The Story Behind The Story….
It was just another day of looking after my young son. We sat on an armchair in the kitchen looking out into the garden. I sat because I had too. Every day I had to sit or sleep or rest while trying to look after my son. This was because following a car accident and other variables I had developed CFS/M.E/Fibromyalgia and during this time I could only manage a few hours activity a day. So we spent a lot of time creating stories, adventures and games from the comfort of a bed or a chair.
"Let's make up a story", I said. And so here the story of Little Boy and Cat was born.
Through these challenging years I experienced my own mental & physical wellbeing diminishing and worked a lot with therapists, mindfulness, CBT, Mind & Body Connection work and physical therapy.
Preluding this I worked as a Music Workshop Educator mainly with teens and projects for behavioural, emotional mental heath and wellbeing using music as a creative tool. The same narrative would keep repeating; "we need help, where can we get help? It's too long to wait." I witnessed many young people's mental health issues first hand and felt like the projects I was involved with had to be reactive to these problems.
How can we be preventative though?
So when I had my own child and experienced his own development and challenges with his 'Big Emotions', I wondered how I could guide him through and provide him with a mental health wellbeing toolkit to use when his Big Emotions come knocking.
In order for children to regulate their emotions they need to be able to firstly recognise them. They need to know that it is ok to feel these big emotions, that they will come and go and they need to know how to deal with them.
My son struggled with the usual array of toddler ‘big emotions’ especially anger plus the added frustrations of adapting to a mummy that couldn't do much. He witnessed a lot of my symptoms and I struggled to manage the emotional guilt I felt at not being able to give what I wanted and often tried knee jerk reactions to no avail. But it wasn't until I tried really acknowledging his emotions and consistently followed a script of words and actions to help that we were able to identify them and deal with them. We would say;
Acknowledged the emotion and named it
'I see you are having big emotions,
I see you are feeling angry’
Validating the emotions
'It is ok to have big emotions and feel angry'
Set boundaries to keep him and others safe
'It is NOT ok to (hit/bite/hurt yourself or others) when you feel angry'
'I will sit with you until your big emotions pass' (comfort).
Finding a place to let the emotions out safely
'Would you like to... (bash a pillow, hit a drum, tear up paper, scribble on paper, shout, jump?)'
What is M.E/CFS/Fibromyalgia?
This is a good question….one which it took me years to find out and am still learning. There is debate but it is recognised as a neurological condition which can affect many systems of the body. For myself it started years ago after a trip to Peru when I was 18yrs old. I visited the jungle town of Iquitos and caught a tropical disease Giardia Llamblia which wasn't diagnosed properly for a few months. This caused Chronic Fatigue Syndrome plus a heap of emotional problems as it was very mis understood at the time as I struggled through university.
Throughout my twenties I just accepted that this was how my body worked and didn't really think anything too wrong. I would go mad trying hard at everything and then crash out for long periods. It wasn’t until a long time later (after may bouts of anxiety and depression) that I became pregnant with my husband. I was 30 weeks pregnant when I had a car accident crashing into a 14yr old boy who was running in front of a two lane traffic road to get to college because he was late. The bus next to me was stationary on a red light but my lane was green and I travelled at 30 mph and hit him, tossing him into the air. He wasn’t moving and I thought the worst. The moment it happened I felt a sharp wave of something flow from the base of my spine up to my neck. I felt something ‘snap’. After a stressful wait I was called by the police saying the boy was ok with a few injuries and concussion. I was so relieved to hear he was ok and would be fine. I don’t know what the impact of this accident was on him in the long term as I wasn't allowed to be in touch but it had a devoting effect on my life and over the next few years I became so ill and angry with him for ‘ruining my life’ I felt at the time.
Part 1: The Start of the Fall
After having a very smooth beginning of pregnancy it then became a living nightmare. I didn't know it at the time but I was suffering from PTS with traumatic flashbacks, anxiety that made my whole body shake and twitch and excruciating physical pain like someone had turned my pain sensors to full whack. I couldn’t walk much due to my hips being injured in the accident and had to leave for maternity leave much earlier than I wanted as it was too painful to drive for long periods. I became very isolated, lonely and quite sad. I’m use to depression fleeting in and out and have a fierce determination and grit so I dug deep, found comfort in what I could and focused on strengthening my mind with meditations and mantras ready for labour.
My son was pretty relaxed so waited until the last possible moment to arrive. I prayed so hard on the Friday before I was to be induced that he would come naturally and as I was slowly trying to trudging around my local farm to get him moving, a rainbow appeared. I knew it was the day and it was. It took 2 and half days of long long labour and then he arrived. To cut a very long story short as soon as I had him I started fitting and that was the start of a long journey to be diagnosed with M.E/Fibromyalgia. We were in hospital for a week and my system was so alert and full of adrenaline I couldn't sleep even though I was so exhausted.
Every year that went by my symptoms progressively got worse. So many health problems and odd things that now I look back I can see it was body saying ‘hey girl, pay attention to me. I won’t go away until you address it!’. I saw so many doctors which was exhausting in itself especially with the stigma attached of ‘this is nothing, you’re just tired, all new mum’s are’.
After 3 years of this cycle my hips had finally go so bad I could no longer walk without crutches. I was miserable, isolated and became quite low and couldn't see a way forward living. I just felt like no-one was listening and couldn’t see an answer. With no money to pay for expensive testings I was relying on the doctors. I jumped through all the hoops, tried all the exercises, ate all the right foods and still nothing. So one day my Physiotherapist just said as I broke down and screamed at him…’Right well you’ll have to consider steroid injections then’.
