Good question. You all know that I suffer with a chronic disease that is widely unaccepted and unknown by many.
You all know I was an elite swimmer with a dream of competing at the London Olympics.
You know I am a vegetarian and have been since I was 5 years old and now follow a plant-based diet due to my health.
I enjoy writing, colouring and poetry but what are my odd little touches.
1. The end of my story: Lyme will eventually kill me. For acceptance of the disease worldwide. Lyme disease needs to be my cause of death on my certificate so then it will eventually be recognised as a terminal disease ( which it is ) and get the treatment it deserves. However you all know bread is my real weakness and especially pizza crusts! Which contain everything I can’t tolerate well (dairy, wheat and gluten. ) So if mast cell syndrome is what finishes me off, I hope it was through eating pizza crusts. Mast cell syndrome is caused by the Lyme, where the cells in the body have been changed so much that they can no longer tell what are toxins to the body and what aren’t - so attack everything. Causing the body to be forever attacking itself. Symptoms are;
- air hunger
- sickness and nausea
- joint pain
- lung pain
- migraines and brain fog
- blurred vision
- GI issues
The more we test our cells with things it can’t tolerate, it gets harder for them to fight back and keep functioning so they end up giving up.
But you want to live.
To get through any day I have the help of my hot beverages.
To kick off the day a big mug of green tea is in order. Good for a boost of energy and detoxing for the body.
After lunch a coffee is needed to keep me perky for the afternoon. I love a good mug of coffee with chocolate stevia drops and unsweetened almond milk.
Mint tea after dinner, to help digestion and settle me down ready for bed.
Essential I couldn’t live without it!! One of the only things I can really taste.
4. I wish I could draw:
I love my colouring and love writing poetry as they are ways of expressing myself and creating something beautiful in the process. To draw would be another way and avenue to express my feelings.
5. Lack of self-confidence:
I may appear to be comfort in my own skin and in myself but I’m not. No way. The brave face has to be painted on every day. Through life I’ve experienced many confidence blows which have affected me greatly and getting over them is what I work towards everyday. Easier said than done!
My life hasn’t gone to plan, far from it. Every opportunity that comes up sparks excitement because for me I can’t do a lot of things anymore. When I can’t even do the things I thought I was able to. My life often just doesn’t seem to have purpose. You feel annoyed and upset. Everyday I fight and feel constant upset and disappointment in how my life pans out. I may appear to be satisfied with the work I have done and do but there are many events , tasks and jobs I miss out on which lead to disappointment.
7. People fascinate me: you can learn so much by meeting, greeting and listening to people’s stories. From their stories you can then go on to learn from their mistakes and build on your own goals as knowledge is power. People’s stories can motivate, being comfort and encourage you to dig deeper, work harder and fight on.
8. Fear: I can’t tell you a day I don’t wake up in fear. Utterly and completely overwhelmed by it. I often think I don’t fully face my fears. Like going to event alone or talking when you don’t know the person. Yet I face the fear of pain everyday which can often be weighed up as a harder fear to face. I hope hate fear and wish I could be stronger.
9. You sit around all day, you are spoon fed and do nothing: oh how I wish you could walk in my shoes for day. Then you may realise.
I sit down a lot yes. I am plagued by pain. But I don’t just sit. I am mentally always on the go. I work extremely hard in many ways people don’t see and will never understand. That is something I will have to accept. Hopefully my time will come.
10. Drama queen: you are always sick?! You can’t always be sick.
How I wish, just wish you could be me. Yes I may express that I feel unwell and some days I may be less productive but there is no way I make a big scene about it. I blog my symptoms and stories so people can relate, not for pity or for attention. Our disease is extremely isolating it is important for our community to have a place where they can find comfort in their struggles and that is why we run the Lyme Discussion Group. I can’t alter my bloods or vanish the physical symptoms .
Sorry to disappoint.
Being chronically ill is not fashionable, it’s hell and should not be branded as a trend or an excuse for attention.
My dream is to be free of my illness.
My wish will never be granted most probably in my lifetime but I fight everyday for furture generations to be free.
