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


Welcome to the Health Activist Writer‚Äôs Month Challenge brought together by WEGO Health ‚Äď a social network for all health activists. ¬†Again, I am participating in the annual Writer‚Äôs 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.


Wordless Wednesday: Hope exists even in darkness…


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

Today’s prompt reads as follows:

Wordless Wednesday…We all know a picture is worth a 1,000 words. ¬†Post/share a picture that relays a message or story to the viewer


Finding hobbies and interests in the midst of illness and incapacitation…


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

Today’s prompt reads as follows:

Hobbies…We at WEGO Health love hobbies. ¬†Tell us, what are YOUR hobbies? ¬†Are you a rock collector? ¬†Scrapbooking? ¬†Photography? ¬†Dancer? ¬†Share your talents. ¬†(Pictures encouraged!)

Battling fatigue, dizziness, trembling and weakness in the legs can make it extremely difficult to take part in hobbies.  That it not to say I do not have any hobbies.  One of my loves is reading; ever since I was a child I was a bookworm and loved reading fiction books that will transport me to different places and times.  Or books just to escape from the reality of pain, dizziness and depression.  The love of reading, fortunately has not left me and I am a proud owner of a large number of books.  Those who know me, will already know that my favourite author is Jodi Picoult.  I have at least two shelves in my bedroom dedicated just to her books.  I love her writing style; the fact that each chapter is narrated by a different character enabling the reader to consider both sides of an argument and allowing the reader to determine their own opinions on the subject matter at hand.  Each book is thought-provoking, deep and thoroughly researched.  In my opinion, my love of reading, especially my recent devouring of novels are a result of the weakness and trembling in my legs.  Due to the mobility problems that are a result of these particular symptoms mean that walking can be difficult, sometimes even I am unable to leave my bed because of them, and so it is in these moments that my love of books are a real blessing, as it a hobby that I can take part in bed or wherever I am stuck with my uncooperative legs.

Another hobby of mine is collecting butterflies. ¬†As a lot of my followers and readers of the blog will know that I am a big lover of butterflies. ¬†In my opinion, butterflies are beautiful; the bright and colourful colours of their wings, but also they are a sign of hope. ¬†The hope that something beautiful can come from the end of an old life. ¬†For someone with a chronic illness like myself, it really symbolises hope that despite being diagnosed with a long-term health condition it is not the end and something positive can still be found. ¬†This is beautifully summed up by ¬†the proverb “Just when the caterpillar thought the world was over, it became a butterfly”. ¬†I have a piece of artwork which encompasses this very proverb within the piece. ¬†It’s a lovely piece of artwork and I have near it my bed as a positive reminder that good things will still happen despite having a chronic illness.


In addition to the piece of artwork, butterflies can be found everywhere in my bedroom! ¬†A butterfly clip on my curtains, a photo frame adorned with them and even on my wallpaper! ¬†I have just recently bought some butterfly LED lights to hang around my headboard. ¬†The lights are pretty and colourful and make a bad day a little better. ¬†As a symbol of hope and change, in my opinion butterflies are a perfect addition to be included in my own personal and private sanctuary. ¬†A sanctuary in which I can recuperate on my bad days, and just get away from everything. ¬†It’s a room which I spend a lot of time, so to make it as lovely and positive as possible is in my opinion very important.

Another hobby of mine, which I have been unable to do for a while because of trembling in my hands is card making.  I love making intricate decopauge cards.  It not only is it fun but doing them takes my mind off my pain and the dizziness that greatly affects my daily life. Again it is something that I have found to do despite my condition and one which I am still able to do even when my legs are too weak that I cannot stand or walk.  I am still able to drag to a table and chair and make cards despite the severe weakness and trembling. I like making them for friends and family for special occasions such as birthdays but I have also been asked to make them for others too.  It is a lovely hobby to create something both beautiful and special.  Here are some examples of the cards that I have made:

Comfort Box: Getting Crafty!

I was browsing on YouTube a couple of weeks ago, and came across a video by a young woman called Kelly, who like me suffers with chronic illness. ¬†In the video she describes, and demonstrates how she made what she calls a ‘comfort box’. ¬†It’s a box which on the outside reflects your personality and your personal likes and interests. ¬†On the inside, however, holds on the things that you hold dear – those items which bring you comfort, a smile on your face on the bad days; those days where you feel really unwell, or so down that everything seems like such a struggle.

So, I decided to make my own comfort box, and thought I would share you some photographs of the comfort box that I made for myself:

The front of the box with a couple of pretty butterflies and jewelled gemstones that reads Comfort Box’

The back of the box that again has butterflies and a couple of sunflowers – one of my favourite flowers and symbolic of my time at ‘Life 4 Living’
Again more butterflies! Plus a bird! And some more sunflowers!

More Butterflies!! – I know I’m predictable!! :)