My journey with art and illness have been intertwined.
Actually, everything in life has been intertwined with my illnesses because it affects everything so that’s a silly thing to say, but art has been in a different way.
With everything else, things have had to suffer. .
When I look at my past with art I see my illnesses in a positive light. If I never became ill in 2014 I wouldn’t have found art as a passion. I was housebound for four months that year and art saved me from boredom. My illness that year stopped me from getting to university to study what I wanted to back then- I can’t even remember? Animal biology I think? And instead I decided to do a HND in contemporary art practice where I honestly felt so at home.
Then when I became worse in 2016, I wouldn’t have found my style or my subject. There was a long time where I wasn’t able to create much art, but through it all my style was still developing. I was changing, growing and feeling and all of that shows in my artwork now.
After getting my iPad Pro I have been creating a lot more artwork again. I’m finally able to put my ideas from the last four years down into creations. I’m finally able to express myself fully and tell the world my story through art.
This artwork is leading me places and I’m really excited for what’s to come. A week today, I will be flying out to Milan in Italy to exhibit my artwork in an incredible art exhibition/competition 🤩 🎉 I cant believe it! .
This probably wouldn’t have happened if I never got ill in the first place... so today I’m feeling grateful, for the good and the bad 💓 .
Chronic illness has this weird power to warp time ⏰ 🧙♀️ .
Sometimes the past 4 years that I’ve been ill seem very short, probably because not much has changed for me since I became ill, sort of like life has just paused.
Other times it feels like I’ve been ill for an eternity and I struggle to remember the days where I wasn’t. .
On the bad symptoms days (weeks or months!) I seem to forget all the better days I’ve had. It starts to feel like life has always been this way and always will be this way. It doesn’t just feel like a day in bed, it accumulates in my mind and feels like I’ve been laying there for 4 years. Even though I haven’t; I’ve had couch days, I’ve had days in other homes, I’ve even had some day trips in the midst of all these bed days. .
Oppositely though, but perhaps with the same mind tricks... when I have a better day, the bad just melts away. They disappear, and I feel light and free just for a little while.
Just like when I’m worse I forget the good, when I’m good I forget the bad. .
So here’s what I think recovery will be like;
When the good times really start, the bad will just disappear. It will melt away leaving behind just the knowledge and wisdom it taught. This whole emotional journey will be a faint memory like looking back at a somebody else’s past. The weight of those years will lift off my shoulders and the burden will no longer be there. 🌦💫🌷💕
I have a personalised 10,000 piece jigsaw.
Everyday without it my body attacks
Throwing fireballs into my legs
and lava into my lungs.
An army thuds the walls of my head
and a mountain is stuck in my throat.
The wolf in my stomach growls and bites
My insides hurt.
Whenever I stand mist covers my eyes
My balance is taken, I drop to the ground.
I need help.
but nobody comes, no answer is given.
Just a 10,000 piece jigsaw all in my head.
My happiness depends on the completion.
The problem is, all the pieces are missing.
They could be anywhere in the world
from beside my bed to Australia
I don't know- they may even be on Mars.
When I find a piece I can't always tell if it fits into my jigsaw..
as the linking piece might still be missing.
So I blindly search for pieces in every corner of the world
Hoping to come across one.
I try to add it to my jigsaw, hoping it will make the picture clearer.
I search again, but some of the pieces are so far
I can't go
I'm too sick.
How can I get there if I can't even walk.
Some of the pieces contradict each other.
How do I subtract when this piece says to add
It doesn't make sense
I feel lost
I don't even know if I can find every piece
What if ones 10 feet under the sea
and ones away up on Mars.
I don't even know if it's possible.
I keep going but I'm worried.
There's nothing else to do
this jigsaw is all I have.
To complete it would be everything
It would be the end of all evil
The end of pain
the end to this cruel journey
and it would be the start of a new jigsaw
One full of hope and dreams
Smiles and laughter
The jigsaw of life that I so desperately seek.
Lately I have been reminiscing when I first became sick. I remembered something I had completely forgotten about, I thought I had anxiety!
I wonder how many people today think they have anxiety, when they are actually physically sick?
