It’s been a few days since I last wrote. I almost feel guilty. They have been busy days so I haven’t had time to write & I was too zapped when I returned last night to begin ‘re-capping’.
I know everyone does have a few days off here or there but that’s not why I feel guilty because my blog is flexible around my health and all you wonderful people understand that. I feel guilty because my mood is dipping.
I have found it difficult to find the drive to write today. I feel almost a fraud.
It’s always lovely to hear that you are looking great & better than when people last publicly saw you. Maybe I should be applauding myself - my brave face really can fool so many.
Event city was crazy. Even with a throbbing head after 34 injection I was so buzzed to see everyone. This was my crowd, the kind of company I love to be around. Real life & business talk. No, drama filled, silliness.
Life as I learnt the hard way is worth far more than silliness.
It was wonderful to see everyone but I soon began to struggle.
We went out that evening to San Carlo’s. It was fair to say, I was flagging before the starter. I used to be the best at making conversations, engaging with people in ways others couldn’t and that was a huge strength of mine.
Now I found in a room surrounded by people celebrating birthdays and occasions with pizzas I craved, cakes that looked extremely yummy and drinking wine by the barrels full.
Then look down at my plate that was a dish that I had argued the waiter to simple BOIL rice & vegetables in water with NO oil. And because they were cooked in water and oil added after they believed they had done what they were told. My throat had all swollen up and it was a struggle to be there. I couldn’t think straight, I couldn’t think of conversations and I getting muddled up.
I have felt alien in many places and around many people in my life and now I was an alien in my homeland.
One the reps could see my distress and said he felt for me because he struggled with food in a different way but the isolation it caused him- group meals to miss out on, ordering ‘odd’ foods that he could relate in some way.
I’m 24 years old and I sat there for 3 hours feeling lost. I didn’t cause a scene, I sat and prayed ( I don’t even believe in God.) I wanted to feel the joy everyone else in the restaurant was experiencing- life.
The relief when taxis were called was massive. Normally I feel deeply upset when they all go out and I go home early .. maybe that’s where my acceptance has grown. I have always known that clubs, drinking and late nights weren’t my vibe. I have felt terrible for many years however for being one of the youngest in the industry and yet I’m the first in bed. At these events you sometimes feel it is your duty to stay up and carry on socialising and talking business but I can’t physically or mentally take it.
Though this time it was different - I got back to the hotel, got showered as I was sweating buckets with a temperature after eating ‘toxins’ to my body and got into bed.
I never want to hold people back and I was thankful I didn’t stop my best friend or my brother from painting the city red. I didn’t feel jealous or envy their pictures in the morning like previously I may have done.
I knew I couldn’t have hacked it.
I laid in bed as I do many night questioning how the hell was I going to get through tomorrow ( you always find a way.)
I had sort of pushed them and convinced them to hit the clubs. I guess I want them to live life in the ways I can’t. I have many regrets and I don’t want them looking back and holding a grudge on me because they missed out on things because of my health. They suffer enough having to care for me on a regular basis.
The next day came and again you aren’t in the fun drinking crew but that’s ok you are up and functioning that’s all that matters.
Again everyone comments on your appearance.
My mood was taking a beating with extra pain and feeling so alien, had left me questioning a lot of things.
I have done a lot of things in life to make others happier or feel a little more joy at the expense of my own.
I don’t owe these people anything ( yet because of my illness I always think I do). It doesn’t change I how see it though. A habit I’ve been brought up with and a favourable trait. My Lyme can change my DNA in many ways but it can’t change the love in my heart. I wouldn’t change what I do for people, how I treat them and how I seem to always overcompensate for .. well you being in your eyes a nightmare. However sometimes you just wish they would see that all you do is out of kindness and that you do care.
Yes you take a lot from them but you always try to repay them.
Sometimes however you feel like you are there when you are wanted and invisible when you are the embarrassment.
I enjoyed Saturday night far more than Friday. Although I ate the wrong things and was unwell because of it, like my boyfriend’s girlfriend said - I had fun in the moment and right now that’s what need to feel. The little sparks of joy to keep you fighting through the endless days.
I was however struggling evermore to keep my composure, to not break down, crumble and hide.
