I was diagnosed with Ankylosing Spondylitis in 2014 and since then life has been a rollercoaster. There have been positives as well as negatives. Ankylosing Spondylitis (AS) has changed me mentally as well as physically. I was then diagnosed with Osteoarthritis and Fibromyalgia in 2017. Over the years I have found the best help ever was talking to other Spoonies like me so I wanted to share my experiences to help others. Any advice I share are personal experiences. I've never blogged before, this is a place where I can clear my thoughts but hopefully it will help you too.
So I have finally decided what to do to raise awareness of Ankylosing Spondylitis money for the National Ankylosing Spondylitis Society (NASS) but I must have had an insane moment. As I have mentioned in previous posts, for several years I have suffered from really bad anxiety. It took over and destroyed me to the point of not understanding anything when I was diagnosed with AS. I was to busy being relieved that I would not need to have an MRI, I was terrified of enclosed spaces.
I’m raising money for NASS because they have helped me so much since I was diagnosed nearly six years ago. I joined one of their groups for hydrotherapy and physio sessions. I knew I could call whenever I needed advice. They have also helped me during a very upsetting time at work. I have seen what this charity does first hand.
The past few years, things have been getting a little better thanks to medication, CBT therapy and hypnotherapy. I think the thing that has made me the stronger and more determined to fight was the death of my grandfather. That might sound strange but he always gave me strength and encouragement. Nine months later his wife, my grandmother also passed away. The two most important people in my life after my parents had gone. After my grandmothers death and ongoing work related stress I started spiralling downhill again but I am starting to pick myself back up slowly.
So in a moment of feeling extremely motivated and happiness I saw an advertisement to climb the O2 arena in London. Its an amazing structure, 52 meters high which apparently represents each week of the year and 365 meters in circumference. I have actually never seen it close up but it is huge.
So after a quick chat with a friend who supprisingly also wants to climb this tent like structure I booked two spaces for us to climb in September, so only for weeks to panic, “What the hell have I done?” so watch this blog, I will post a follow up after the event if I survive but it would be great to get some sponsorship please click here to sponsor me.
A wonderful inspiration at last night’s Oscars. You don’t see Selma MS sufferor who in her words is currently in a flare, but a beautiful lady with a walking stick which could just be a prop if you didn’t know her story.
Yesterday was an emotional day, it would have been grandads birthday. He passed away 9 months ago so still grieving but his wife of 70 years, my grandmother, passed away last week. I hope they are together now.
I went to see the fatigue specialist physio and I got emotional telling her I now have weakness in arm muscles aswell as my legs and I’m so scared of becoming bed bound as I’m feeling like what’s the point…..It was the first time I said it out load and it was infront of my father. I don’t like being so open infront of my parents. I only have to hold something light for a few seconds & arm muscles hurt.
Today I have no energy to get out of bed, I’m exhausted by yesterdays trip to the hospital in London. This #chronicfatigue is draining me more then my pain which thankfully is mild at the moment. I don’t want to get up or wash or dress or eat. I’ve had so many pyjama days past few weeks which is just not me! Dealing with the grief of the passing of my gran onto of being ill and exhausted was just too much to handle?
Does anyone have any tips to share especially if you’re also in employment?
So why am I talking to you about Mexican artist First Kahlo? Yes you know, the one who paints self portraits with thorns around her neck and spine made of metal. The one with the unibrow and moustache? I’d say one of the most famous female artists who pushed the boundaries. Well I studied Art and I thought I knew enough about her until I recently went to see an amazing exhibition at The V&A gallery in London called Frida Kahlo: Making Her Self. It was an exhibition of her personal artifacts and clothing rather then her paintings and I walked out feeling very inspired.
She lived a lifetime of pain both mentally and physically. It is believed her disability stemmed from being born with spina bifida, a congenital condition that could have affected both spinal and leg development. She also developed childhood Polio at age six leaving her with a “peg leg” which she had to have amputated in 1953, a year before her death. At eighteen, a bus accident left her with serious injuries, lifelong pain and medical issues. It was a miracle she survived. I knew from my art books that she had been in a terrible accident when she was a teenager but I never realised about her childhood illnesses and the extent of her disabilities. She seem determined to overcome these challenges and now, so am I! Frida Kahlo is my muse, I am my muse!
We all know how difficult it is to stay positive, to see a bright future. All I could see in my future was being in a wheelchair and on my own and the depression followed. How did she cope? Maybe her paintings helped her release that pain. I still have those negative thinking days, don’t get me wrong, but I try to see my disabilities as an opportunity to help others and to raise awareness. I’m not saying she’s my hero because she’s in so much pain like me I don’t actually know what it is, her love for her country, her strong political beliefs, her courage or the way she expresses the suffering in her art.
