I have come slightly late to the party, but the 21st of March was World Poetry Day.
Poetry can be a great tool for many people to express themselves, and as a lover of the written word I can see why. Not only that, poetry can help you release your creativity, send powerful messages that you may otherwise find difficult to say, and allow you to enter a zone of mindfulness where you focus your attention on one thing. All of which are great aids for people with chronic illness.
So, with this in mind I thought I would try my hand at a spot of poetry myself to celebrate (a rather belated) World Poetry Day.
I am going to put it out there straight away – I am no poet and I admire anyone who makes this seem easy because it really wasn’t. Even so I hope you enjoy xx
My poem is: To Those Who Knew Me Before.
You say I am not ill
Although I know I am
You say it’s in my head
Like it’s all one big scam
You are free, You can live
You don’t have to worry
I am forever changed
With this beast inside my body
Things have changed between us
no-one is to blame
We are on different paths
Nothing stays the same
You don’t get to judge me
Because you do not understand
This is chronic illness
This was never in my plan
Life is for me now
At a slower pace
With some days only managing
To just about wash my face
I am me, but I am not
A contradiction it may seem
I wish I could explain it
I wish it was a dream
I hope one day it changes
I hope one day I’m free
But even if it does
The scars of chronic illness will forever impact me
In celebration of St. Patrick’s day this week, I thought I would share with you one of my hobbies and one of my favourite places ever – art galleries or to be more specific the National Gallery of Ireland.
Before I start talking about the gallery itself, I have to tell you about my love for Ireland. Personally for me, Ireland is not only a place of beauty, a treasure chest of discoveries, but it is home to some of the friendliest people I have ever met.
The National Gallery of Ireland has a special place in my heart because it was the first gallery I had ever been to which actually made me fall in love with art. Living with multiple chronic illnesses I find it hard to switch off and truly relax and divulge myself in actual mindfulness, but the National Gallery made me do just that. It was the first place in the outside world to really make me stop and engage with something other than how unwell I felt, because let’s face it when you are out and about it is hard not to let the pain and fatigue consume you.
I have been to the gallery on three occasions – one of which was to see the Vermeer exhibition – and the most recent visit being after the revamp in 2017 which sadly I was unable to finish seeing all the way through due to time constraints. Unfortunately my health has taken a battering in the years since, but my goal is to go back and see EVERYTHING (although maybe over a few days – to make sure it isn’t too much for my body in one go!).
The Gallery Itself
The National Gallery of Ireland is in Dublin, and is home to Irish and European paintings and sculptures as well as paper prints, drawings, photographs and watercolours. It was founded in 1854 and has over 16,300 artworks.
My favourite pieces (the ones I have seen at some point) include:
Caravaggio – The Taking of Christ – This painting purely blew me away, so much so I have my own print copy. This painting is a depiction of when Judas betrays Christ, and the figure at the back is thought to be Caravaggio himself. I love the play of dark and light contrasts in this piece and the hidden meanings throughout.
Johannes Vermeer – Woman Writing a Letter, with her Maid – Vermeer is no doubt, one of my favourite artists and this was only confirmed in my visit to the Vermeer exhibition many moons ago. Again this painting exudes light focusing on the figures of the woman and her maid as well as discarded items on the floor. I love the mystery of this piece as you don’t know who the women is writing too, but can assume it is a love interest.
George Barret – View of Powerscourt Waterfall – It would be rather rude to talk about an Irish gallery and not mention an Irish artist and scene. This piece focuses on the natural scene of the tallest waterfall in Ireland and is truly beautiful. I love how the power of the waterfall jumps out at you through the trees, yet still makes for a peaceful scene.
Murillo – The Prodigal Son series – There is actually six paintings in this collection by Murillo which tells the story of the prodigal son. I love this idea of having separate paintings to tell one story and first discovered this on the gallery’s online exhibition. I also love the use of colour in Murillo’s work which I also enjoyed in his ‘The Holy Family’ piece.
James Arthur O’Connor – A Thunderstorm: The Frightened Wagoner – My final selection is of a thunderstorm scene which is packed with drama. One of my favourite things to examine in art is that of natural scenes and O’Connor has captured this magically. From the heavens opening to the bolt of lightening, the scared horses to the ferocious water under the bridge and the physical feeling that the trees are moving in front of your eyes – this piece catches nature in it’s rawness.