Three times in public I broke down and I never break down around people if I can help it, especially in a work environment. To me, from my swimming years- crying was a weakness, you did it in private! Definitely not with an audience. Frankly, you all know me. I don’t want sympathy & pity. I definitely do NOT get upset for attention. Getting upset I want to isolate and hide! These days it’s hard because I just reach a point where I lose myself and can’t re-gather myself in time for people not to question my sanity, me as a person, my knowledge and my health.
Being told that giving up isn’t something we ‘do’ can be seen as motivational.
I motivate myself everyday and try and put in place things, projects and more to inspire me to keep fighting on.
It’s easy for people to say that phrase when they don’t suffer with the endless pain that is a daily struggle. I can rest before events but that doesn’t guarantee me more energy and lower pain levels.
Everyday is a new struggle.
It’s made worse when you know how much extra stress and pain you cause your loved ones. How they all feel a sense of relief when your care is no longer their responsibility.
It’s a dagger to the heart. 24.. 24 but live and are treated like an 84 year old.
You fight for your life everyday but a large part of the fight is for your loved ones. When you realise the pain you cause them you have to consider whether your fight is kindness or cruelty.
One thing chronic illness or maybe even life never comes with instructions about where the barriers lie when it comes to kindness and cruelty.
There are many arguments for both sides but which is the ‘correct’ path to follow. Our ancestors and history tells us that we can’t go searching for answers- that answers find us.
That I do believe but some answers may be crystal clear, others foggy and unclear. You may say- wait for the storm to settle?
You can and I have weathered and tried to dance through many storms. Maybe, I am wiser but I am none the clearer.
Somedays I am proud of myself and my choices in life, others I regret deeply and some I question.
I know there is no ultimately correct answer. That’s what is so hard to get your head around and accept.
You think decisions about what to cook for dinner are difficult, so more serious decisions are ones that cause huge unrest. Emotionally and physically.
We often laugh at fussing over what kind of pasta we want to eat for dinner, ‘it’s not life or death.’ It may seem like a disappointment if you make the wrong choice. Luckily you may be able to learn & have the opportunity to put right your choice.. others you can’t rewind, replay or take back and change a choice made.
Life never promised nor should it ever be expected to be easy. We can’t all pass with flying colours or live until we reach the grand old age of 100.
Afterall where would the challeneges in life be?
My life is far from perfect, I haven’t succeeded in my ways, I am witnessed and gone through many failures, I have loved and I’ve lost, I have been shown kindness and I have been backstabbed, I have felt joy and I’ve felt deep sadness, I have gained a lot of knowledge but still have so much to learn, I’ve caused upset, I regret and I don’t forget, I fight against myself & my nasties every damn second, I am definitely no professional, I don’t always follow the rules which can sometimes be a blessing and others a slap in the face.
The way I live is testing
I don’t just test the waters - I dive straight in.
Everytime I question whether I can survive or will, somehow I do. Often making me think I’m invincible- often causing upset & pain when reality slaps me in the face.
I go to events, meetings, gathering and so on when really I shouldn’t because my health is really not good. Sitting in bed isn’t living. In a dark room waiting for my body to stop attacking itself isn’t giving me anything for me to gain from... only sadness. A hand I don’t wish to hold if I can prevent it.
I don’t live the perfect life and I don’t live the cleanest life but I am not silly either.
But perfection has and never will exist!
Do I feel anger or regret my life?
No. I used to feel a lot of anger- it gets you nowhere. It’s a negative emotion that just drains you when you are already so drained.
I cry over the pain I feel and have caused but also cherish & treasure all the moments - big or small and memories made that brought me happiness.
I don’t regret my life, it wasn’t the one I had planned out for myself but jeeze has it been a lesson.
The most valuable lesson! I only regret the dreams & goals I didn’t reach. Some were out of my control, some I let fear distract me from chasing.
I follow & continue to follow my heart as much as I can whether it means right or wrong & always carry a kind heart, along with my excess baggage.
Many fight, shoot down fellow soldiers, stab friends, hurt family to succeed in their goals.
It’s not always about finishing first at the finish line, often it’s not even about the finish. It’s the impact you made between the start and finish - the race ( our story.)
Make it a bestseller.