Its been a while since i reported on the land of me- mainly because i will do anything to avoid being in front of a screen these days.
Speaking with my currently chronically ill younger sister a few days ago, I realised how my relationship with my laptop and the internet has significantly changed in the last few years. It used to be my life line and my voice- the only way i felt that i could be heard and a valuable functioning part of society. I relied heavily on my support groups and this space, my blog to feel like i was worth something and hadn’t just become a lost, forgotten statistic.
Back then i was in the depths of my chronic illness and the battles i fought in my mind were daily struggles, the like of which i don’t think anyone can understand unless they have been there. It is a cruel mistress that takes away freedom and living from previously active, smart, engaged men and women. It seems the more that i speak with others on this journey, the more the familiar pattern of previously super human like lives pre sickness appear. Some folk suggest that this is the bodies way of telling us to slow down and balance our lives better. It seems unnecessarily unkind to take away everything from us though, when we are playing our part in society and when others seem to drift through life unaffected by major trauma and with little compassion or empathy for others.
My sister, like i once was, is on a path where all of her life recently has been affected by an unknown and misunderstood set of symptoms. Work, Family, fun and adventures- the mainstays of most peoples lives, have felt like a distant memory for her as she is settling into her new, frustrating and absolutely miserable at times, normal. Fighting for care, diagnosis and help. Feeling like shes watching life going on without her. It breaks my heart to watch her feel the same range of emotions as i once did- failure, guilt, anger and absolute gut wrenching sadness at what feels like your life being over.
I listen and empathise as others once did with me. I explain the cycle of grief that is is oh so relevant with long term illnesses- upset, anger, fear, acceptance, denial. Upset, anger, fear, acceptance denial. My specialist once told me that this cycle will be a constant in my life, but what will happen is that the tough, dark segments, get shorter. He was right they have. I’m down to days, sometimes hours for the worst stages of anger, fear and upset now.
It used to be months.
It, all at once makes me feel deeply sad, yet incredibly happy that i can hear, empathise and provide a beacon of hope to her and others like her. I’m so grateful for where I am now and how far i have come. I never truly believed i could get here.
My life still can be a battle. I am not magically healed or anything like that. There was no miracle that unexpectedly changed the course of my life once more. Its all been about hard work and commitment to myself. Making sure that I advocate for myself with my health team and challenge medications and decisions. I manage my pain much better now with physio, exercise, mindfulness, diet and of course some drugs! But it has undoubtedly been a bit of luck too. My body readjusted to life without immunosupressants and regular steroids after a few years- for some, i know that just doesn’t happen. My mental health had been significantly improved by accessing the right support, doing the hard therapy and work, practising everyday, then surrounding myself with the right people.
I cant highlight this point enough.
I now live in a world of positive, creative, tenacious, hopeful and happy people, both in my personal and work life. Every single person is there for a reason- they understand, emphasise, support and enable me to be the best version of myself without judgement. There is no fear, only ‘how can i help you achieve that goal?’
Everyone accepts that i will try and sometimes fail.
I will do things i shouldn’t and pay the consequences.
And most importantly, they are OK with that.
I just got back from wild camping in the woods and hiking to achieve a goal i have wanted to do for many years. I’m often seen using walking sticks or simply unseen and bed bound over autumn and winter, so, as summer drew to close and after shielding for months, i really, really needed a big adventure to finish of my ‘good season’. We started by climbing the cheesewring on Bodmin moor. A test to see how i coped and if my youngest daughter who is 7 , almost 8 (but just as fierce and tenacious as her mother) could manage it. We were out for around 90 minutes and all was well. So after 2 days rest we packed up for the big one- hiking the two highest points in Cornwall, Rough Tor and Brown willy.
It took us 3 and half hours with a break at the highest peak (1,378 feet) for lunch and it was one of the hardest things i have ever done. There were all sorts of jolly folk practically skipping their way through, what was probably a normal afternoon for them, but for me this was insane. I was and still am in a fair bit of pain. Myself and little B kept repeating our positive mantras ‘ my legs are strong’ ‘i am strong’ ‘i can do this’ over as we hit the tricky parts. It felt like we kept going up and up, just to go all the way down again- it was rocky and there was a lot of scrambling about to be done.
I joined a movement called the yes tribe a few years back now- some of you may remember that i wrote a story as part of a book for them 2 years ago. The #sayyesmore movement and community have had my back every step of these challenges- they understand that we all have things that we need to overcome, we all have our own battles. Saying a positive and considered yes to things that bring you joy, will 100% make your life richer and happier than simply not trying at all, no matter what those battles are. I intermittently post about my mini adventures- I’m not likely to go trekking through the Amazon or sailing the pacific solo anytime soon, but i like to think that my version of adventuring despite all the challenges that go with it, is still valid and worthy of a good story.
The beautiful support they give when i share with them, is evidence enough that it is.
When we finally reached the summit, i felt a peace and satisfaction I’ve not felt for a while. I confess to not coping particularly well with lock down and shielding- it was (and still is) scary for us vulnerable folk and challenging with a young family, older kids that i can’t hug or support fully and a business to run. I needed this adventure so much.
I stood there and saw with my own eyes how far i had come, literally and metaphorically.
This year i published a second book, this time with my Dad.
I have spoken at conferences sandwiched between DEFRA and Mps.
I have been on the front pages for the work i do on plastic pollution.
I run a successful small business with my friend, recycling non recyclable marine litter into jewellery.
I flew through an endurance paddleboard race.
I have raised 6 wonderful, kind, empathetic, smart and passionate children, 4 into adulthood, successfully and despite a million hurdles.
I have a healthy, supportive relationship based on mutual respect and admiration with my BFG.
I paddleboarded around an island.
I ran my first ever mile.
I helped set up a successful and productive community in my home town.
I made a difference.
And I climbed 2 bloody big hills!
So, when i see the laptop now, I don’t see my whole life and reason to feel connected and valid anymore. The laptop is now my new work- saving my little piece of the planet. All this stuff is my life; its who i am- my health and disability is now just a small part of that.
I would never have believed it possible, but Everything has changed.
So, little sister and all of you still battling through the early stages of your journey.
Remember my story.
Remember there is always hope.
And never, ever give up.
*My adventure story in the book ‘ The Big Book of Yes’ and the book with my Dad ‘The Donnes: A Family of the Edge of British History’ are both avaliable on Amazon.co.uk
The community group i run Plastic Free Falmouth has great social media presence and a website if you want to see what we get up to.
Our business http://www.plasticoceanic.com always welcomes visits and support for our work to help keep cleaning the seas.
Feel free to come have a chat over on my facebook page kirstie edwards writer.