Living with chronic illness can be a real rollercoaster of symptoms and emotions. Some days it feels relatively easy to live life within the limitations forced upon you. Those are the days when symptoms are more easily manageable, when little glimpses of hope shine through, and when you realise that maybe, just maybe, you’ve got this.
But then there are the days when it feels as if everything is falling apart, including yourself, and just getting through the next minute feels like climbing a mountain without the appropriate gear. Such days look different for everybody, as we all have our own personal limits that once crossed feel like hell on Earth. But I think most people with chronic illness know what I mean when I talk about “the worst days”.
For me these days are the ones when my neurological symptoms make it impossible to do anything beyond laying as still as possible in a darkened room. Migraines that go on for days, dizziness and vertigo that scare me so much, fatigue that makes my entire body collapse… On those days something as simple as sitting up in bed to watch a movie or read words on a page become impossible. Nor can I cope with the stimulation of having a conversation with somebody, either in person or online. It’s a very lonely existence, and one which has a massive impact on my mental health.
As you know, I’ve had many of these days in 2020 since my bout with labyrinthitis in January. It has been a long, hard year for everyone, what with Covid restrictions and lockdown, and I previously wrote a post with tips and resources for isolation gained from my years of being stuck at home chronically ill. But quite a few of those things are beyond my ability this year and so I wanted to follow it up with another post with my favourite resources for the worst days.
Some of these will be inaccessible to others on their worst days, I know. We all have different things that we can tolerate when things get really bad. But I do hope that some of them will also be helpful for you too.
Audiobooks are one of my favourite ways to pass the time when I’m feeling really ill. It’s hard for me to remember how much I resisted listening to them for so many years, preferring instead to hold a book in my hand (yep, I resisted eReaders too). I didn’t think I was a very good audio processor, as my mind has a habit of wandering off and missing bits. And to be honest that’s still a problem for me! But it’s so easy to skip back on an audiobook that it really isn’t that big of an issue.
I have a library full of books I’ve already read many times before for the worst of the worst days, or for when I can’t get to sleep and need something in the background I can listen to without really listening. They are like my version of a comfort blanket as I know the stories so well and can just lose myself in them without worrying about losing the plot of the story. That’s probably one of my biggest tips for the worst days actually – listen to something you know well, as it will give you a massive hit of comfort and nostalgia. For me these are mostly Tamora Pierce books, but I’ve also added a few newer finds to my list of books to listen to repeatedly, some of which I’ll list below.
I tend to stock up on new reads when there is a sale on Audible or Audiobooks. That’s how I first discovered Sorcery of Thorns by Margaret Rogerson, which I have already listened to twice already, and Elantris by Brandon Sanderson.
I also use Listening Books to borrow new books I’m not sure if I’ll enjoy or not. Listening Books is a really cheap annual subscription for those who need it (like me) and give me access to an online audio library. It was Listening Books that introduced me to Geekerella by Ashley Poston, which is the first of the Once Upon a Con series I now own on Audible and have listened to at least twice this year too. I also used Listening Books to borrow all the Harry Potter series and have some Terry Pratchett I want to borrow soon.
Again, I was pretty hesitant to listen to podcasts for a very long time because of how I found audio processing challenging in the past. But being able to pop on an eye mask to block out the light and just listen to a good podcast has really helped to keep me sane this year. There are so many to choose from and I’m only just starting to explore them so don’t have many recommendations. However my absolute favourite has to be Ear Biscuits, as I love listening to Rhett and Link just chatting away about whatever happens to be on their mind. It’s funny, it’s silly, it’s serious, and it’s poignant, all rolled into one weekly podcast. I love that variety.
If you listen to podcasts, do let me know in the comments which are your favourites as I’d love to discover some more.
Guided Meditations and Hypnosis
One of the things I find most helpful these days is doing some kind of daily meditation. I previously shared my daily chanting practice with you, however that has changed somewhat recently. This is because of the reports coming out about Kundalini Yoga right now, because for me a huge part of yoga is ahimsa (non-violence) and I could not in good conscience continue practising something created by somebody who caused so much harm. And whilst I know that mantra and chanting is a practice in many different paths beyond Kundalini Yoga, that was mostly what I practiced it in connection with and until I have had chance to explore it from other directions I do not feel comfortable chanting.