Part 2: The Worst Decision
It was like someone had put a match to my body and lit me up. It was like a really rubbish DJ was playing drum and bass in my body and the amplifiers were shaking and the vibrations never stopped. It was like hearing a noise such as a car door slam, a cough, a sneeze or even a can opener opening some tuna would send me into a high alert and panic. My body would shake. The fatigue was immense like it was hard to just draw breath some days. How can just making my breakfast and having a shower tire me out some much that I need to lie down. And it was never a comfortable lie down. It’s not like you’re tired so rest and you feel better. It’s like your body forces you to physically stop but your insides are torturing you playing tricks making you light up in pain and shake. It was like being a prisoner in your own body. So you had to work on your mind…this was the hardest part to recovery but for me, the only way.
The thing that caused this was my worst decision: having two shots of kenalog steroids in my hips. The following days after my body soared into new levels of pain and fatigue and my nervous system went on high alert. My muscles wouldn't stop jumping and my left side of my body would go all numb and I couldn’t speak. I thought I was having a stroke. This was all whilst trying to look after my son. I crawled across the floor dragging my body trying to call on my phone someone to help me. The doctors still clueless as to what was causing this put me on some drugs which made me hallucinate and feel extremely low and out of control and I plummeted even lower.
I was grateful if I could have a shower and make my breakfast some days. My husband would have to carry me to the bathroom, help me upstairs, brush my teeth. It was humiliating but also humbling acts of love. My body would involuntarily shake, claw up and hit.
This happened in 2017 and followed a long two years of appointments, tests, treatments and my own research until finally understanding I had CFS/M.E/Fibromyalgia. It also showed my adrenals had very low cortisol and with counselling, pain management therapy, nutrition therapy and my own holistic methods I slowly recovered. My emotional baggage also played a huge part and bit by bit I dealt with unresolved emotions that had helped to cause my physical problems and dealing with the grief you feel from the loss.
Part 3: Letting Go & Letting God
Meeting my new doctor was a major turning point. Accepting the slowness was also a turning point. As was every little step I took along the way which ultimately lead me to the top of my mountain. Every pain management appointment, pilates, counselling, reading and researching, reaching out to others in the same positions and pray.
It has been a long road to recovery and I am still on it. I will never be the same again but who is the same person their whole life?! We are programmed for change and to evolve and grow. I own my own story now and draw strength from it.
In the wilderness I met with my maker many times and it was only through slowing down that I could actually hear. I came home from a rather draining counselling session and fell into a deep sleep. I woke up from the most amazing and peaceful sleep having had a vivid dream where God had said ‘I am bringing you a tidal wave of blessings’. The next day I got an email saying I was successful with my Help Musicians Funding. The blessings kept flowing after that. Once you tell yourself to look for the joy you can see it even more.
I repeated a mantra every day personal to my recovery and still use it now in times where I feel I need it. Dr David Hamilton’s book ‘How Your Mind Can Heal Your Body’ was a huge inspiration and helped me find the belief that I could get better.
My book BIG EMOTIONS became a therapeutic project for me. I applied for funding from Help Musicians and received money to help me transition and get a career back within music where I could no longer do what I did before. They paid for musical equipment plus my holistic care from pain management massages, physio, nutrition, expensive vitamins and during this more ‘accepting’ time of recovery I would slowly, very slowly write my book and music. Help Musicians also provided me with a mentor and if it wasn’t for him I don’t think I would have brought this book into the light.
Part 4: Gratitudes
Gary: My rock and ever loving and supportive best friend. Always encouraging and helping me. I couldn't have done this without you. Any of it!
Seb: My source of joy, energy and inspiration.
Mum & Dad: Supportive and loving to the end. Thank you for everything you have done and continue to do.
Jackie: being an eye for my edit and offering support and love always.
All of My Family: Humour, love and giggles and for putting up with all my texts about the book!
Friends: you know who you are! The ones who listened time and time again, who giggled, nattered, cried, hugged and supported. Ever grateful!
Nick my mentor: Thanks for encouraging me to bring my book to life.
Help Musicians: I couldn’t have got the position I am without your funding.
Dr Kate: Literally the best doctor I have met and who has cared for me with a listening ear and a caring nature. Thank You!
Lesley Harper: a turning point in my physical health when working with you and balancing my nutrition needs.
Adele Stickland: I started pilates shortly after having the steroids and her calming, paced classes and positive energy has helped me so much with my recovery.
Recommendations for help:
Adele Stickland: https://adelespilates.co.uk/
A ball of positivity and joy. Here’s pilates class and her book ‘Gorgeous’ is just fab!
Optimum Health Clinic: https://www.theoptimumhealthclinic.com/
I followed the podcasts which were very valuable and the info pack was incredible insightful.
Dr David Hamilton: https://drdavidhamilton.com/
A dose of optimism and positivity needed for a belief that you can heal!
Brene Brown: https://brenebrown.com/
Just amazing! helped me to become vulnerable and own my own story!
Mindful Kind: https://www.rachaelkable.com/
A really lovely soul and recharging podcasts focusing on mindfulness.
My Thought Coach: https://www.mythoughtcoach.com/
The meditations I have followed through recovery helping with sleepless nights and getting into my parasympathetic nervous system.
THE STORY BEHIND THE STORY
Big Emotions has it's own tale to tell about it's creation...