This collection of photos is 'My Photo Story' depicting the realness and often bleakness of living with a chronic illness, being bed bound the majority of the time and how suffering from severe M.E.(Myalgic Encephalomyelitis) and Chronic Fatigue Syndrome and long term & severe depression and Borderline Personality Disorder can affect and restrict one's life to such a degree and generally showing the light and shade; the dark times and the lighter times, which are simply titled with what each particular photo depicts in my world and a short description piecing 'My Photo Story' together.
For nearly nine years I've been a prisoner of this illness; this body; this bed. Lying here day after day being entirely controlled and restricted by this illness that people don't understand.
'View From My Bed'
Day after day this is the main view I see before me; this bed that confines me. Mostly every day, my entire day is lived right here: Eat. Sleep, Ablutions, Repeat...
'From A To B'
This is how I move when I'm able to: from bed to wheelchair; from bed to commode... from A to B! It's hard to comprehend how one piece of equipment can bear such significance.
'View Of My Bed'
From a different perspective- of which I rarely see as of late- things aren't really that much different at all. I then realise even more so, the bleakness of the reality of being confined to a bed.
'Getting Me Through The Day'
This is a very small portion of my neccessary daily medications. My medications are so immensely important to keep me going; prevent further problems / from me going back into hospital; various and ongoing symptoms and quite literally getting me through the day, I wouldn't be able to survive otherwise.
'A Big Step'
First day leaving the surroundings of my bedroom and the upstairs (other than being transferred to various ambulances). Having to travel via a through floor lift is always slightly disorientating, especially after such a prolonged period. A very big step for me.
'First Time Out'
To be constricted and confined to a house; a bed; a wheelchair is more difficult than one can express through words. Having the opportunity to get out even for 10 minutes was amazing- breathing in the fresh air; looking up to the night sky and feeling a relief inside.
'The Christmas Market'
The atmosphere; the rich smell of the hot chocolate with roasted chestnuts; the glimmering Christmas lights scattered all across the Cathedral Green and the general festivities and true spirit of a Christmas market is one Christmas tradition I'm grateful I could be a part of. To be there even very briefly was wonderful and warmingly joyous at that time of year and made me feel alive and genuinely festive inside.
'A Christmas Comfort'
Sitting there looking up at the magnificence of Exeter Cathedral at the Christmas Market, was incredibly meaningful for me and something I'm grateful I was able to do on that day. This is one of my favourite places to visit around where I live; its beauty astounds me from the inside and out and has been a place that has given me comfort in the past.
'Veins and Needles'
One of the most horrendous things about having a chronic illness since the age of 6, is having countless numbers of needles stabbed and poked all over my body. The amount of times I've looked down at an IV line in my hand, meds flowing through into my veins, it's something that never gets easier.
Looking up from my bed to the beautifully clear blue sky and seeing this plane flying by, makes me dream and ponder where it may be going. Envisioning myself there too; flying away to some tropical place or somewhere I've always dreamt of going to; Paris, Rome, America, New Zealand... getting lost in the excitement of a whole new culture and simply loving the freedom of being able to see beyond these four walls of my room and transporting myself to a whole new place and experiencing adventure in the truest sense of the word.
Looking out on a beautiful day; the sun shining, lovely blue skies; it's a nice thing to see. However, sadly depressing also, as I simply wish I was out there too, enjoying the weather and to just have fun and shoot, as it's always great to do so on days such as this. And even though the sun is shining bright outside, beyond my window...that light fails to leak into my room, as unfortunately only darkness seems to surround me in here right now.
This star is always something I love to gaze upon at the times when I'm simply just lying here, looking at the things that surround me in my room. As the wind sways the star back and forth and the rainbow of colours glisten in the light, it breaks the monotomy of the mostly uncolourful day.
This may look like a simple commode to most people, but to me this is a milestone and a big one at that. Being able to be hoisted out of my bed and on to this for the first time in 6 months is a great thing for me. But then being wheeled out of my room for the first time in a year is an even bigger milestone; seeing more to my surroundings than the four walls of my room makes this a massive thing for me to achieve today.
'First Trip Out'
After being completely bed bound for over a year and being confined to my room, I finally had my first trip out. Having fresh air on my face and that sense of normality back in my life felt truly amazing. This is from a lovely local cafe we went to. My first trip out was definitely the highlight of my year so far.
Getting out and going out to the Christmas market is something I've been looking forward to doing all year, so actually being well enough to go and enjoy the festivities meant so much to me. Even though it started raining quite a lot whilst we were out, to me it didn't matter, as it's very rare for me to feel the rain on my skin and the lovely fresh air, it's always those little things that we take for granted.
