Fibro my old friend

It’s been a while. Fibro has flared, checked in I supposed. Given me a reality check…

*sigh*

Take care of you.

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Early morning, rain is falling…

I got up at 6am this morning. Deliberately, for a rugby match. Well worth, I have no regrets.

It rained too, then the sun came blooming out in all her glory.

Went from winter weather to summer in the space of 30 minutes, an hour tops.

I made Christmas cards for my nephew and my sister and brother in law, will have to post them soon so they get them early December.

Take care of you.

Beach weather.

It’s spring time here, almost summer. The pohutukawa trees are in full bloom, the sun is shining, the breeze is light, the evenings are long.

I went for a walk with my mum and my nephew today, about 25-30 minutes down to the beach and then because my aunt rang I played with him for a long time. Then his parents joined us for an ice cream after work. We were out for 2 hours!

And I am knackered, my feet hurt, but everything else is doing okay surprisingly considering a fibro flare up yesterday.

But this is so positive. I am so pleased things are looking on the up.

Take care of you.

What a semester.

This blog has gone by the wayside this semester. My paper was a nightmare, the lecturers and administrator were as unhelpful as they could be. Its over now just waiting for my exam result.

Add to that new symptoms and trialling different meds… it is not easy.

I hope to post more often now.

Getting close to December, how prepared are you lot for Christmas/the holidays? I am surprisingly prepared. Had my parents joint gift since August!

What holiday traditions are you looking forward to the most? Which ones are you dreading?

I love decorating the tree and the inside of the house but struggle with the amount of baking that has to be done.

Take care of you.

An Open Letter to Lady Gaga

Dear Lady Gaga,

I must say, thank you. Thank you for showing the world a side of chronic pain that no one (other than us sufferers) sees.

Thank you for exposing an intimate part of yourself to the ridicule and judgement of the public. People are so cruel, especially those that don’t understand. More specifically, those that don’t want to.

I have a huge respect for you, for what you do, for how you do it. I feel like your new album Joanne is a homage to us chronic illness warriors. You sing, so beautifully, about the struggles that each of us faces. You put into words and music and song the pains and fights we have to go through each day.

It feels like your Joanne is bringing all of  chronic illness warriors together. Connecting us through distance, pains, aches, frustration, through good times and bad. Bringing us all together, giving us all a million reasons to keep moving forward.

First and foremost, you are the most important person in your life. So take care of you.

~mychronicpaindiaries

 

Ever elusive sleep

It’s past midnight and I am awake. That awful state of so awake I can’t sleep and so effing exhausted it’s ridiculous.

Foot issues have not resolved, in fact I think they have gone backwards more pain today than earlier in the week.

I have had enough.

I want to rage and cry and scream.

I want to do things without relying on other people. I want walk without it hurting. I want to live a life and do it all… or at least do something!

Doctor Who once said “we’re all just stories in the end make yours a good one.” How can I be a good story? What do I have to say? What can I say when I barely leave the house, when I do nothing alone…

I look around my classes and I can’t make friends. I cannot relate to these people. I am almost 10 years older than them. In three years they will graduate and I … I won’t.

Life is a bitch and fickle too. Why did I get all this pain? Is there a purpose?

Can I have a sign I’m on the right path? Should I pick a new one again? Give me a sign. Anything please.

 

Take care of you.

To walk without pain is a luxury I have never felt. To walk without showing it is a skill I have perfected.

I slipped and injured both my feet, and on top of ME and fibro I have other foot issues like club foot and bone misalignment in my legs…. the injury has aggravated all of that. I don’t even know what to do anymore. Working with GP, physio, podiatrist and nada, nothing… is this my new normal? I don’t think I can cope.

For I will do mine

Ever read a book or watch tv/a movie as a kid and have something really stand out to you?

Like, you don’t even consciously pick up that you have remembered it. Or that you have taken that message to heart. But later on in life you come across it again and you realise how much of an impact it had on your life.

For me, I think I was about 11-13(ish) when I first saw The Count of Monte Cristo and I watched it again recently and this part hit me hard. I realised how much I had be affected, positively, by this passage of speech. How I sort of lived my life by these words… how I got my fight and unwavering determination to keep moving forward.

“Life is a storm, my young friend. You will bask in the sunlight one moment, be shattered on the rocks the next. What makes you a man is what you do when that storm comes. You must look into that storm and shout as you did in Rome. Do your worst, for I will do mine”

Do your worst, for I will do mine. …

To my sister

To my sister,

You asked today why I was so tired. You didn’t ask me… you asked our mum. She told you the truth, I probably wouldn’t have.

She told you I had had a big day. I looked after my nephew (your son) for about an hour at the mall (in the playground for most of it-he played I followed). And then the afternoon was spent at a park standing around with our cousin, her husband and their 3 children.

Mum said it wasn’t like I had run around but it still takes its toll. You’re response was “I know that…” the unspoken ‘but’ hung in the air.

But what?

There shouldn’t be a ‘but’, you should know and understand and accept without question. Its been affecting my life, and yours and our parents’ and your son’s lives for long enough.

I am not angry, or upset. I find that when the ME flares and the brain fog descends I have little room for emotions. The pain and fatigue fill up all the spaces in my soul, I am lost to the storm… the little energy I have I use it to be defiant and shout “do your worst” as I am pelted by hail and rain. Buffeted back and forth by strong winds that howl… this is all metaphorical.

I am in reality sitting on the sofa, zoning out because I cannot focus. The metaphor is better, in a way.

Love,

Your sister