You see, my first "POTs attack" lets call them - when my heart beats really fast and it's terrifying- was when I was horse riding. I had not long been back on my horse after my head injury (from falling from my horse) so I thought it wasn't a shock I'm having panic attacks now. But months and months passed, and I just didn't feel scared when I was riding, in fact I felt way more confident than ever. So what was going on? I went to the doctors and she thought maybe asthma, so I tried an inhaler and nope that didn't help in the slightest. I sort of went on, still horse riding almost every day, still going to competitions and lessons. I just sort of learned to live with it, so I'd be at a show jumping competition and I'd complete my round, have a lot of fun then I'd rush out of the arena after, jump off the horse as fast as I could. Just ditching her on my Mum so I could sit on the floor or lean on a fence because I was absolutely exhausted. Felt like I could just faint off the side of the horse if I stayed on any longer.
A few months later, after sort of just dealing with these symptoms. I started getting these episodes more often, I noticed when I was working in the tearoom I'd have to lean on the table every so often for just a couple of minutes because my heart was fast. Then in maybe November time in 2015 I'd walk into college for 9am and my heart would be going so incredibly fast, it felt like it was beating out my chest. I got an overwhelming feeling of fear, sadness and panic making the episode get worse and worse until I broke down crying. This happened almost every day going into my class room, so I told my doctor who agreed it could be anxiety.
I got a letter through the post with an appointment to see a therapist, the letter titled "Beating the blues". And I thought straight away, stuff that I haven't got any blues, I'm not going there.
What a rubbish name for a therapist centre? what a way to make people feel like there's something wrong with them.. like they aren't normal. I wonder how many other people thought "absolutely not" as soon as they read the name of the facility.
I just knew it wasn't right.. mentally I felt fine? but the symptoms mimicked anxiety completely, doctors wouldn't believe it wasn't.
I continued to just push through the symptoms, Christmas and new year passed and it came to the first week starting back at college in 2016.
I can't remember the week very well but my main memory is the feeling of not being able to sit on a chair. I felt like gravity was pulling me down, not like anything I had ever felt in my life. What I would imagine slime to feel like, spreading and sliding off any surface. I just didn't feel safe, even though I was sitting on a chair with a high back and arm rests and was completely safe. I remember saying to my friend, I feel like I'm falling off this, I can't sit here. I felt truly awful, like this constantly... but even lying flat on my bed I felt like I was falling, the room was spinning and I could drift off at any second and be completely taken away.
This could not be anxiety.
Have you ever felt like you could just be slipping away? Have you ever laid in bed at night with your heart fluttering so fast, you think to yourself "maybe I will die tonight".
That's what it feels like to have an undiagnosed condition that affects your heart. The symptoms are so severe, you think you it must be life threatening.
Yesterday was a difficult day, I felt awful, was really let down by my Doctors and I honestly wept all day. I felt like all of my hope got sucked out of me and I had no answers, no treatment options and was being left to rot. Going to the doctors always drains me... I can go for months feeling pretty positive about my future and my situation, then I walk into the doctors office and I feel like a small child laying all of my emotions out on the table and placing my future in this persons hands.
I don't blame the doctors because my illnesses aren't well known, therefore there isn't many options for them to help us. All they can really do is listen, and let us down gently about the lack of options. They say things like; "I'm afraid sometimes we never get to the bottom of these things" and "You might grow out of it", which trust me are not comforting words when you have been sick for years.
Now who is going to change this? It's not just me, there is millions of us suffering behind closed doors. I feel we are a forgotten or ignored community. On Instagram we have a whole world, there are loads of us, all working together to get answers, to improve. All striving for the same thing- Health.
When we are online, we are an army. We are important, we are known and we are cared for. In the real world, nobody knows we are struggling.
How can there be so many of us, yet our illnesses are still a mystery. We still have to FIGHT to be believed.
So who is this up to? Who is going to fight for us, if not us?
It is up to us.
We need to get our illnesses recognised, we need people to know they hurt.
We need people to hear our screams, watch us struggle
So that one day people like us will go to the doctors, they will know what's wrong, know what to do and perhaps even have an answer.
If you feel like you have lost your personality due to draining sickness, this is for you.
Do you feel like you're too exhausted to behave like yourself?
You don't go into silly dances or make jokes anymore?
You don't have the fun, upbeat personality you used to?
Your emotions have changed, and it doesn't feel like you?
You look in the mirror, and you don't recognise the person staring back at you?
I felt like that too,
and do not worry.
You WILL come back to yourself.