Thankfully I had already started to add in daily guided meditations before I decided to stop my daily chanting practice, and so I already had a new practice to continue with. This entire year I have been focused on spending some time each day getting out of my “monkey mind” and calming my body down with a meditative practice of some kind, and I do not know where I would be without it right now.
I’ve found some really lovely guided meditations and hypnosis tracks on YouTube, and I’ll try and share a post with more of them in another day. But for now here are three of my favourites:
1) HEAL by Paul Babin, which is a delightful multi-part meditation allowing you to just repeat this first part or keep progressing further with the other parts to let go of emotional pain and memories and calm the body.
2) The best headache relief by Alicia Fairclough, which is a really easy to follow hypnosis track that focuses on headaches and migraines. It’s never healed my migraines, but it certainly calms me (and then) down.
3) Guided healing meditation for dizziness and vertigo by Om Shanti Healing with Jill, which is one of the only meditations I have found specifically for vertigo and which I have found so incredibly calming during my most terrifying moments of dizziness.
I wasn’t sure whether to include this one or not, as I cannot watch things on my very worst days. However on those inbetween days when it’s not the worst of the worst but I’m still stuck in bed I do find comedies one of the best ways to cheer myself up. Again I often choose to rewatch things I know well, because they require less concentration and give me a hit of nostalgia which boosts my mood considerably.
Some of my favourites include Miranda, Dinnerladies, As Time Goes By, and The Vicar of Dibley. I’ve also recently rewatched The Middle and The Big Bang Theory. They’re all reasonably short episodes and because I know them well I can easily stop them midway through when I simply can’t cope with a whole episode. Many of these are available on Netflix and Amazon Prime right now.
There are others I’m longing to watch, like Grace and Frankie, Brooklyn 99, and The Marvellous Mrs Maisel, but my head simply can not cope with following new storylines I don’t know at this point, which is why I tend to watch the ones I know so well.
Another thing I have discovered I love this year is YouTube series that make me laugh or bring me joy. Videos on YouTube tend to be the perfect length for me when I want a quick boost without overtiring my brain. I’ve become completely obsessed with Good Mythical Morning (and Good Mythical More), although I sometimes have to stop watching as they make me laugh so much I get too dizzy!
I also really love watching reaction videos like TwinsTheNewTrend. There’s just something delightful about watching real people’s reactions to things that brings me a lot of joy, especially when I’m so isolated right now.
There really is something for everyone on YouTube, and the best part is it’s all completely free to watch.
I couldn’t create a list of resources I find helpful on the worst days without including some of the physical products which help me out. These include an eye mask to help block out the light when my eyes and head are super sensitive, Tiger Balm which gets rubbed all over my forehead and temples (and often ends up in my eyes by mistake – ouch), and a range of pillows including a wedge pillow to raise my head, a supportive neck pillow, and extra pillows for supporting my knees when laying in bed for extended periods of time. I also have a cooling eye mask and special migraine glasses to help when the migraines are threatening to kick in or are in full flow and I need a little bit of extra help.
Most of these things have been found by trial and error and I do think that over time you come to figure out the things that will help you the most purely by realising what you’re finding the most difficult and then searching online for solutions. Or, rather, getting someone else to search online for solutions if your head can’t cope with looking at a screen long enough to do so!
A gratitude journal
I couldn’t complete this post without including the importance of having gratitude on even the worst of days. This is something that my hypnotherapist asked me to do, and I’ve found it really helpful, because it truly has taught me that there is something to be thankful for every single day.
My particular gratitude journal asks for one thing I’m most grateful for that day, then has space for about 8 or 9 more things. I have been determined to fill up each slot and so I’ve really had to dig deep to find an answer for each line on my worst days. But do you know what? It really is possible. Some days I repeat the same super simple things – I’m grateful for food to eat, a roof over my head, free healthcare, podcasts and audiobooks, Tiger Balm, my phone… But other days I have more to celebrate like getting out of bed, playing with Little Man, making my own lunch etc.
I find it a really challenging but helpful practice to fill this in each day, because it reminds me that I have the ultimate control over how I view my life, no matter what happens to me. And that helps me to feel less helpless in all of this. And that, my friends, is the greatest gift of all.
So, what about you?
What are your favourite resources for the worst days? Share them with me in the comments, I’d love to hear all about them.