I will be frank with you. Recently, my mood has been a little all over. No matter what, this time of year really does wear me down. I have felt myself sinking into that dark hole & place that scares me so much. People know me for being smiley, positive & maybe unaffected by my illness & life in general. It isn't fake - I do aim to be positive EVERY DAY. Though I am human. I do have my days. I cry, I get angry but I bounce back and I think that is important too.
I sat up last night, thinking over this year - 2019. What a year. Full of mixed feelings, full of lessons by the truck load. I feel it is maybe time to be open and raw with you. Before we all begin cheering in the New Year and focusing on Christmas. Here and now isn't just the time to be setting goals for 2020 but it is also the time to look back, take value and learn from the past year. There is no point discounting the rollercoaster ride, ignoring the red flags and EXPECTING 2020 to be completely different with no actions taken.
At the beginning on 2019 - I vowed to make this year sparkle. In some ways it did, massively & in some senses I drown in the rain thunder storms. I had my wheels in motion. With the launch on my book, awareness month campaigns and the cruise but other than that. I didn't really set out my goals to clearly. After 2017 being the year I thought I would literally die.. from diagnosis to SERIOUSLY bad hospital stays. 2018 was a year I simply went with the flow. I felt like I was living on borrowed time. I didn't set any goals. My goals were simply to keep breathing. I knew I had to create myself a purpose and use the pain from the year before in a positive way not a negative one. Which in turn got my deeply involved with my two chosen charities Invisiyouth & Lyme Disease U.K. Being dedicated and setting out the mission to help protect people from Lyme but also soothe the warriors that were already suffering from Lyme and chronic illnesses in general. A lot of the time they suffer in silence. Facing declining health with a lack of support around them. I wanted to be that support. YES, rightly so. I am not trained and I am only ONE person. I can't heal the whole world ( unfortunately) but I wanted to play my role in helping in anyway I could. For me this gave purpose to my own pain and struggle. It gave me a reason to fight. As I had to lead by example. I can't be telling people to get up every morning, if I was just laying in bed waiting for the sun to shine. Don't get me wrong, I am tremendously grateful for 2018. It was a year of rebuilding myself from the ground up-wards. I had to regain strength physically & mentally, build up my confidence and give myself my purpose back. Which believe you me, isn't easy. I was lucky that year. I was given opportunities that MADE me grow but I feel I didn't work for them like I have been working recently. They were opportunities that gave me an insight into what I was capable off and then I was left to work out how to build upon them.
I wouldn't say I ever stopped working & I would never expect something to be handed to me on a plate. But if someone only 3 years ago would have come up to me and told me I would talk on TV, radio, light up Blackpool Tower, create a travel business, run my own podcast I would have laughed and joked that I can't even talk to a small group of 3 people without stumbling on my words . I remember the first time I spoke on radio. I was so nervous, DIDN'T SLEEP A WINK. I was thinking, 'Why the heck did I agree to this, am I stupid?' When the mic came to me. I felt so heavy. The weight of 9,000 + Lyme warriors needed me to fight for them. Get their message across in just under 5 minutes. I began to speak.. and although at the start I stumbled a lot by the end the fears melted away. WHY? Because it wasn't about me...it was about the 9,000+ warriors. I had to fight for them. I didn't matter in the sense that I am blessed to have amazing support, access to treatments and frankly I knew & know I am on borrowed time. I needed to protect lives. I needed to make the invisible BE visible. After that interview. I never got nervous about the interview itself. Sometimes - like on BBC AND ITV I didn't want to come across nervous on camera. I didn't want them thinking, 'Gosh who is this girl we have brought in, she doesn't get her point across.' I needed to be confident but I KNOW THE PAIN OF THIS GAME. I KNOW THE STRUGGLES. I KNOW THE WARRIORS. I knew what I needed to do. At first I would take lists of things I wanted to say but then realised I never followed scripts well. I was best to go unscripted & lead by the heart.
So 2019 - the bar was set high. I had really tried to turn my life around and rebuild.
But I guess I didn't really know what to expect exactly. I just knew I wanted to carry on growing & creating a life for myself -somehow. After the media & people over the social media platforms were finding comfort and relating to my struggle I felt the only way to build on this was to create more content. A form of content that was accessible and could be re-read a million times over. I love to write and often for me it is the easiest way for me to open up, be raw & be real. So a book was how I wanted to go about this. I didn't want it all to be solely about health and negative however. I wanted it to share a story, a journey, a rollercoaster and a heavy storm. To prove to people that we have to rise like the sun EVERY DAY despite everything. We have to be positive & make the best of it because we only get ONE SHOT at this game. I am deeply proud of my book in the sense that for me I created something that was from the heart. I knew it touched a lot of people and people got value from it. Which despite all the hours and work I put in. I was SO pleased I decided to do it.
Spring was a time the 'April showers' literally began coming in and raining on my parade. My health was turning again. I was no longer in control. No longer keeping stable like I had managed to do through 2018. I knew that nothing is ever playing sailing. I knew like I say I was on borrowed time ( still am) but we can NEVER properly prepare for these events. You never know when they might strike or how you will react physically and mentally.