There will be a time in your recovery where you suddenly don't feel so drained, you won't feel so exhausted. You'll naturally come back to yourself, all of your quirks, the silly movements you do. Your jokes and the way you giggle.
and you know what? You will love it. You will love yourself so much more for it, so much more than you did before. You will appreciate yourself and who you are.
Maybe you have to lose yourself before you can really love yourself.
Be kind to yourself, and keep looking forward
Did you know how some Doctors judge our every move?
We can't slouch on a chair because they will notice and assume we are lazy.
We can't be a little bit quiet as they will take it as not caring.
We can't cry in an appointment or we have depression and that's what's causing our symptoms.
We can't get anxious trying to describe our symptoms or they are just anxiety.
We can't act positive or we are coping fine, so it isn't that bad.
We can't use a wheelchair because that is "alarming" and will make us deconditioned.
We can't stay in bed or at home or we aren't trying to push ourselves.
But we can't push ourselves and manage because that means we aren't as sick as we say we are.
We can't find conditions to explain our symptoms, or we are finding conditions and making up symptoms to fit.
We can't manage an exercise program or we aren't that sick
We can't not manage one or we aren't trying hard enough.
Why do doctors not believe us? Why do they make assumptions instead of asking?
This doesn't help. You don't know me.
You don't know that I commit to helping my body every single day by eating well, sleeping well, trying to exercise, to get fresh air, to get nutrients into my body.
You don't know how hard I try to keep a positive mindset, to put myself before everything so one day I can hopefully be the picture of health.
You don't see me on the days I can't move my head without balling my eyes out because it hurts so much.
You don't feel how my bones hurt while typing this.
You can't see through my blurry eyes.
You can't feel the gravity pulling me down.
You don't see me sleeping on the sofa.
You can't hear me cry when all of my symptoms are too much.
You don't see me running to the toilet thinking I'm about to be sick
You can't see me gagging whilst trying to eat and drink.
You have never seen me too exhausted to talk
You haven't watched me when my vision and hearing goes and I dive to the ground fearfully.
How can you judge me?
You don't see me almost killing myself trying to push through the symptoms then crashing so hard I can't move from the house for months.
Why are you telling me to do this?
You don't see me when I try to be with my friends and afterwards my boyfriend has to undress me because I literally don't have the energy to move one arm.
You haven't seen me burst into tears while trying to brush my hair or how I break down in the shower.
You don't see all the money leaving my bank account for all things to do with recovery - My recovery programme, my nutrient products, my protein shakes, my healthy eating recipe books, my acupuncture, my massages, my compression stockings, my bandages and supports, my reclined exercise bike, intolerance testing, the list goes on and on...
You don't see how my mind is running around trying to find relief.
My health issues were always creeping in the background, through my childhood bone pain and headaches were common for me. I had a weaker immune system that always seemed to struggle to beat viruses, and I was just generally a tired, allergy ridden, run down child. When I reached high school my bowel issues started and by age 15 became quite severe, both diarrhoea and constipation along with pain that was often intolerable were a daily occurrence. I got diagnosed with irritable bowel syndrome after going through various tests at hospitals. I tried exclusion diets and was on the low fodmap diet for months but nothing ever seemed to help. I suffered fatigue and generally felt rubbish a lot of the time. Insomnia came at me in waves where sometimes I couldn't sleep for weeks. The extent of how sick I was wasn't really noticed to me until I looked back at my medical records and saw how often I complained of these reoccurring symptoms. I guess I knew I was ill, I just didn't piece everything together to see the whole picture.
A few years later, at 17 I was wiped out completely by glandular fever. I was bed-bound for I think 4 months and now looking back with hindsight, my symptoms were very like Postural orthostatic tachycardia syndrome (POTS)- dizziness, extreme fatigue and pre-syncope. Perhaps I had glandular fever prior to this and what I was feeling was POTS starting (much earlier than I initially thought!). The rest of the year was difficult, I picked up multiple infections and later on in the year I had a bad concussion. I fell from my horse at a gallop and smacked my head off the ground. For that night I lost all my memory of the two years before and I was unable to retain new memories. Thankfully, by the morning my memory mostly came back and my short term memory was fine. I remained confused for a long time afterwards and I do to this day feel like my memory has been affected, I seem to have forgotten a lot that happened in my teenage years.
