Tuesday 25 May 2021

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.