pacing which I'd recommend; It's called The Pocket Book of Pacing.

Finding ways to do the things you enjoy

Finding ways to adapt on how you can continue to do the things you enjoy can be immensely helpful. For example if you enjoy reading but struggle to read you may prefer to listen to an audiobook. Or if you enjoy writing to pen pals it may be easier to type letters rather than write by hand.

Audiobooks & Podcasts

I've found audiobooks and podcasts a bit of a lifeline. I struggle reading so audiobooks are a lot more accessible for me. I also find that they're good for my bad or rest days as I can just lay in bed or sit in my rocking chair and just listen to a book. Again audiobooks help pass the time and there are lots of different places where you can get audiobooks from. I personally use the RNIB library but I've recently been recommended some other places where I can get audiobooks from.

Start a project

I find projects help give me something to focus and work on and it's nice to see my project grow and develop. This is partly why I started this blog and now I've moved onto also keeping a YouTube channel. I also have my photo journal and my One Second Every Day project  As well as that my other project is my BSL (British Sign Language) course; it's making me longer to do than planned but it's nice to work on when I can.

Write letters

Writing pen pals are a great way to "meet" new people and devolve new friendships and to "socialise" with the people you write to. I love letter writing to both my pen pals and my friends (I see it as my version of sending a text) and reading letters hearing about my pen pals lives and reading what they've been up to and our common interests that we discuss. Just as equally I love replying to my pen pals and putting letters together.

If you don't feel able to commit to writing to pen pals you could join the Chronic Warrior Collective's monthly Card Swap which each month you can opt in or out of and you only commitment it to send one piece of mail to someone and in return you will receive something from another member of the swap.

Try and experience to outside world

Often when gong out is limited it can aid that isolation from the outside world. When I was in my long hospital admission I liked having a bird feeder which what stuck to my window and I liked watching the birds. I also like people to send or give me postcards such as when my Dad and stepmum have been away or from pen pals of the places where they live or have visited. 

If you are able to on a nice day try and sit outside if you can, even if it's just for 5 minutes, or get someone to take you out for a short walk to get some fresh air.

Practise self-care

Self-care is so important for or wellbeing; it helps us physically, mentally and emotionally. I feel personally that self care is even more-so important when you have a chronic illness. I talk more about this and self-care in this blog post which I wrote for Self-Care Week: 'Self-care when you're chronically ill'.

Along the topic of self-care I'd also recommend getting into the routine of practising mindfulness on a regular basis.

Other aspects of self-care is making yourself feel nice so this could be using your favourite toiletries, having a skin-care routine, putting on some makeup, learning different hair styles and putting on your favourite clothes or pyjamas. I have been known to spend the day on my bed wearing my favourite vintage style dress just because I felt like dressing up nice.

Also, don't compare yourself to other people. I'm guilty of that myself seeing people around me doing an achieving the things I'm wanting to do and achieve myself including those I know which M.E or other chronic illnesses. But our circumstances are uniquely our own and everyone is on their own path. Equally what we see especially on social media we have to remember is a carefully selected snippet of people's lives and we don't see or know the full picture of what that person is sharing, or even if what they are sharing is true.

The challenges of being hypermobile - HSD/EDS Awareness Month

Being hypermobile is a lot more than 'just being bendy' as a lot of people think is what Hypermobility Spectrum Disorder and hypermobile Ehlers-Danlos Syndrome is about.

HSD and hEDS are hereditary conditions connective tissue disorders. I've been diagnosed with both conditions and according to my care team, in my case, there is very very little difference and in any case people with both hEDS and HSD can experience the same symptoms, problems and complications. I personally just refer to it as 'my hypermobility disorder' plus his saves a mouthful words most people don't understand!

Connective tissue, or collagen, is like the 'glue' of the body. It keep joints in place and organs together. When the connective tissue is faulty as in the case of those who has HSD/hEDS people's joints are help in place as they should and organs become too stretchy causing secondary complications with the affected organs. For me my joints regularly sublux (partially dislocate) as well as fully dislocate which is acutely extremely painful, but it's something that I've had to learn to live with; I have joints that are more affected than others such as my right shoulder (as this is the main part of my pony where I experience non-epileptic myoclonic seizures so my arm jerks a lot.), my right knee, left hip and my wrists and thumb and finger joints. The more my joints dislocate the looser the joints becomes making it more easily to sublet and dislocate. As well as joint problems the main organs that are affected for me is my gastrointestinal organs, bladder and my heart.

Along side the acute pain my joints and surrounding tendons, ligaments and soft tissue I experience joint pain on a near constant basis to varying degrees. 

   © Stickman Communications   

Aside from this is the day-to-day challenges. Just simple things like using a pen or typing, using cutlery or chopping food pose problems. I've found ways around this like taking regular writing and typing breaks and eating foods that don't required to be copped. I also use adaptations like adaptive scissors, pens and electric can openers and I'll cut packets open instead of prising them apart.

Wearing splints when needed also help and my physiotherapist is going to take to me about taking my joints to help give them more stability..

Every day is a challenge but as with most disabilities you learn to adapt and live with the challenges that your disability brings.

May's Monthly Make - Woven Bracelet

May's Monthly Make is a woven bracelet using a circular weaving loom which I'll show you how to make

Difficulty rating: ★ ☆ ☆ ☆

You will need...

• Cardboard - I just used some scrap cardboard that was part of some packaging
• Pen
• Something round to draw around like a mug or alternatively a compass
• Scissors
• String or cord - you could use embroidery thread or the hemp string that was used in February's Monthly Make - a macrame keyring. The hemp string is what I used in this tutorial.

Tutorial

The video on YouTube has CC - if you click the video it will take you to YouTube; there you will find other craft tutorials as well as other videos I've made.