I know the cold hard facts, I know what my situation is.
I have a choice...
To be miserable and be lazy or paint a brave smile on and be proactive.
It’s often extremely tough - but I choose the latter.
When I am out I will always give 100 per cent to acting normal. I can’t stress or explain how tough this is. How challenging it is. A few hours socialising is like a full day’s work for me.
Don’t get me wrong I love events and love socialising but it really does wipe me out.
It’s hard.. people around you telling you to just live, eat what you want and just throw yourself into activities. I do what I can. I don’t have the will power to avoid foods that will react to me, the truth is I am damn greedy when it comes to food and miss my secret pleasures too much.
It’s also scary. I am always paranoid about coming across not acting normally. It does however make me really upset when people say I look better and everything will fall into place. I know I feel awful and them saying that makes me feel guilty for not improving.
Last night was a perfect example.
If made a real effort, tinted moisturiser, eye make up and even bronzer! I had glammed up and really spent hours just re-charing in preparation. My outer shell looked the part but my body was breaking out in rashes, my throat was swollen, my joints were aching. I didn’t know what was going on with my body but I ignored the signs. I just tried to live in the moment. As much as possible. Often drunk on love, family and friends I get carried away and feel invincible, eating, drinking and being more active than my body really can cope with. It’s all good until I get home and a few hours later the reality of my sins hit. My body reacts and I’m left to deal with my crimes. I deserve the extra pain for the approach I take. But people don’t see the price I pay.
Of course people don’t deserve to be at the end of my reactions and what you could call reality. That’s why my own space is so important and vital for me. I must get through the pain privately so then I have the energy to be the Sophie that people know.
I was thinking about it the other day.. how I am so fearful of heights, fearful of losing things and fearful of pain. Yet everyday, I face my fears head on and somehow, somehow get through them. So why do I fear them? I lie in bed in a morning wondering if I can handle the day but I always do..
After last night, I was wondering if I’d make it out again tonight but no matter what, I will still be there and go.
A. Because I honour my commitments.
B. I can flop and deal with my sins tomorrow .
C. I want to LIVE.
D. I’ve been excited for this event for a month now.
My life is far from exciting now a days.. events that come up have to be taken on and really enjoyed.
I don’t know my own body anymore. I can’t control my symptoms and they change everyday.
I can’t tell you why or what has really caused them most of the time.
There isn’t a quick fix. I face challenges and problems everyday that I have to overcome.
Some I can hide, others I can’t.
I’ll smile at you, I will glam up, I will pretend like I can hack a manic social calendar but the nights are deadly and long when I pay the price of simply living.
Life is a gift.. it is.
But for people with chronic illness it can often feel like a curse because we can’t live the life we want or expected to.
People are watching - we must smile, I will always smile, through laughter, joy and tears and sadness.
We must hold on.
Be glam, bring some sass and fight our illnesses.