HAWMC Day 22: Finding Sanctuary Amidst the Chaos of Chronic Illness…

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon given prompts.

Wednesday 22nd April: Hobbies 

Running and 3PM dance parties are some of our favourite hobbies at WEGO Health.  Tell us, what are YOUR hobbies?  Love to crochet?  Can’t stop collecting rocks?  Take photographs of everything?  Share your favourite past times.

Sitting here preparing the post for today, I feeling particularly bad due to the symptoms I experience as a result of the brain stem lesion.  The dizziness and vertigo are making it difficult to do anything due to the severity, and the trembling in the legs is so bad that it has already lead to several falls, and it’s only early afternoon.

Today’s prompt above asks us to write a post about our favourite past times that makes us happy and provides us with a respite from life with chronic illness.  This is a post that I have already written during a previous #HAWMC and which you can read here.

Instead, I have decided to write a post about the little practices and routines that help me during a particularly bad flare.  By doing so, I not only hope to help others who may find comfort in these during their own relapse, but also by reminding myself of the little things that give me comfort and pleasure even during the bad days, I can also help myself in the process.

An important aspect of living with chronic illness, is in my opinion, having your own personal sanctuary; for me, this is my bedroom.  My little haven where I can go to escape from the stresses of everyday life, and where I can receive comfort when chronic illness is beating me.  It is also an homage to me, filled with everything I love.

I love butterflies, as they are a symbol of hope and change, and as a result there are a lot of decorative touches with butterflies throughout my room.  The space therefore, for me is not only comforting but is also a space where I would love to spend a lot of time, which for someone living with chronic illness is vital.  Little touches such as soft and luxurious cushions also gives comfort for the times when there is a need to stay in bed for long periods.  I have also added things like inspiring quotes and affirmations throughout my room, cards pinned to my positivity board, prints hanging on my wall, or on little trinkets to keep in my comfort box.  Including these affirmations and positive quotes in my personal space, is a reminder that despite the struggles faced as a result of chronic illness, things however will get better.

Furthermore, living with chronic illness and as a result spending most of the time at home can lead to feelings of isolation and loneliness.  Making new friends and maintaining existing friendships can be difficult.  As a result, I have used the internet and social media to meet other people also living with chronic illness, and have even made several pen pals.  Writing is something that I love, and so using this hobby, I write letters and cards to others who are also struggling in the hopes to help lift their mood.  By helping someone else, it also helps to lift my spirits also, and is reciprocated by lovely and thoughtful cards dropping on to my doorstep.

When it seems that chronic illness is controlling my entire life, and due to the severity of my symptoms as mentioned above, a lot of time is inevitably spent in the bedroom, lying down and trying to find any relief.  During these time, I find that entertainment is a vital tool, not only keeping myself occupied but also to distract myself from symptoms such as pain, dizziness and trembling in the legs.  I often find solace in various films and TV shows on streaming services such as Netflix and Amazon Prime.

Recently, I have loved watching episodes of ‘Once Upon A Time’, often watching several episodes concurrently.  During times of painsomnia (insomnia as a result of pain), I also find watching films or TV series on my tablet to occupy my nights without disturbing anyone else!  Books are also fantastic distraction tools, as they often pull you into the story, that you lose yourself in the plot, forgetting about everything else.  Audiobooks are a great alternative when symptoms makes it difficult to physically be able to read.

Addictive viewing amidst a bad flare in symptoms
Addictive viewing amidst a bad flare in symptoms

As mentioned in earlier posts this month, colouring books are the new craze and one which I have bought into.  They are incredibly relaxing as it helps the mind focus on the present and not on any stresses that may be troubling an individual.  I have found it particularly effective in helping to distract my mind from the pain in my legs.  I love the intricate patterns and detail that appear in the adult colouring books, which are coming popular and provides you with some artwork to decorate your living space! I also enjoy other craft projects such as making cards, and sometimes even a go at jewellery making.  Also, a great way of being productive amidst being physically incapacitated by symptoms.

Painting my nails is just another hobby and activity that I like to do during the bad times as a result of chronic illness.  Living with a variety of symptoms affecting the body, and even sometimes noticing physical changes as a result can be difficult and lead to issues surrounding body image.  For me, living with constant trembling in the legs, and very often in the hands can be miserable and very uncomfortable, noticing small tremors in my hands serves as a physical reminder that there is something very wrong with my body, so to make me feel better, I like to paint my toe and fingernails some bright and bold colours puts a smile on my face and makes me feel better and more confident about my appearance despite these troublesome symptoms.

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