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

 

Write.

I’ve started writing again. Not fantasy fiction like I used to. I’m writing about me. My thoughts, my ideas, my experiences.

Usually at night I out pencil to paper and during the day I type it up, adding and editing, as I go.

I’m not sure what I want the out come to be. If I want anyone else to read it or not. I kind of think that perhaps I should put it out there and try and get some information about life with a chronic illness, or two, out in the public eye. Try and put disabled people on the radar. We seem to get forgotten in the fight for rights. Basic human rights belong to everybody, no matter their gender, nationality, race, religion or ability.  But we’ll see how it goes.

Take care of you.

Emotions ahead…

I am fuming, sad, disappointed and appalled.

I found out today that my grandmother, in another country, loaned her disability parking sticker to her able-bodied son (my uncle) and his able-bodied wife so they could park in the disabled space before an Adele concert. Guaranteeing themselves a parking space at the cost of someone who needs and deserves that space.

It’s disgusting behaviour of two members of the police force. I wish I could get them caught, I don’t have much sympathy for my grandmother if they end up taking her card away. She shouldn’t be stupid enough to give it to them (and she’s still with it mentally).

I am so horrified and so incredibly sad that this happened.

It’s on facebook, that’s how I found out. I commented on their proud, bragging post about how I feel (politely though) and have received some messages of support from other family members but the three culprits (grandmother, uncle and wife) have been suspiciously silent.

I hate when people use our spaces without a sticker and now I know that my own family do it with a sticker. It’s shocking and yet, somewhat unsurprising, because knowing my uncle (even mildly) you’d know he thinks himself above the law (and above most people).

Take care of you. ❤

Bubble

Ever feel like you’re in this bubble and everything around you is muffled?

Like in movies when they slow down everything around the main character… that’s how I feel today.

A disconnect with everything and everyone. I don’t want to talk or even interact with anyone. I just want the pain to stop being so loud and the day to be done with.

I just want it all to stop. It isn’t fair and I am fed up. Why does every little task have to be so difficult? Why does it take so much energy? Why does it hurt so much? And all the damn time, too.

Take care of you.

Cough cough coughcoughcough

My cold is mostly gone. Lingering snuffly nose and achy-sore limbs but now I’m coughing a fair bit. Uh oh. Hopefully it’s just asthma playing up and not an infection.

I did some baking which has not helped the back pain nor the leg pain. Though they were both fine/a perfectly manageable 3/10 today until this evening when I sat down to watch rugby and they shot up to 7/10. Maybe even 7.5

My nausea has been high today. So perhaps that was my warning sign? I can never tell with nausea it happens so often and in between flare ups that I think it might be its own problem. It is not. I have been investigated by the hospital. Nothing wrong so put down to  ME or the medication for the ME.

Anyway take care of you.

What a day.

I have been in and out of home like a scalded cat today. Out for one appointment back for food, out 15 minutes later for another appointment back for food and out again and back one last time.

Then my nephew was round and he is exhausting and now my back hurts. I haven’t had a fivro flare in my back in a long long time. I forgot how bad it is. Sleeping is going to be uncomfortable, if it happens at all.

Take care of you.

I know, I know…

Love.

Happy Valentine’s Day!

If, like me, you do not have a valentine to spoil or be spoiled by. Do something nice for you. Treat yourself. Buy yourself some flowers, or treat yourself to some chocolates or whatever guilty pleasure you usually avoid.

Self-love is not a thing to be ashamed of or something to shy away from. In any and all of its forms, it is a good thing for you.

You are the most important person in your life and you need to be happy with who you are. Take care of youself, be your own friend, love yourself. There is only one person you will spend your enfire life with and that this you.

It’s not easy. In fact it is very hard. But start small. Treat yourself today. Take a long hot bath, have a glass of wine, cuddle your pet or parent or partner or child. Do whatever you need to do that relaxes you and makes you feel good.

And tomorrow, start the day off well. Look into the mirror and smile. You are beautiful. Say that to yourself. You are beautiful. I am beautiful. Because you are.

You may not see it. Not today, not tomorrow, not yet. But you will. Look into that mirror every day and tell yourself something (out loud) that you find beautiful. It could be your smile, your eyes, your hair…

I do this. I practice what I preach. I promise. Some days I don’t see anything beautiful in the mirror. So I smile at myself and say “I am beautiful” and list an internal quality that holds beauty.

I have learnt to love myself by doing this simple task every day. My body doesn’t do what it should, it fails me most days and that is okay because there is more beauty in the broken and bent-out-of-shape people than there is in the ‘perfect ideal’.

Learn to love who you are. All of you. Even the not so good bits (because let’s be real here we all have them. I’m emotionally cold and judgemental, and I’m working on these things). Nobody is all good, and nobody is all bad. The world is not black and white with shades of grey. It is bright and vibrant, full of colour and energy. And what makes this explosion of colour? People do. You do!

You are worth it. Take the time. Love yourself. At best, I hope you succeed. At worst, I hope you try. Just try.

As always, take care of you  ❤

So tired

I am so tired. Woke up early and unexpectedly by my dad’s alarm blasting through the house because my nephew had messed with the volume during the day yesterday.

And I tried to nap, but just couldn’t sleep. So early night tonight.

The hot weather as turned a bit, rained today and broke the humidity, thank god! So a couple of days reprieve.

Thanks for tips though and take care of you.

Ummm?

Ever have that feeling that you think aboit doing something and a while later think about it again and go, I’ve already done that. Even though you haven’t?

Yeah that is what happened yesterday. I thought about what I was going to write about and never did… what was I going to write about? I have no idea.

It’s hot and humid here. I hate it. It makes me nauseous. I sit in front of a fan with a cold wet facecloth on my neck, it is not fun.

I know it is winter for most of you but any tricks on staying cool?

Take care of you.