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

An open letter to Lorde

Dear Lorde,

You compared your friendship with someone as famous as Taylor Swift, to that of a friend with “an autoimmune disease“. Do you have any friends with autoimmune diseases? I assume not.

If you did, you would not have made such an unkind, thoughtless remark. Autoimmune diseases are not the butt of a joke. They are not comparable to a friendship with a global superstar. Autoimmune diseases are not like any human being at all.

They cannot be conversed with or made to see sense, they cannot give comfort they cannot make you laugh. If my autoimmune diseases did this, they would be a lot easier and much more enjoyable to live with. As it stands, they only serve to bring me pain, fatigue, nausea, vomiting, loss of appetite, dizziness… and these are simply the most common symptoms I have.

There might be “different sets of considerations” but that is your choice to make and agree to those, as a good friend you do those things that make her life  a little bit easier a little bit more private and controllable. Autoimmune diseases take away that choice. They even take away friends, the good type of friend (like you seem to be), the friend willing to make allowances for ‘special circumstances’.

I understand the point you tried to make, though perhaps your words have exposed your age, naivety and youth. Your comment was careless and unthinking and it has caused a lot of hurt within our community. I can only hope it has not done any lasting damage on young impressionable people who look up to you, and Taylor Swift,  and you have made them into something to be ridiculed and disrespected. It is hard for some of us to get the respect of our Doctors, let alone our peers, family and friends.

I appreciate the fact that you apologised and I can only hope that you keep making Kiwis fly.

Respectfully,

Mychronicpaindiaries

 

*Source article with The Guardian here

I feel odd.

Possibly in a good way. I still hurt the pain hasn’t lessened in any way but ME wise…

I studied almost everyday for 3 weeks on top of classes twice a week and did an exam without a relapse. I always relapse after an exam the stress just goes and I usually go down with it. Only this time I’m still good.

The day after my exam I caught a viral infection of my nephew. Cough and stuffy nose nothing more. My mum got it too (and she never gets sick) and she had a fever and lethargic and a nasty cough, glassy eyed… but guess what? It hasn’t knocked me back either.

I don’t understand. Has the ME taken a break? Is it gone for good? I mean I feel tired now but its been a long day but nothing on the scale of ME exhaustion. I am cautiously hopeful that the light at the end of the ME tunnel might be in reach, if not, in sight.

The fibro is still there and maybe that’s where the tired is coming from? I don’t know what to think but I feel weird because my body is doing things I am not used to and its not reacting in ways I am used to with certain stimuli.

Finger crossed. I suppose.

Take care of you.

To the exam supervisor

To the exam supervisor who said I was lucky to only do one paper a semester at uni…

I am not lucky.

I live with two chronic illnesses and their side effects- physical, mental, emotional and social.

I am 26 years old. I have not finished university. In fact, I have barely started. I cannot do more papers because I am not well enough to do them.

A simple comment, meant in (I am assuming) a positive way has resonated negatively with me. I am not lucky. I have never been lucky. Not in this life, at least. And probably not the next.

Sincerely,

mychronicpaindiaries.

Exam tomorrow

And guess who can’t get to sleep…

I have been in bed for over an hour and nothing. Nil. Zip. Nada. Sleepless.

I have to be up early and of course I am awake. Ugh. I need to sleep. I want to be fresh but that is not happening.

Meditation is not working. Nothing is working. I shall stare at my ceiling. Close my eyes and wish for dreams.

Take care of you.

I don’t want him to go.

Just got told today that if my brother in law can’t do his work from home (as it were, too complicated to explain)  my sister would move over to Australia for 3 years. With my nephew.

I am in tears at the mere thought of that. I don’t want him to go. I love that little man and if they moved, if she takes him away I don’t know if I’ll be able to forgive her. I see him every day and to go from that to nothing… I don’t know if I could cope.

I really hope it’s a last resort. Not an actual option. If he can’t get a job here, I mean then for them to move. I could understand, I couldn’t be supportive though. Is that mean?

Personally I don’t think my sister would cope. She can barely cope here, with her family and his to support her. If she moved to Australia it would just be her and her hubby. I don’t think she’ll do well.

I don’t believe in any god or deity but I’m putting this out there into the universe, in the hopes, of some good luck for me for once (and I am aware this is purely selfish) but please let my brother in law get a job either here or to work from home. I don’t want to lose my nephew, or my sister.

A letter to my seventeen year old self

A letter to my seventeen year old self:

 

You’re going to get sick.

 

Really sick, not dying, but sick in a way you never knew people could be. It’s going to be terrifying. It’s going to last, it won’t get better but it will be tolerable and manageable…most days at least.

 

Some days you will barely make it out of bed. You won’t be able to leave the house, be alone, cook or walk without something happening… you will spend mornings on the sofa with everything you could need: food, water, mobile, house phone, tv remotes, books, laptop because getting up is not safe.

 

Your mum will come home from work every lunchtime, your dad will ring at least once a day, your sister will drop everything because you did get up and went unconscious (like you knew you would) and hit your head on the bath.

 

You will hate it. It will last a few months and get better. And worse too.

 

The losses of consciousness will ease (over the course of years, not fully disappearing though), you will lose friends, especially a good friend who you think understands but she doesn’t and she doesn’t want to. You make a new friend a little bit later, you meet a soul sister.

 

You will get a diagnosis that asks more questions than it answers. You will be more tired than you have ever felt before and those will be your good days. You will be in constant pain. Everything hurting all the time. Different levels of pain different parts of the body but still pain.

 

It sounds horrible and it is hell. But you will get through, you must keep moving forward because there is no other option.

 

You will find yourself in this illness. You will call yourself a feminist and an optimist. You will find out that you are stronger (mentally and emotionally, physically you will get weaker) than you could imagine.

 

You will see you parents cry over how bad you are, and will be the one offering comfort. You have a sense of humour to get you through but some days are dark and devoid of laughter. But they pass.

 

You will learn to find beauty in the little things, the brightness of the moon, the rain on the window, the recipe you accomplish, walking a little bit longer today than you did the day before.

 

You will give up your English Lit degree without graduating and without regret. You will take a break and go back to study at a different university and a different degree: Business. Don’t ask why, I’m part way through and can’t answer that. But you will do well. I don’t know if you will graduate, not yet, I’m still working on it. I promise that I will do my damndest to graduate. Studying is so much harder when your mind is blank and gets blanker the harder you think. But you will work hard and study harder and you will learn to trust your instincts… it comes in handy.

 

Let your instincts guide you, trust yourself and you will be surprised at what you achieve.

 

You will learn to love yourself, live each day as it comes, don’t feel guilty for resting… you will do too much a few times and not pace. Learn quicker than me. I still get this wrong and pay the price. Listen to mum when she tells you to stop. This is a long and hard lesson that hasn’t sunk in yet.

 

Don’t be too proud to use a wheelchair, screw what other people think, don’t judge and try not to get too defensive when people judge you. Your empathy level will go down for what you consider a small hurt. But don’t diminish someone else’s pain just because you deal with worse on a daily basis.

 

Most importantly remember who your friends are (they are the ones who stay), that family is there to lean on, you can ask for help and you can cry without being weak. You are strong. You are powerful. You are incredible and you are going to make it through all of this. Just hold your head high and put one foot in front of the other.

 

You got this. We’ve got this.

 

Love,

Me