Living With Lyme It’s My Valentine
Living with any chronic illness and love makes things 100x harder.
We fear love as much as we do loneliness. We over compensate to fill the void we have. We spread love and kindness but have to build barriers up around our own hearts. So that we don’t hurt ourselves and others.
It’s important to try to keep faith in love and focus on the love that surrounds us everyday. Rather than chasing a personal love we believe we need.
Self-love is so important, but one of the toughest lessons to learn in life. Many use Valentine’s Day to celebrate their romantic love. Yet beyond all the roses and the hearts we must show gratitude to all who colour the pages of our story with their love and kindness.
That’s the love that really matters. To accept oneself and to be grateful for the people in our lives.
Valentine’s isn’t a time to feel depressed or lonely because we don’t have a partner. We could have a partner and still feel lonely. Keep an open heart & that habit will keep you feeling experiencing love from all around.
Top News Of The Week.
A news reporter in America has made 3 short videos over the past week highlighting Lyme Disease and her own person battle.
Please use the link below and take a watch.
Just six minutes of your time can really explain the heartache this disease causes.
The more people who are able the share their unique stories the more we don’t feel alone and crazy.
Today has been a struggle, I don’t want to move but feel guilty for not moving. There is a whole world outside yet I feel trapped. Too poorly to go out on a trip out and so forth.
Last night my brother and his friends had a take away and as per usual lived life with the flow. I realised that I would probably never again be able to do the simple fun activities like getting a take away, eating out on a win and so forth. Simple things I used to adore doing with friends.
I still mourn the days where every weekend I would go to Light Ash and eat the biggest slice of cake. It was the best! I haven’t been there for so long. I avoid it, the upset and torture of seeing but not be able to eat the cakes is far to great.
I feel so mad at myself because at the time I didn’t appreciate it, I took it for grateful. It was just a given that I would go there and eat my body weight in cake.
Now I lie with a swollen, sore throat, aches, joint pain, head pain and liver pain because I had one truffle chocolate. It really hurts me.
I am lucky that I not like Sophia, who can’t enjoy even simpler things like hugs and I feel guilty for at times, ‘feeling hard done to.’ When really I have a lot and can still enjoy a lot.
Seeing friends gets harder, you activities list is short and limited. Gone are the exciting times. A couple of hours out of the house zap me.
The weeks are normally so busy that by Sunday I am dead. Literally. I hate Sunday’s. I love the fact I see my best friend for a few hours but I hate how lazy I am and unproductive they become because of fatigue and pain. I hate the thought of another busy week and feel on edge about how I am going to cope.
I almost feel like I am back at school. Worrying like I did the couple of days prior to returning to school after the holidays. How would you cope with another six weeks until the following holiday?
Again, I feel stupid about worrying about those days. Days are far more difficult now then ever.
I look back and think about all the memories I have created through my life. Some I adore and are proud of and some I hold regret towards.
I watched a film on Netflix the other day called, ‘The Last Holiday’ it was about a woman, she went for a brain scan which showed a tumour. She was told she only had 3 weeks to live. She panicked. She began looking back on her life questioning her actions, decisions and regretting things she missed out on food, holidays, friends and so forth. She packed up and went on a dream holiday. Travelling in luxury and challenge herself everyday to something wild. She created the life that made her happy instead of living the way she expected.
She had nothing to lose. - she only had a short time left.
In the end the ending was the scanner had been broken and the woman was fully well. Yet the three weeks she live for her, brought her, her true friends, experiences of a lifetime, the lesson of gratitude and happiness.
Everyone tells us to live like there is no tomorrow and I know my friend wanted me to do a bucketlist. It’s difficult when your days are limited and hurdles are put in place. It’s hard to look on the bright side - it is. You have to miss out or adapt to so much. They say do what your heart craves - my heart craves far more than my body can handle. Adjusting is difficult but I am used to it. I am always adjusting to make others happy and now I have to apply that to my life and body.
People laugh at me for documenting all my memories. They forget that three years ago Matthew and I were preparing to take on America, this time last year we were at the Birmingham show all week, eating out, long days at the show and preparing for Cuba and now,now. Well let’s not go there - it’s depressing.
24, the whole world’s your oyster. Yet these days it seems more like my room is my oyster ... I travel the world not via plane or train but through letters to people worldwide.
It’s important to me to make a difference no matter what and be as productive as I can.
Yes it’s important to make yourself happy and I try my best too but sometimes my only focus is to make others happy to fill the void I feel. It kills me seeing my brother go out and about without a care, whilst I sit in trying to colour and destress.
I’d never want any of my loved ones to stop living and at times I face the guilt from them missing out because of me. Their happiness means the world to me and to see them happy again helps feel my void.
I wish I could do more..
Maybe I should just shut up and be grateful. Finding a balance is difficult. Living without causing extra pain. There are no clear cut answers only experience. I have to aim to try and do anything to fill me with joy as that joy is the medicine that keeps me fighting.
Whatever you are doing this Sunday, I hope you enjoy it and make yourself happy. Whether its with a glass of lemonade or a coffee with a friend.
We must smile, to light up the world a little.