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.