Love isn’t lust, love isn’t romance, love isn’t easy.
Love is vulnerable trust, unspoken respect.
Love is nurtured; its fragile and beautiful.
I love stationery. I love pens, pencils, tape, clips, markers, stickers… the list goes on. Yesterday I needed to buy some post bags for eBay and ended up in Wilkos with arms full of practical trinkets. Practical as I’ve just started a Bullet Journal (more on that anther time). Trinkets because they are all so pretty. Also I was pleased to see that all the best people have Uniball Pens. When I first met the crisis team the nurse had a pencil case with a deer on it and it was full of Uniball pens; we bonded.
This was the result:
So I’m ready for back to school, I’m not going. But I’m ready for well…
This was inspired by a meditation in which you become a mountain! It is hugely borrowed but I found it so inspiring that I needed to write it the moment I opened my eyes…
It’s a bit quiet over here because I’m on the move. Anyone with chronic illness will no that travel is a killer. Anyway I discovered the YouTube channel The School of Life who make videos each week all about emotional education. Here’s the link to their video on anxiety. I also love their other projects such as The School of Life has a wonderful website full of resources. I’m looking forward to delving into their Book of Life sister website that tracks modern living through all of our major cultural influences.
So today has been a little tough. This made me smile though. There are good people.
I don’t want to write in the moment of pure dispair and panic because I’ll just vomit out all the emotions on the page. I’m post meltdown and a very dark place which involves googling ways to ‘go to sleep’.
It’s all too much to even put into words. I’m dizzy when I stand up and there’s acid fire burning a hole in my lungs. My heart feels sore and dull. Prickly heat rises through my body into my arms before I want to pass out. The thoughts come so fast and the pain. Pain I can only describe in physical terms because I’m so used to it.
These are my reasons I feel so low:
I am in constant pain and always tired
I’m worn down by feeling ill all the time
I’m a prisoner of the disease that’s robbed my life
I’m sleeping on a mattress in my sister’s house because I’m too scared to go home
I’m a burden to those around me
I let people down all the time
I can’t to the job I love
I can’t do most things without being exhausted
I’m heartbroken and grieving
I have nothing to show for 35 years of fighting
Yes it’s a selfish list all about me. I know this and this makes me feel guilty too. I’m fighting this so hard, harder than you’d imagine. But this nasty little thing creeps up on me forcing me down a one track alley…
I’ve been trying for a while to lose weight. Anyone who takes the dreaded prednisolone will know how hungry you always feel. I tend to eat really healthily 50% of the time then really lapse the other 50%. I’m trying to figure out why this is. I think it’s for these reasons:
There are ways in which I can challenge these struggles.
Do you have any tips you could share for weight loss and healthy eating, I’d love to hear about them in the comments…
Do you ever think we are just playing at life? Being different characters in some elaborate story?
I don’t really know where I’m going with this post because it’s mostly rambling thoughts! Maybe it’s being in theatre that I always see people as playing parts in their everyday life. Of course there’s Shakespeare’s famous passage from As You Like It...
And one man in his time plays many parts, His acts being seven ages. At first, the infant, Mewling and puking in the nurse’s arms.
It hints that our lives are predestined, and in terms of ageing they are I guess. But when do we become these stereotypes and copies of our own parents? Just now I overheard my sister’s husband asking her ‘did you find the gravy boat?’. It made me smile, I wonder if he rewound ten years to uni he’d imagine ever uttering this phrase? Then I realised I don’t have a gravy boat, does that mean I’m not an adult yet!?
If we are characters can we choose the parts we play or the dialogues we speak, or do we say certain phrases just to conform? This is partially true with the relationships we have with others. I’m a people watcher and listener and love to eavesdrop. Over the past few weeks I’ve had 3 hospital visits in which there has been an enormous amount of time to observe. It’s interesting watching the dialogue between patients and health professionals. Sometimes it seemed as though they’re having two entirely different conversations. The doctors hone in and focus on individual areas of the body or conditions. They narrow down and diagnose and defend their decisions from the get go. Maybe this is because the NHS has a focus on cuts and blame and its created fear and narrow practice? But what these conversations do are damaging, they create a dialogue in which the patient feels it’s their right to be healed and the doctor is constantly defending the attack. Neither lead to comfort or healing or treating someone as a human. Whilst watching I almost wanted to jump in and direct them like actors to resolve the conflict. It’s even more scary when you find yourself in the same conversations despite having seen them happen five minutes before and promising you wouldn’t. The way we are spoken to lures us in without realising and takes real effort to remove ourselves..
If we can change our dialogues can we then we change our relationships and outcomes? I’m a great believer in the fact we cant change others, only ourselves. Sometimes its good to examine how we speak with others and shift our relationships to something that works better.
More importantly, I think, it’s how we speak to ourselves that seems so vital. Our inner dialogue is with us every second of the day so if it’s in conflict or defensive it leads us to dangerous places. CBT has helped me recognise this and although its not an instant cure it makes us aware of catching those thoughts that are damaging. Also being able to see the positive lifts changes our gear and puts us in a better place.
Positive thinking is not an easy task to do, especially when drowning in negative thoughts. But the rule of attraction is strong and we can certainly influence our paths by changing our thinking patterns. I love trying exercises and activities that help with this. I like Tiny Buddha’s 10 Tips to Overcome Negative Thoughts
Then there are the times that everything seems totally out of our control. I often wonder about things being predestined. My life has been a roller
coaster of events and emotions. Without being dramatic I’m sure that I’ve endured more than the average person. Sometimes I find myself wondering if it’s something written out for me or some kind of karma. These thoughts happen especially when I’m down on myself. I genuinely believed that I had a Christmas curse in the past. Just ask anyone who knows me well and they’ll confirm it.
Since being really young I also used to fantasise about being part of a conspiracy. I used to lie on my back and look into the blue sky. Somehow looking into the brightness meant that I could see these little circles that I assume were the shape
of my pupil and iris. In my head they were eyes of bigger beings watching me, not threateningly but there watching my life go by or having a say. I know this sounds a little odd but I guess it’s part of figuring out the world. When years later I finally saw the Truman Show it played on my mind for
years days. Even now I get flashes of thinking I’m being watched or there’s cameras everywhere. I did giggle when I discovered it was an actual condition. Not that I need another diagnosis but I’m sure I’m borderline Truman Syndrome
So in conclusion its seems like some of life we can control and other things happen and we can choose how to react. I’m not sure if any is predestined but I can’t think of a better way to say how to manage it than this:
Written by Jacob Ibrag My heart is devouring itself as we speak. Tomorrow is getting harder to picture knowing that her smile will fade from my mind, eventually. Imagination only goes so far, yet not as far away as she will be. Take me to five minutes ago when she looked into my eyes and said she’ll never forget about the times […]