Throughout the next year, I had pre-syncope (pre fainting symptoms where vision goes) and tachycardia doing things, for example when I was horse riding or while I was working in the tearoom. These were put down to anxiety for quite a long time, although I knew deep down this just wasn't right. I also still had the symptoms I had before- fatigue, headaches, bone pain, hot flushes, insomnia, allergies. I happened to get sick around any occasion, for example, if I went away for a couple nights I ended up in the hotel room sick instead of enjoying myself, or on occasions like my birthday and Christmas I would always be ill with what I thought were viruses. I knew I was fading away and becoming more sick, I felt it coming because I was just sick so often, it wasn't normal. I was also turning into a cry baby, I started crying randomly most days, and I wasn't myself at all. I made a few changes to try to combat this, I was eating better and having super-food smoothies daily. I was trying to exercise to get into better shape physically but of course this was the wrong thing to be doing when unknowingly to me I actually had exercise intolerance.
In January 2016 when I was 19, I crashed. my body just hit a wall. It physically could not take anymore. That week I tried to drag myself to college, but my heart was beating out of my chest and I couldn't even sit on a chair. Gravity was pulling me down and I felt like I wasn't in control of my body. I was falling all over the place and I felt really unsafe know matter what I did. I think after a few days of really trying to push through these horrible symptoms, I could not move anymore. I physically couldn't get out of bed. These next months are such a blur, I slept most of the time, stared at the walls and sometimes stared emotionless at the television not actually taking anything in. I crawled to the bathroom and every few days or once a week, forced myself into the shower where I continuously collapsed on the floor crying, too exhausted to wash or to then leave. This was rock bottom for me, I don't like to dwell on it too much, but I think it is important to show my story. To show how bad it is, to show others they aren't alone in this.
I do feel like my memory during this time is fogged over. I remember moments, but it feels like there is a lot missing. I remember suffering with insomnia at nights, even though I was exhausted and honestly feeling like hell, I just couldn't sleep. I'd lay in bed, feeling like my whole body was jittering. My heart beating out of my chest, my pulses all over my body pulsating so incredibly strong I could feel it in my fingertips, my neck, my ankles, my belly. I could hear every heart beat in my ears. It's the most unsettling feeling I've ever had, one that feels so strange and so severe. I lay awake wondering if I was close to death. What was happening? My head would hurt and I felt sick, the room spinning round and I'd feel like I was falling down, a dropping sensation throughout my whole body. My body felt like tonne weights and at the same time my bones felt like they were being crushed. I lay awake, yet barely conscious staring at the wall with tears running down my cheeks. Whenever I had the energy to think a bit more, I'd feel my heart breaking inside my chest as I grieved the person I was before I felt this way. Eventually I'd fall asleep, often around 4am.
I'm sitting here typing this, and I'm unsure what to say next. I can't work out what my days went like, I slept for most of them, and when I wasn't sleeping I feel like I was barely even conscious, just this body sitting and eyes staring but I wasn't really in there. I was brought my meals by family members and I'd eat laying down just propped up slightly on pillows. The bowl would sit almost at my face and lifting my hand up to my mouth felt like a workout and became virtually impossible after eating a small amount. After a few months of this being my lifestyle, I built up to getting down the stairs, and onto the sofa for an hour or so. This felt like such a massive step forward, and it was but it was still such an incredibly hard time. I still crawled down the stairs most days, often getting stuck half way and feeling like I couldn't possibly go any further. My head would be agony when I moved an inch and when I stood up my vision, hearing and balance would disappear and I would drop to the floor in order for it to come back. I honestly felt life was impossible, every single thing I did would exhaust me and make my symptoms so much worse. Caring for myself was absolutely not on the cards and life was hard. I had almost 40 severe, crippling symptoms every single day.
I wish the symptoms were the worst of it, but honestly the emotions were. People who aren't sick like that don't understand, "You don't get it, until you get it". When you get sick, there is a grieving process that happens. I lost a lot, my whole life before was gone, who I was before was gone. There's so much worry and fear. Fear of the symptoms, fear of whats wrong with you, fear of not getting better. Worry about the future, it feels so uncertain when you're ill. Anger, so much anger and frustration. That was one of the things I struggled with most, how do you get your anger out when you're that sick? it just builds and builds and builds and that is torture. I have never felt desperation like I have due to illness. Desperate to just feel better, I have never wanted something so much in my life and no matter what you do, short term there's no fix. Every negative emotion you could think of is felt in that state of illness, jealousy, sadness, hopelessness, guilt, loneliness, and they are all absolutely valid.
My healing journey- pending