Not sad, not unhappy, not upset, just f r u s t r a t e d.
Frustrated that my symptoms have crashed, nose-dived, free-fallen in the last few days.
Frustrated that despite doing so much to help myself, I am getting worse.
Frustrated that the power of my voice has been reduced to nothing.
Frustrated that the conversations I hold are blurred, short and empty.
Frustrated that I can not speak for longer than a few minutes.
Frustrated that I can’t read a message out to my parents from my brother.
Frustrated that I can not smile at anyone and everyone.
Frustrated that I have to cancel plans with friends.
Frustrated that I can barely chew my food.
Frustrated that I struggle to swallow water.
Frustrated that I am nearly as bad as I was before I got admitted to hospital.
I am not sad though, I am not upset. I’ve been there and done that. I’ve done the crying myself to sleep thing. I’ve done the failing to speak but realising my ability to cry is still real strong. I’ve cried my way through writing blogs, actually most of them are written wearily through tears. I’ve done that, I’ve cried and cried and er, I’ve cried... It doesn’t solve anything. It doesn’t do anything except ruin my make up and my pillow cases.
The greater the obstruction, the greater the will, the greater the frustration…
The obstruction: Myasthenia. Shit. Fucking Shit. So Fucking Shit. (excuse my French, I never actually managed to learn much while I was out there…..…) Obstruction after obstruction. No voice today, no chewing tomorrow, no ability to swallow the day after. Oh and definitely no smiling. And do you know what you can forget about presentations.
The will: No, no, not my ‘will’. I’m not going anywhere. I also don’t have much to put in a will…… But I mean, My strength. My courage. My perseverance. It grows hourly, daily. It grows each time I’m faced with a worsening symptom. It grows with each wave of frustration that rushes through me. I’m determined to not let this change the way I live anymore than it already does. Because oh it does.
The frustration: Annoyed. Frustrated. Breath in. Breath out. Don’t cry. Again. Angry. Again. ‘Annoyance caused by not being able to do something’ YES YES YES. And YES again. NOT BEING ABLE TO DO SOMETHING. Wanting to speak, but can’t. Wanting to smile, but can’t. Wanting to eat, but struggling. Wanting to present, talk, tell stories, laugh, joke… but struggling. Frustrated because I can’t do what I want to do, frustrated that my own body is attacking itself. F R U S T R A T E D.
Life circumstances are not life sentences.
I refuse to let Myasthenia stop me. I refuse to let it change me. I refuse. No really, I refuse. Politely decline its offers of illness and weakness. Not today Myathenia, not today. I found a strength, a determination I didn’t even know I had. Frustration gets me no where except for a few blogs down. Sadness gets me no where except wasted mascara. Anger gets me no where except slightly dented pillows.
Each time my symptoms get worse, I somehow still manage to say “it’s okay, I’m fine, it could be worse”… I’m beginning to think I am jinxing myself!!
But really though, it could be worse… I’m so lucky. I can walk, I can breath, I can see, I can hear… the list goes on. It is not about what I can’t do, it should be about what I can do. I am grateful. I am lucky. I am thankful.
We’ve each been dealt the lives we’ve been dealt, the challenges, situations that have been delivered to our doorsteps. Some worse than others. It is about dealing with the hand you’ve been given. Appreciating the good things and pushing through the bad. Making space for kindness and not allowing space for anger, sadness or hate to grow.
It is about loving every moment, appreciating the little things, finding the beauty in everything, the positives in every situation, adapting, creating the life you want, open minds, open eyes, open arms.
Don’t let your current situation keep you there. Find will power. Strength. Battle on. Battle through.
Ps. If anything, this was just a little pep talk to myself. So if you’ve got this far, thanks.