We will all have challenges in life, sometimes they will take us by complete surprise, when other times we can feel them creeping up slowly so we can prepare ourselves to the best of our ability. We all deal with life challenges differently. I admire people who show strength during the hard times but also their vulnerability, we are all just human after all. Art is about connection, awareness and provoking emotion, the ‘shape of us’ feels like my way too ‘give back’. I love doing these type of blogs because I feel it gives me more of a purpose and we all want to be useful right! I’m also sure people will be happy to know this one isn’t about myself… yep, I’m taking a little down time from my self portraits while I work on a few other projects and catch up on editing. So for this blog entry i’m spreading some awareness for MS (multiple sclerosis) through images and the help of Ceri, who is a MS warrior and has kindly opened up about her strength and struggles while living with her condition.
To start our shoot we took some quick photos in Ceri’s family home, which I may add was decorated amazingly with quirky wallpaper showing the vibrant personalities of the family. I wanted to capture the day to day of MS, so I asked Ceri to just act as if I wasn’t there and do some tasks (haha I know a bit weird right!…) Ceri decided to wash up and relax with her dog as she would normally as I snapped away. Ceri uses a chair aid and stick to help support herself as she goes about her day-to-day tasks.
I also wanted to show Ceri as a mother, happy and positive. I’ve known Ceri for some time, I’ve photographed her family on and off over the years. We follow each other on social media and have connections through family members. I’ve always known that Ceri has MS, however admittedly I know nothing about the condition. So when we decided that spreading some awareness through my blog was a good idea I wanted to make sure I did it justice, but also that It was a true representation to Ceri personal experience and not a doom and gloom blog… (because if you are a regular reader, you know me right…)
Multiple Sclerosis (MS) is a lifelong condition that affects the brain and nerves, it is caused by the immune system mistakenly attacking the brain and nerves. MS can’t be cured but there are treatments that can be helpful, to find out more about MS visit this website https://www.mssociety.org.uk
I just really wanted to capture some fun, natural photos while also highlighting the challenges of every day life for Ceri and as they live close to the groves I decided to join them on a dog walk. Her boys are beautifully energetic and mischievous as happy children should be. They excitedly talked about superheroes and pirate treasures as they rushed putting their shoes on ready to go on a walk with their mother and lovely little dog, it was the last day of the summer holidays and there is definitely a slight hint of autumn in the air now! I decided the best way to get photos would be to hang back slightly and just document what was happening, so that the photos represented their family dynamic in an authentic way without me over directing.
I asked Ceri a few questions, below is Ceri’s experience of MS in her own words-
Multiple Sclerosis is also known as snowflake disease there are so many different symptoms and ways it can affects you that no two people are ever affected the same.
I was diagnosed with relapsing remitting multiple sclerosis at the age of 23. My symptoms started as pins and needles in my left leg followed by nerve pain in my hands so bad I would itch them till they bled. I woke up one day thinking I’d had a stroke as I couldn’t move the left hand side of my body, I went to the doctors who referred me to the hospital and within three months I had an MRI scan and a lumbar puncture to confirm a diagnosis of Multiple Sclerosis.
I’m 40 now and my condition has deteriorated which is expected with a degenerative condition, I now have secondary progressive MS as well as relapsing remitting which means that I will no longer recover 100% after a relapse. After being diagnosed I went onto get married to my husband Alan and have two beautiful young boys Henry and Charlie. I’ve never given up on my dreams, but I needed to change my approach to achieve them.
One of the most challenging things I find is acceptance and fatigue. I’m quite a stubborn person and felt when I left the consultants office after being diagnosed that I could beat my MS. It’s taken me a long time to realise MS isn’t something to be beaten, it’s something to be embraced. It’s about the long game. My choices have changed, they are no longer ‘should I walk with a stick’ they are now what disability aid will help me the best.
My fatigue affects me daily and I have had to learn that sometimes a couple of hours in bed means that I have enough energy to greet my boys after school. Or a quiet coffee sitting on my own is the Headspace that I need. I have a cockapoo called poppy who really is my therapy dog. On the days that I feel unable to do anything she sits with me and she knows my mood so she is more patient when we go on walks.
I had MS before I had my boys, so I don't know what motherhood is like without the condition. And we adapt as best as we can, we are open with them, they call my MS my alphabets. I watch my boys grow, sometimes I have to be on the sideline and can’t be teaching them or doing the physical activities that I wish I had the energy to do.
MS is known to affect mental health and my mood is also something I’ve struggled with over the years. The cognitive issues that I face on a daily basis are unbearable sometimes. Yes you can adapt but you still feel life is unfair. I have started a bullet journal which I find a really good release and tool that keeps me organised with my daily tasks. I craft as a hobby to take my mind off what I can no longer do and focus on what I can.
I would like to beat the stigma of disability in young people. I’m often questioned for using a disabled toilet, stared at for using the disabled parking space, and asked rather bluntly why I have a stick and two young children. If I could say anything to anyone it would be disability has no age limit, has no preference to your lifestyle, your past, your dreams. If you are struggling with the diagnosis or looking for support there are great communities out there.
Life isn’t all bad we adapt and we change our lives to the way that they have to be. I’ve learnt to embrace the little things, that big or small achievements are still achievements. And I live by the mantra “live for the good days, get through the bad ones“.
Other helpful links-
Follow Ceri's Journey on Instagram
This was a lovely collaborations, thank you Ceri. I really appreciate the way you opened up about your MS and let me capture these images of you and your family, your strength and honesty is admirable and you are a great roll-model to your community.
Thanks for reading... sorry for the typos!
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I really like blogging, It feels very 'me' and it's great to do something we love right!? I've wanted to do this style of work for years but I really wasn't ready to open up about my art work as I am now.
I'm really finding my voice and this has given me a deeper reason for creating! However having my own voice doesn't feel like enough. We all have stories and struggles that are all different. Art for me is about connection, awareness and story telling, and I believe that together there is so much awareness to be spread.
Sound like something you may be interested in? Great! Let’s tell some stories together!
Email me:blog@velvetimagebrecon.com
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