Accessibility in the Gallery
Although at the time of writing this the gallery is closed due to Covid – I thought it would be a great idea to share with you the levels of accessibility at the gallery in case you ever tempted to take a look yourself at some point.
The gallery has a wide range of resources available and has an excellent tool known as the accessibility map which outlines the provisions it makes for visitors with mobility issues, deaf or hard of hearing, blind or have low vision, and visitors with other disabilities. To view the map check out the gallery website.
For people unable to physically attend because of their chronic illnesses, the gallery has many resources online including podcasts, the online collection, online exhibitions and even pieces to practice mindfulness on.
I hope you enjoyed today’s hobby piece and it has been of interest to somebody somewhere. Either way I really enjoyed writing it because not everything is about illness and sometimes it is nice to remember that.
We have officially made it to the final instalment of the ‘Living with…’ series. Or so I thought… I have actually decided to turn this into a six part series, so as well as today’s living with M.E/CFS and the previous instalments of Tourette’s, PCOS, UCTD and Fibromyalgia, I have added living with mental health to the list.
So M.E/CFS – Myalgic Encephalopathy/Chronic Fatigue Syndrome according to the NHS website is a long-term illness with a wide range of symptoms – the most common being extreme tiredness. I personally wouldn’t describe this as extreme tiredness, I would more likely use the terms fatigue or exhaustion.
Other symptoms can include: post-exertional malaise, sleep problems, headaches, flu-like symptoms, sore throat, pain, feeling sick, dizziness and difficulty with concentrating, remembering and thinking to name a few.
Like with many chronic conditions people can experience symptoms at different levels of severity from mild to severe, and experience a whole host of different triggers and symptoms. The key point being whilst we may all be battling the same condition, our experiences and limitations will be varied.
When and how I got diagnosed
I was diagnosed with M.E/CFS around the age of 28. Like with my Fibromyalgia diagnosis I was originally dismissed by doctors as being ‘burned’ out from working in a highly stressful job role. I was constantly told I was stressed and that I was just tired, like most of the population. However the fatigue that was in my body and mind felt so much more than what the doctors were saying, I felt so weak and vacant and would spend time in my working day just lying on the desk unable to function. I would have whole weeks off and feel like it made no difference, until I had no choice, but to signed off for months on end. In the end I had no choice but to leave my job altogether.
I was actually diagnosed with M.E/CFS approximately a year – 18 months after my Fibro diagnosis. My M.E/CFS diagnosis was made by a neurologist and off the back of that I was sent to a chronic fatigue clinic.
What I find different with M.E/CFS
In comparison to my other conditions, I find there is more age diversity when it comes to M.E/CFS with people of all ages experiencing the condition. This does make it easier to find others in my age category who I can relate to – which has been difficult with some of my other conditions.
What I wish people knew about M.E/CFS
Probably what most of us wish other people knew – that M.E/CFS is so much more than being tired! Whilst I think in certain avenues especially in recent times, others are becoming more understanding, I think there is still work to be done to challenge this negative perception which can leave people in the community feeling misunderstood and side-lined.
The most difficult thing about living with M.E/CFS
In all honesty there are probably a number of things, I could list as difficult where M.E/CFS are concerned. However, the one that affects me the most at this stage in my life is the inability to plan for life. Out of all my symptoms from all my conditions, fatigue battles alongside one or two others for that top spot of being most difficult. Mainly because it is that one symptom which can fundamentally stop you in your tracks no matter how hard you try. You can have the best made plans, factor in your pacing, pull out your self-management tool kit, but if today is going to be that day of struggle, you don’t get a say.
Fatigue is the thing that stops me from working, socialising, leaving the house and at times being able to talk. It’s the condition you always have to factor in.
What has M.E/CFS taught me?
It has taught me that perfectionism isn’t everything. Once upon a time in my pre-illness days I would have to do everything to a tee. At work I would be the go-to when somebody wanted something doing and knowing it would be done to a high standard. Yet M.E/CFS has taught me these things don’t matter, putting myself under pressure doesn’t matter because when showering is a struggle you realise what is really important. The world doesn’t stop just because I do.
Here we have it my life with M.E/CFS – remember the series isn’t quite over as I will now be adding my mental health (anxiety/OCD) segment. To learn about my other conditions click on the links at the top of this post. xx
New instalment of the series now available: Click the condition to find out more – Mental Health.