Frida died in 1954 and in 2004 it was discovered that her husband Diego Rivera had two rooms in their home filled with her personal possessions, documents, photos, her diaries, drawings, books, nail varnish, lipstick, outfits, hospital gowns, painkiller boxes, orthopedic corsets, you name it. He wanted to preserve their love. Thanks to this love, we were able to see this hidden side to her at this amazing exhibition. So why the inspiration? Well apart from the fact she was lucky to be alive after the horrific bus accident, she had to learn to deal with her disabilities from a young age. She hid her limp leg layering up with thick socks and boots. It’s obvious now all the beautiful traditional Mexican clothing and jewellery she wore was actually to hide her broken body. I think it’s interesting how she would dress to hide her scars and disabilities and yet in her paintings she showed everything. She showed all her pain and in quite a graphic way. When she had her leg amputated she decorated her orthotic foot which I saw at the V&A exhibition and it was amazing. A red boot decorated by Frida with Chinese embroidery thread and little birds. The exhibition also shows the corsets she decorated which covered her broken spine, you can see in the photo below how she painted the corset.
She did a lot of the painting whilst in bed. Her bed I’ve been fixed with a large mirror above her so she could see what she was painting evil on a canvas or on corsets. Being bedridden for so long after her accident and her childhood illnesses she kept busy drawing and painting this way. I guess when you see nothing around you but your room and reflection of your broken body what else can you paint?
She’s also good example of what we are all now trying to teach others, that ‘Not all disabilities are visible’ and that looks are deceiving. She looks healthy, she looks fine, isn’t that what they say about us? ‘You don’t look ill’ or ‘You don’t look disabled’. I read she hid her injuries with this type of clothing when she met Diego but then why did she hide herself after? Why did she paint herself so graphically? I wish I could find her strength. I don’t even have the mental strength to share my pain by writing this blog. It’s not even due to the physical pain or mental strain but it’s the chronic fatigue, the brain fog just drains my creativity as well as my energy. I wish I could draw or paint what I’m feeling inside. I’m an artist but I draw portraits so not things for imagination. Maybe that should be my goal for this year? See Frida Kahlo is my muse. She’s making me want to try new things. I want to come out of my comfort zone and let go. If Jackson Pollock can express himself splashing paint on an enormous canvas why should I be afraid if what I draw can’t be understood in the way I intend? Who cares? Art is all about being free expressing yourself, what you feel inside.
So what do I show on the outside compared to how I feel on the inside? Several people have said they admire me for just getting on with life. Working like I always have done. Not using my disabilities as an excuse to get out of doing a job because I don’t want to do it. I apparently look well, it’s not what I see when I look in the mirror, it’s definitely not what I feel inside. I’m being strong but I’m not as strong as I look, I’ve just done a good job of pushing those feeling so deep down into the darkness. I’ve convinced myself that my goal is to help others. Why? Because it makes me feel good? It makes me feel like there is a point to all this crap that’s been thrown at me? I do feel good helping others but I can’t use it as a distraction to forget what’s happening to me. I am mentally stronger then I have ever been but I’m still always thinking at the back of my mind ‘What is going to be fired at me next?’
It’s never too late, Ankylosing Spondylitis was the end for me then Fibromyalgia and Osteoarthritis too and that was it but now I’m seeing things differently. There is no deadline for following your dreams. Not age, not sex and definitely not our disability.
I was talking to a friend the other day and thinking back to this past year. Lots has happened, good and bad but I am in charge not my disabilities. I have lots to share but unfortunately have not had much time recently to write.
2019 will be another challenge I’m sure for all of us…….. but let’s take control!
For once I really don’t know what I want, apart from a new body, but what’s the point in wishing for that, the new one might be worse then the current model.
Joking aside would I wish for a new model…..no! All I want is to be thinner and pain free surely Santa can provide that?
Well guess what? He didn’t and now it’s 2019 and not much looks different!
My new years resolution is the same as last years which was the first year I bothered. New years always feels depressing to me as each year is like the last but I put my Miss Positivity hat on last year and decided this year I would make things different, I would do more to support charities and raise awareness for Ankylosing Spondylitis & invisible disabilities. I also hope to find my time for my blog even if they are short posts like this one.
Wishing you all a Happy New Year 🥂 let’s hope we have a less painful 2019.