Okay... so this is take 5 of this post. I’ve written it over and over. Each time restarting and everytime simply adding it to my draft post box. Why?
Why is it so hard for me to write, I love writing and my mind is always a jumble of words, feelings, stories and creativity.
I guess symptoms can be partly blamed. They haven’t been my biggest fan over my holiday. Mainly my own fault - my need to feel like I am living is far more important to me and is prioritised over the awful symptoms.
The other reason is I think disappointment. I’m aching, sore and hurting.
Not just in a physical sense but an emotional one.
I never believed this holiday would be as challenging as it has been.
I don’t know what I thought. I was open before saying that I thought this holiday would be the key to unlock everything. I guess instead of unlocking the door to heaven and all the answers I’ve spent so long searching for. I have found the key that’s unlocked other doors I’ve tried so hard to keep locked.
I have always worked so well for with the sun, always my friend, never my foe. Giving me that summer glow, boosting my immune system and lifting my mood. I thought this year would be the same. I guess the red flags were when I couldn’t even hack being sat out in the English sun at 22 degree heat at home without getting a poorly head and stomach. How was 40 degree heat going to affect me!? I need a warm climate - not too hot or too cold.
My head pressure has been through the roof, my energy levels have been on the floor and my mood has been some what questionable.
Again, my symptoms can be partly blamed for my mood but it’s not fully to blame.
I am to blame because I expect more from life. This can be productive and proactive. But often it can also backfire. It’s always good to be striving for more because that’s how we evolve, change and grow. I’ve adapted in my different ways, so why did I believe that this time wouldn’t be any different.
I guess I just hoped and really wanted a break. I knew deep down I can’t escape the torture chamber I am in, so why did I believe that I could escape it by coming here?
There have been many times I’ve wanted to cut limbs off, smash my head against the wall and so on, to escape the pain. Everytime getting panicked and upset that this is where it all ends.
The first few days were tasking. I was out. Emotionally and physically. Exhaustion as well as flares meant I was pretty up for nothing. I didn’t do much but drift through the days. I enjoyed them but I didn’t feel like I was making the most of them.
Then came the self-blame. The blame, because you aren’t using the holiday to the full. I wasn’t able to sit in the sun, I wasn’t using the pool because I couldn’t control my temperature and I was in bed feeling ill from naughty food choices by 11.
No 4am parties or even dancing until midnight. We did well if I managed a drink after dinner.
I thought I would enjoy myself - let my hair down, drink and dance. I’ve not felt like drinking at all. Food has been making me feel too rotten without that on top and food always comes waaaaaay before alcohol. ( not like I drink a lot anyway ) one drink and I’ve had enough. I’m not the biggest fan and when you suffer from Lyme disease - we can’t tolerate like everyone else.
I guess I felt like I wasn’t using the precious time I’d been counting down to, in the correct way. I was sleeping and shying away from the sun! The two things I didn’t want to be doing.
Once more, I know how expensive it is to come away here and how important this time was to all my family.
It became harder to get my head around the fact that the place that had filled me with such joy and amazing memories. Like my swimming was becoming something that harboured pain and sadness for me. Memories aren’t as they were, people move on, times change and so does our health.
Something I couldn’t really accept.. and maybe why it’s been so hard to write & publish this.
I haven’t really switched off..
in some ways I have - in others I haven’t.
It’s was AMAZING to be shortlisted for the Diversity Awards and I simply can’t wait for that. It was also great for the Lancashire Evening Post interview to hit the Garstang Courier, Daily Mail, the Daily Mirror and The Sun - online. I have felt better about being away. As I haven’t felt I have lost precious campaigning time before the school break up for summer, as this is vital time.
I have tried to personally reply to every comment and message. I have had an amazing and kind response from so many and I am so grateful! That is why it was so important to me to respond to you all. As your kindness means so, so much to me. It has taken me some time however and so before I know it, it’s taken me 2 hours to get through all the emails, messages, direct message and comments. Like I say.. they are important to me and I will always find the time for them.
I apologise to many if my replies seemed a little scattered. The day the newspapers were published my head pressure was so bad my head was exploding with everything going on too.
The distraction of work and campaigning has been somewhat pleasant for me. Opening up and seeing people read it was heartbreaking for me to re-live it all but emotionally it detached me from my personal feelings.
The sadness and hurt boiling up inside.
Seeing people laugh, enjoy, life and love each other. You wonder if we can ever share our lives with special people, laugh uncontrollably again and simply enjoy life. I try every day. For the most part I am lucky. I know that. I’m grateful and so very blessed for the life and the people in my life. We look back at ourselves though and we know, we know there is a hole. A hole we search day and night to fill. No matter how positive, how careful or reckless we are the hole is always there. Growing, when faced with it head on.
This holiday has done just that. Open wounds and rubbed the salt right in them and made me question the questions I wanted answers to. I know and understand I could spend my life searching for the answers or may never even get an awswer. Is a hard pill to swallow.
Having waiters ask me why my health is so bad and have them scratch their heads at what’s gone wrong since they last saw me four years ago. This has emotionally been hard on me. Once again, people have been kind. Telling me I am still kind and beautiful ( even though I feel the most ugliest duckling alive). It’s nice to hear but when they, say beautiful face - you lose all confidence, the little you did have. You now feel upset and sad about wearing the clothes you try to feel beautiful and confident in. That’s another heart breaking problem that life throws at us. So many of us battling chronic illness have watched our bodies change in different ways:
- facial change
- weight loss/ gain
- skin discolouration
- muscle wastage
- mobility issues
The list is endless. Sometimes it’s better for the soul for people not to comment on your appearance or wellbeing. As it’s a major trigger. The majority of the time it’s only them being polite or wanting to know more. Harsh judgements, just should not be entertained at all.
We cling and hold on to the person, the body and the soul we had pre-illness. We can’t do that, it only drives us insane. We have to take things on face value. There is no magic wand or time-travelling option available. So we have to, have to rock what we have. Remembering that no matter how harsh the judgements are or whatever words are spoken - a kind heart is the only accessory you need not just to live the best life possible, experiencing love but also it’s what makes you truly beautiful and something illness and time can’t take away from you.
I see myself at 24.
I don’t have the body I want. I don’t have the good health I dream of. I don’t currently have a soulmate to enjoy life’s journey with.
I do have so much and have a life full of highs, lows, love, pain, laughter, failure and success. Plus so much more.
I’ve face fears, achieved things I never thought possible and learnt some damn important but hard lessons.
I do have regrets - we all do!
I try to limit them.
I hope for more, and that’s okay. I have dreams and I am guilty of putting myself in no man’s land to protect my men back home from this awful disease. I try to save others because at times I don’t feel I can save myself, I protect others from the pain so my pain feels somewhat purposeful and I try to make people happy to fill a void in me.
And my God - we have done well, actually to finish this and actually publish. I just wanted to finish on the fact that I felt guilty for feeling upset when in paradise. Guilty of being upset that I don’t currently have someone to enjoy these amazing memories and moments with in life as a life partner but realising that just being here and experiencing all I am, is a massive achievement .
Above all... I am me. I am not immune to heartbreak, sadness and pain. I shouldn’t act as if I am.
We all have flaws but it’s how we handle and deal with them that counts.
My life is my own story. One that I can’t edit. So, why should my blog be that way.
Always heart to heart.
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.