I’m really excited to be writing this post to share with you what I have learnt and what life has been like backpacking for the last 4 and a half months with MS!
Two years ago
To start from the beginning….I had a bit of an epiphany whilst I was on holiday two years ago. It was one of the first holidays I’d taken since being diagnosed and having that time to listen to my thoughts was so needed. I’d spent the previous two years not really listening to what I wanted or now needed. I was just blindly coping and adjusting to life with MS, whilst processing my diagnosis and working out who it now made me.
I was lying by the pool and for the first time in ages I could hear the little voice inside my head. Up until now I’d been drowning it out with distractions. I guess because I was afraid of what I’d hear.
Being diagnosed with MS is scary and subconsciously distracting myself from my deeper thoughts had become my coping mechanism. I decided to write down what I could hear.
Here’s what I wrote to myself:
• Slow Down
• You want a calmer mind, do more peaceful activities that make you happy. Have more time to yourself. Make an effort to do the things that may take more energy but will give you more energy. Watch less. Find a book you love and read more.
• Re connect with your dreams, don’t block them off. Find out what you want? Stop feeling inferior because of money. Dreams make you happy, having a plan makes you happy. The future is exciting and full of happy times to come. Stop being afraid of it, live in the moment but also live with dreams and plans. You need them.
• Stop fearing the changes in your thinking and your brain. Not letting yourself think calmly or not taking the extra time that you now need is the real cause and that’s something you can change.
• Time to re set yourself and let go of the new Daisy with MS and just re discover who Daisy is, MS is just a tiny part of who you are.
• ‘Remember what peace there may be in silence’
• ‘If you compare yourself with others you may become vain and bitter, for always there will be greater and lesser persons than yourself’
• ‘It is still a beautiful world. Be cheerful. Strive to be happy.’
• Quotes from the Desiderata. www.allpoetry.com/Desiderata—Words-for-Life
After I got home I had a strong feeling that something needed to change. It came to me pretty quickly that the way I was going to get a prolonged period of headspace was to travel.
After a year of planning and saving my partner Charlie and I started our adventure! We have travelled to India, Sri Lanka, Mexico, Guatemala and Belize. It’s been an amazing! There’s been lots of smiling, lots of learning, lots of fatigue (sadly, turns out travelling isn’t a magical fatigue cure!) but most importantly LOTS of headspace!
I feel like I’m better equipped to deal with my MS, I have a clearer understanding of what I need and most importantly who I am! Here are the things that I’ve learnt…
1. Be present in the moment
India is a really spiritual country. It’s vibrant, noisy, colourful and busy. It’s also a country where a lot of people have a lot of hardship. Meeting some of these people and feeling their unrelenting positivity blew me away.
There was no feeling that ‘it wasn’t fair’ or that their situation was anyone else’s fault. There was no blame. Seemingly only acceptance, determination and strength, which in turn seemed to breed a spirituality, a trust and a happiness.
I decided that I wanted to find those things within myself. I wanted to rid any feelings of MS ‘not being fair’. I wanted to feel acceptance, to celebrate and recognise my determination and strength (which god knows as MS’ers we all have a tone of) and I wanted, quite simply to be happy.
I did three things….
I truly let myself believe in the saying ‘everything happens for a reason’, I started meditating and I read two books: The Power of Now – Eckhart Tolle and Lost Connections – Johan Harri
2. Socially I’m way more capable than I thought
Social Anxiety wasn’t something that I experienced before being diagnosed. Since however it has been one of my biggest challenges. I think mainly because I lost all confidence in my brain, my thinking, myself really.
Our budget has meant we have had to stay in hostels, super sociable, everybody talks to everybody hostels!
I have had to make conversation with endless strangers which terrified me. But….in time, it stopped being scary, I started to trust myself and I realised that I can make conversation with new people and that I’m good at it! Blew. My. Mind. The thing holding me back was me!
3. Physically I’m stronger than I thought
I had started to believe that I was steadily getting weaker. I couldn’t often muster the energy to go for a run. When I did my vision was awful and my bad leg hurt and tingled like crazy.
However….since being away I have started running again, practicing yoga and even spent two weeks in the jungle labouring on an eco building site.
I’ve learnt I can exercise. I just can’t expect myself to work 5 long days a week, walk an hour to and from work, have an active social life, stay on top of housework and life admin whilst having a regular exercise routine. I have MS, I have to make adjustments but that’s fine and actually I’m still strong and capable.
4. The western world demands SO much of us
In our western world we are so busy! Even when we’re doing nothing there’s constant stimulations on our eyes and brains. Phones, tv, advertising, endless subliminal messages for us to process.
Stepping away and seeing how exhausting that is has shown me how the simple things, like reading a book, sitting in front of a fire or sitting outside actually make my brain feel like it’s resting.
5. I am not my MS.
The biggest lesson I have learnt! At home I’d become so intertwined with my MS I saw it as one of the most important parts of who I was.
I have felt since being away that I’ve almost being going MS incognito! At home most of the people in my world know I have MS, and that’s not a bad thing. I’m incredibly lucky to have such supportive family and friends and to have had such an understanding workplace but…it means it’s not often I get to see myself through the eyes of someone who doesn’t know. It’s been really cool to meet so many people who are simply meeting me as me.
Learning all of these things have helped me so much. I feel mentally lighter and stronger. Now the challenge is to remember what I’ve learnt!!!!
I don’t think these things are something you need to go around the world to discover. That was just my way of doing things. I think if you listen hard enough your inner voice will be telling you what you really need and from there you can find your way.
I also believe that if you listen hard enough, past the brain fog, past any anxiety right down to your inner you. You’ll hear that you’re unbelievably strong, you’re still the you you’ve always been inside and you’re pretty bloody amazing!
Hello! I’m Daisy, i’m a florist from Bristol, I’m 29, I was diagnosed with RRMS 4 years ago and i’ve just started blogging! I hope to be able to share with you a few things about the ways in which I navigate life with MS. Any coping tools I pick up along the way, and the things that make my journey as a whole a really happy and fulfilling one! I’m currently 4 months in to a 5 month trip around the world, so also want to share with you my experiences of what it’s been like backpacking with MS!
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