When I look back on any moment of being fortunate enough to get out, I appreciate it so much. This is an image I took on Christmas Eve whilst we strolled (or wheeled) into town, it was truly lovely enjoying the festivities and being able to enjoy the crisp fresh air. I appreciate those moments most especially after not being well enough to get outside for the past couple of months. We should all appreciate those small moments, you'll soon realise how significant they really are.
'My Spark In The Darkness'
This photo is extremely meaningful to me. As throughout everything, ever since I can remember, with all the hospital admissions and becoming very poorly; I've always held onto this hand with all the strength I had. This means so much to me, my Mum has been the person who's stuck by me during the toughest of times and continues to be my spark in the darkness.
'Brightened My Day'
Sometimes it can only take the smallest of things to change your day around. I was feeling pretty low and a bit lost as to what to do with my day. So, Mum brought me some lovely bluebells up out of the garden for me to photograph and it truly brightened my day; remember it can take only the slightest acts of kindness and thoughtfulness to affect somebody's day.
'The Night Sky'
After not being well enough to get out of my room for a couple of months, looking up at the night sky and breathing in the fresh, crisp air was wonderful. With the stars and moon shining bright in the sky I had my first attempt at night time photography and very much look forward to giving it another go next week and to keep experimenting with a whole new genre of photography. It was amazing just soaking in everything and truly appreciating that moment of being out.
'My Ray Of Sunshine'
This little one means the world to me and each and every day puts a smile on my face, no matter how low I might be feeling. It's truly wonderful how much joy Merlin has injected into my life throughout the toughest of times.
'Nothing Beats The Sunshine'
It feels like it's the first time I've been out in the sun for a very long time and it's certainly an amazing feeling. Breathing in the fresh air, sun shining, spending time with Mum outside for a change. It's just a shame that such a lovely outing gets overtaken with awful pain and fatigue each time.
'A Lovely Afternoon'
It was great to get out on such a lovely, sunny afternoon and visit my favourtie local cafe; the Apple Blossom Cafe. To enjoy that sense of normality of simply sitting, having a coffee with my Mum; made for a truly delightful way to spend the day.
Laying here in my bed, day after day, any glimpse of the outside world is always something that brightens my day. With being confined to my bed the majority of my time, my inspiration for creativity somewhat diminishes, so spotting any type of creative inspiration is always something I grab hold of.
Today was a great day; the first time I've been out in six months, was incredibly refreshing. Feeling the fresh air on my face, seeing the world around me; the lovely views from Newcourt, as well as the Christmas market, it was wonderful and really just what I needed right now.
'Cold, grey day; but it was worth it!'
It's always amazing to get out of the house in my wheelchair, to enjoy the fresh air and general normal everyday life, that is all so often taken for granted. The only downside is the awful agony and tears I'm in whilst being out and the repercussions afterwards. Despite all the anxiety and pain, I push myself to focus on the positive side of getting out in to the world and enjoying a trip out, as it was definitely still worth it in the end.
'The Light and Shade'
I managed to get out yesterday, it's been three weeks since I've last been able to be hoisted out of bed. So it was definitely lovely to get out in the fresh air, start a new photography project with an awesome local business and genuinely connect with them as well, which is always a plus. Then had a nice coffee at The PictureHouse Cafe; the Beauty & The Beast art was brilliant. Seeing the bright art on the window and then the juxtaposition between the dreary looking perspective of outside is a perfect comparison to my day. Despite the awesomeness of getting out; I was in agony, feeling faint and generally pretty rough all ways round. Remember there's always the light and shade to chronic illness, that's just the way it is unfortunately and people need to be as equally aware of both sides and it's so essential for us chronic illness sufferers to portray and show that as best we can.
'A Splash of Colour In My Day'
It's now been 6 weeks since I was well enough to get out of bed and out of the house, it's been tough feeling even more unwell than I do anyway. So I've been trying to focus my mind on other things, like the new business and photography; I always love when Mum brings new flowers in for me to photograph. I just hope it won't be too long before I can get out again, as I miss the sunshine and the fresh air.
'A Spark of Hope'
It's now been 6 months since I last got out of bed, so it's definitely been a tough time to say the least. I'm so keen to get out and feel the fresh air on my skin again and just generally see the outside world, instead of the four walls of my room. I'm hoping that in a couple of weeks I'll be able to get out of the house and start a new photography project that I've been planning for a while. It'll simply be amazing to get out again and work on something that I've been hoping and dreaming to do for months. At the end of the day, no matter how chaotic and painful your situation may be, it's all about keeping that hope alive; even if it's only the slightest spark.