11. A sensitive heart: I’ve been broken many times and felt a lot of pain. I always give everyone and everything all of me but rarely get the same back. I put myself in prime position to be hurt. Yet, I will never be any other way. I just wish I was stronger to heal quicker.
12. Boy advice? I adore male company, they are easy going and just full of fun. I am blessed with many close male friends. This hasn’t stopped me from being heart broken and being through some difficult times when it comes to boys. I would be the worst person for boy advice.
Monroe had it right about having the men love you more, so you will feel less hurt if anything happens.
I am always the one to feel the hurt. I put my heart on the line, everytime.
13. What do I live for?
This is a simple yet complex question.
I live for my friends and family - of course.
I always live for the hope that I can make a difference in life. Help future generations. I am not on the front line like nurses, doctors and soldiers that save life’s every second of every day directly but I hope to save lives in an indirect way of getting recognition of our illness, make the public aware of the dangers and prevent further people from being a victim to this hell. I live in hope I will get more invites to events and so forth so that I can meet more people, build my audience and touch more hearts. Whilst having fun.
Days are often difficult.. are all these unpredictable goals enough to keep living with the pain. That is why disappointment is a far greater blow for me.
14. Acceptance: I fight in all areas of my life for acceptance, yet often advise people to be unique and rock their traits. Yet, acceptance is super important in many ways.
We must accept our ill health, our limitations and our situtation.
We are left to accept heart ache, loss and grief.
We are left to accept displeasure and disappointment.
We are left to accept our dreams cannot be for filled.
The above are hard, hard pills to swallow but key to recovery. Something I work on everyday.
15. Living up to expections and comparisons: My live is plagued by these. I never and can never seem to worry about not succeeding.
Every little glimpse of hope I cling on to hoping this could be my time to shine! When it all goes wrong the grief of the loss is 100x worse because you put all your energy and hope into it.
People don’t want to hear about illness. People run from those kinds of conversations, not knowing what to say or how to say it. You don’t want to be talking about your health either but then you look back at your life and question what is there to talk about?
Broken hearts, lost dreams, loss of one’s self and the Lyme fight? All of zero interest to many. You feel like a total waste of space and unworthy. These feelings cause me to push, push and push to try and keep winning small victories.
Finding purpose and worth.
The media can often paint a brighter, happier picture than reality.
It’s important to answer the commonhard hitting questions with truth so people can relate and realise the true struggle that is my life.
It’s far from lazy days, sunshine and roses.
Plagued by pain, disappointment and heart ache felt in more ways than words can explain.
We are all human.
We are all unique and deal, dream and live in different ways. The above is just how I, Sophie Ward cope with life.
A girl in her mid-20s but living more like an 80 year old.
My way of life or coping mechanisms are far from perfect. There is no right or wrong answers.
We aren’t alone in our struggles.
Feeling sluggish and rubbish when you have woken up? Get boosting up on bananas the more the better - they will help settle your stomach, boosting digestion, they are a mood enhancer, they will give you the energy you need and keep you full. Buy my book for banana receipe ideas.
Wake up every morning and ATLEAST have one glass of lemon water before doing anything else! Ideally try to drink a litre of water. The lemon wakes up your digestive system ready for the day and has great cleansing properties.
Check your dairy and meat intake - dairy can sit in your system for up to seven days unable to digest properly. Meaning other foods also get neglected and nurtients aren't absorbed properly and you feel extremely bloated. Go and smell your food bin, your stomach will be in that state. Rotting foods in your belly - hmm nice.
DO NOT FEAR CARBS - THEY ARE NOT THE ENEMY! CARB UP!!
Bananas, Rice, Potatoes, Leafy Greens, Corn, Beans, Lentils etc PACK THEM IN GO MAD.
NEVER COUNT CALORIES - NEVER RESTRICT!! These restriction 'starvation' diets who tell you to only eat 500 calories a day then have a treat day - where you binge out and eat WAY too much, is simply messing up your metabolism and on your binge days yours body stores all the fat meaning you gain weight because it knows it is going to go back into starvation mode and needs to hold onto every little thing it can. HELLO WEIGHT GAIN.
Life is too short not to live it to the full, making yourself happy.