Despite keeping the focus on making this year better than the last, building and not falling down I set my eyes on coaching myself how to become a podcast creator and run my own podcast. I went wild literally on series 1 because I had so many amazing people coming to me asking to be guests. WHICH IS INSANE. I just thought it would be me on my own, chatting away. So, it was amazing to have guests to interview and talk about a range of chronic illnesses across the board. It was a blast but tasking creating 2 episodes a week. One for a Monday & one for a Thursday. So, for series 2 I wanted to make sure I kept to ONE episode weekly and have all episodes pre-recorded and ready to go. My health on the other hand was not good. I was at a stalemate. I was feeling rubbish in myself and that meant I was lacking motivation. I was worried about closing series 1 because I didn't know if I would be able to bounce back for series 2. I really doubted myself. I needed a break though. I needed in-patient care for a week of infusions and I needed a recovery period. I didn't really have a choice. So, the decision was made for me & throughout my six weeks break. Having to schedule and cancel so many interviews I was really worried that I wouldn't be able to get series 2 all worked out. I went through a break up on top on my health and that also meant I was left to figure out how to edit my podcast ( WHICH THANK GOODNESS FOR YOUTUBE) but honest to God I was all for giving u, ON LIFE, ON EVERYTHING.
I didn't want to go on the family holiday because of my symptoms, the embarrassment of my break up & just worried that I wouldn't cope. I wouldn't hack the long tour days, the travelling, finding food and so on. Sometimes, I think times like this is solid proof that you sometimes have to and need to push through. Face fears because you know what you might surprise yourself. I came back SO MUCH MORE MOTIVATED, re-charged when it came to my dreams and my vision for my life. I got over my break-up and frankly I was over my symptoms caging me in and stopping me living.
I know when we were at Breakspear. I was at my wits end. It was the final day of a HARD week. We were sat in the café having lunch. My Mum turned to me and said, ' I need my girls weekend Soph, I need a break too.' Don't get me wrong, I FULLY UNDERSTAND that & I wasn't mad at her. I was mad at my situation become more THAN EVER I felt trapped. I couldn't just simply deserve to take a holiday from my pain. Go to Amazon and order a new body on Amazon Prime to be delivered tomorrow ( I wish!) It hit home with me that day. I didn't know how I was going to cope with all this going forward. I needed life to keep me motivated. Sure I am always grateful for all the support I have but I couldn't allow this illness to keep taking from me. Keep me in the prison I felt it was.
Fast forward to post cruise & fate is a wonderful & crazy thing. A girl locally reached out to me. She was going to Mykonos for a friend birthday and wanted to know what was to top things to do whilst there. I shared my experiences and she said, 'Gosh, you know a lot and love travel don't you?' You should train as an agent and earn commissions on the travel you book.' For me at the time, I sat on the idea for a few days. Could I possibly take something else on? I spoke to my Mum who of course supported me. For me, this could be the one thing to help me break free. Get some form of life back for myself, my family who care for me 24/7 - thank you MAMA, forever grateful and have a new focus. I decided to jump at the opportunity and since that moment, more doors have opened, I am making new friends everyday & learning so much. It was giving me a passion I thought I had lost back whilst still sticking to my fundamental values -to help people. I wanted to get chronic illness warriors beyond their front gate, out, exploring -LIVING. But also like Georgia had me, helping me train and have this opportunity I was now in the position to do the same. Which too was exciting. Helping people who can't work a 9-5 something home-based that they could tailor around their health and earn an income.
Going into 2020... yes I have got reckless especially in the last two months. Eating everything I love but reacts to me. Going out more. Maybe burning the candle at both ends BUT it is far happier place to be than where I was in August. I was putting my happiness and life in the hands of others. Yet, only we have the ultimate control over our happiness most definitely. I want to live and not survive. In June when I had called the ambulance out, was IN MORE PAIN THAN EVER I seriously believed that was the end for me. I thought I didn't fear death but in that moment my life flashed before my eyes as I looked back on everything I DIDN'T DO, THE TRIPS I WANTED TO TAKE, PLACES I WANTED TO VISIT, THINGS I WANTED TO ACHIEVE. That is one of my deepest fears to look back on my time with regret o what if's. I vow going forward to make sure success or failure - I will make the most of everyday.
My aim being:
Learn something new, help someone & making memories. EVERY DAY.
I am realising I have little control sadly on my physical health and playing by the rules hasn't kept me safe. I do have control over my mental health & so that is my focus. If you add colour & sparkle to your own days it isn't just infectious but I think it does help physical health to a certain extent. My physical symptoms haven't improved but how I handle them, how I don't allow them to rule my life has. Which in turn as made me feel so much better & more at peace.
I hope you all have some cracking 2020 goals. Please send them in to me. It is always amazing to hear from you. If I don't get to speaking to you all before Christmas - have a magical one. Make the most amazing memories and let's smash 2020.
Finally a MASSIVE THANK YOU, from the bottom of my heart.
My love always,