After Party After-Math

As always I get caught up in the moment. 

Mainly eating everything I shouldn’t, always in excess- never in moderation. 

I get so sick sometimes of not being normal. 

Remember, I spend my life being judged and questioned about the way in which I eat, live and treat my disease. 

Food is a real weakness for me. Good food and good company is what makes an event. What’s harder is the fact it’s my favourite foods that effect me to most and are the ones I pine for. 

I get so wrapped up in the moment. I feel so pleased to see my friends and family. Have everyone together because my life is very isolated and lonely. It’s rare to get so many of us in one room these days and have an event I can actually attend. 

When you miss out on so much, the buzz of not missing out takes over and you want to live this moment to the fullest. Never knowing when this opportunity will arise again. So, you feel on top of the world and that nothing can affect you. One of the big problems is I often don’t feel the consequences of what you can describe as pure stupidity and that judgement I will accept, doesn’t hit me for a couple of hours after so because I feel fine at the time I keep reoffending. Only allowing the consequences to be 100 times worse. 

You lay in bed kicking yourself and praying  for sleep or death at some points because you just want to escape from the pain and battling taking place in the body. 

Why, oh why.

You had an amazing time. 

Yet... 

Being ‘normal’ has really zapped and wiped you out. 

It hits home harder everytime that you aren’t like everyone else. That a simple gathering can take two days to prepare for then wipe you out for a week after. The sentences of the sins committed never get lighter, easier to manage or quicker to get over. 

Somehow the few moments of joy are so precious to me, that nothing else matters. 

Along with dealing with the flare up’s we have the paranoia. Was it a good meet up? Was I a good host? Did people enjoy themselves? 

The endless overthinking and over analysing of every second of every minute. Wondering if you said sentences that made sense or just uttered a load of rubbish. It’s upsetting and heartbreaking. How we look to these simple moments for acceptance and a glimpse of normality and happiness. In order to achieve this we are faced to deal with punishments beyond belief. 

I was very active ( for me anyway ) this morning. I attempted to sit in the sun this afternoon only to regret that thought. I felt increasingly sick and had to resort to lying on my bed. In the shade, hoping not to be sick. My body too busy trying to keep me stable from yesterday’s bombardment without any extra’s. The sun is another blessing to so many. We see a patch of sun and run at 100 miles an hour towards it with our bikinis in hand. Feeling guilty if we miss a minute of its rays because it’s appearance is so rare. Yet, too much sun can cause me serious problems and so yet again, I have to time my time outside enjoying it or else pay the price for the luxury.

Overthinking and having the becareful killing the fun vibe. 

You get to the point where you realise how tough life has begun. 

We get judged left right and centre-

- you don’t eat ( when you eat loads)

- you don’t sit outside when it’s sunny and make the most of it. ( when you wish you could).

- you are so lazy. ( maybe I am not as active as other people but mentally I am always working towards something).

- why are you so wrapped up in 30 degree heat ?( do they realise how stupid you already feel?) 

- why are you so fussy ? ( like you are a dramatic diva)

- why can’t you drive. ( like I want to be isolated?!)

- why can’t you come out and stay longer. ( because if I go overboard a few hours costs me a week of being poorly.)

How upsetting and heartbreaking it is to have to always over think everything. Often testing our own well-being to fit in, be normal or what we see as being happy.

Throughout my journey and over the years I’ve accepted and adapted to a lot. It doesn’t mean I am perfect or have ac’ed it all now. People are often quick to say, ‘ you have been sick for a long time now, why isn’t there any improvements.’ My health is in at a stage where I have a disease which in the end will kill me. It’s a dismissed and misunderstood disease which makes it increasingly hard for us just normal human beings to understand and get our heads around. We fight the people who should help up get better and are forced to learn how to live and deal with our conditions- alone. A one man team, is hard. I am lucky to have an amazing support system but I ultimately live in my body. Nobody else truly can feel what I feel. Like happiness, well-being is an on-going journey. It’s not a destination or an overnight miracle. It’s an endless rollercoaster of high’s and low’s, learning all the time. 

What’s upsetting to even myself is, deep down I know how poorly I feel and I think ultimately that is why I am so often stupidly reckless. I hold on to any joy and happiness possible. Always so fearful of never knowing when it could be that last time I can eat crisps and laugh with friends. The fear of the unknown and my sheer determination to make the most of the life I have makes me ‘push the buttons’ so to say and test the limits to try and ensure I don’t regret anything further or miss anymore than really needed.

I laugh, am ‘happy’ and seem unaffected by my awful disease and illness at events. Remember, I do this to protect you and to partly protect myself. I want you to enjoy my company, as I enjoy yours. 

Believe me I pay the price but I value my loved ones, friends, guilty pleasures and life itself over my unbearable pain. For me this is how I stay sane and inspired to keep fighting. 

So right now! I wish I had sat indoors with my uncoated nuts and just sat talking normally. But I know that wouldn’t have made me happy. Flying around, eating crisps, pizza crusts, salted nuts, being exposed to the hot sun and being high on life was what helped me create memories and spend quality time with the people who matter most. 

No matter what the punishment I will always push myself. I just wish the ride was far easier, that life was slightly kinder and I didn’t have to pay such a hefty price for simple pleasures so many are so lucky to enjoy without a care. 

Overall another successful meet up, thanks to Mamanger of course. It wouldn’t be a success without her. Thank you!!

S

Xoxo