Showing posts with label Sun. Show all posts
Showing posts with label Sun. Show all posts

Saturday, 11 February 2023

The woman waiting for the plane.

She's waiting. Sitting on the hard, formal, chairs of the airport lounge with tears quietly running down her face. Others, talking excitedly, walk past but as they see her they turn their heads away to avoid eye contact. Pretending she's not there. Not one person offering even the kindness of a smile. The reassurance of a gaze.


To others, she doesn't feel she even exists. Invisible. Just like her thoughts. If only they knew. If only they could see. Would then someone be kind enough to smile? To offer a kind word? To just understand?


Life with anxiety. Where even a positive happy experience can be turned into a mountain of fear. Terrified of what could possibly go wrong. Trauma reoccurring. Just as it did before. Those experiences that over time shaped her into what others see as a nervous wreck.


"Sitting here waiting... waiting... I'm waiting for my holiday but inside I'm sitting here waiting for brain surgery again. Waiting for something where I have no control of the outcome and am terrified at the possible prospects.


So now, I'm overthinking all the 'what if's' and just feel scared. I don't know what will happen. I can never know.


I just have to trust. Again.


Accept that Post Traumatic Stress Disorder has reared in ugly head again and in that acknowledgement it's a kind of release.


A fear still, but a release.


I might be crying at an airport terminal, or tears streaming down my face on the plane. But it’s OK.


I trust it’s OK.


I have to.


There is no other way.


I've won far harder battles before."



It doesn't matter if her anxiety is caused from nervousness, excitement, or downright fear. Her body just feels the same, it responds in the same way. Blank. Empty. Full of terror. Her fuzzy brain magnifying once again into the floaty, wobbly feeling she has been accustomed to for the last 6 years.

 
The invisible injury of a cerebellar brain tumour and the surgery to remove it. The resulting brain fog, loss of balance, coordination, and fatigue. A brain injury. The loss of words when her brain feels like its shutting down. Unable to explain to even to those who love her and will listen. 


Other people, most of the time, think she looks vibrant, healthy, and well; they cannot see the inside injury. Her scar is invisible, some of it hidden by her trademark red curly hair, the rest is internal. Her trauma is in her brain. But then there is the judgement of her looking and sounding like she's drunk, when in fact she's just tired. Sometimes physically tired, but others just emotionally.


An invisible illness.


A life where she often doesn’t belong.


Only a few understand the fight every day to keep going. Finding the joy and happiness in life rather than be drowned by the fear, getting frustrated by the parts of her she lost in exchange for her life.


Yet, most days she smiles, talks to anyone, especially those that she can feel also need the comfort.  She can tell. She senses their pain. She knows the frequency they are resonating. Always there for anyone who needs her. Others saying she's the only one who cares. Who understands. Thanking her for helping them deal with their own anxiety and trauma. Thanking her for her support and encouragement, her advice and experience. No matter the cause.


She's the one who tries to be there. To stop others feeling that pain she's felt far too many times before, when she felt all alone and that nobody else understands. 


A life full of anxiety. Anxiety that was only able to be acknowledged by others when they classed it as a 'traumatic experience'. Her thoughts and her life before that didn't count. No one saw her pain, even those that knew what was happening. They turned the other way, although they knew the traumas she endured, but they never uttered a word, never gave her support. Never said sorry. Her pain has always been invisible. So, she just kept silent. She learnt that no one listened when she shouted anyway.


Her emotions never mattered to those they should have. They were a nuisance, not easy to face. It was easier to say she was too emotional and distract her. So as a consequence, they stayed bottled up inside until they could no longer stay hidden. When she had a valid ‘excuse’ to be upset. When it all exploded.


The release from finally being allowed to cry.


So now, once again, she sobs, tears releasing the memories hidden in her cells. The feelings that need to be expressed to be able to move on from. 


She may look weak, crying, and pathetic. Yet she is stronger than many in allowing others to see the real her. In keeping going when she wants to stop. Caring when others can't see pain. Loving when others see hate or anger. That’s stronger than most of those people that walked past her blankly, grabbing a beer on the plane, a drag on a cigarette, to keep them going. She’s facing her fears head on, letting them wash through her to be released.


As she fights every day, both from people not seeing her struggles nor those invisible fears and demons in her head.


The ones she wants to remove from the rest of the world too. 


The strange thing... when she sees others in that same place as herself. She smiles, asks are they OK. She listens. She cares.


Silently she sits on the plane, eyes shut, listening to a meditation on her phone, taking it one breath at a time. Allowing the physical discomfort in her head from the altitude of the plane to wash over her, along with the discomfort of her mind. Reminding herself it will pass. It always has.


Her husband is holding her hand, but right now she can’t even explain it to him, she can’t easily explain it to herself, plus her thoughts are too painful to say out loud, then there are others she wouldn’t want to hear what she says. She doesn’t need the judgement now. So, she smiles at him, says she’s OK and needs to zone out, while fully appreciating the strength and support his presence brings. She couldn’t do it alone.


She keeps going. She has to trust.


She's more than halfway there when she gets off the plane. The heat hitting her like a wall to bring her back to reality. Once again, she's fought the demons in her head, so now she’s feeling blank, exhausted, and empty. Yet still trying to act normal and not draw attention to herself when really, she just wants to sit down alone. Maybe get some sleep, the easiest way to be able to restart again. 


In the car ride, she can feel her soul start to relax... that familiar smell, the sound of crickets chirping, the warm air, the amazing views, the sights she's missed so much... she knows the way although she hadn't been back for years. 


It's been so hard to travel for a while. Brain surgery, having to be cared for, fatigued, not able to cope with planning or change. Not to mention that having no money from her husband losing his business while having to look after her and the family, playing a rather large part! Then lockdown, isolation, rules she couldn’t agree with…



Now, for the first time in decades, its just the two of them alone. 


Eventually, she arrives at the village she's known for 37 years... loved since she was 11. 


The place that as a child she never wanted to leave. Where she dreamed of living in a villa with an olive grove, being able to fall asleep hearing only the sound of the sea, of nature, of her joy.


Not much has changed. She just appreciates it even more now.


As she finally sits down in the sun. Feeling the much-needed warmth on her skin, hearing nothing but the sound of waves, leaves rustling in the breeze and the crickets. Swallows and butterflies flying all around her. 


She cries a bit more. But this time it's tears of joy. 


They are welcoming her home… once again she feels she belongs in this world. 


Her soul can finally start to heal.

 


The Woman Waiting for the Plane

💖💖💖💖💖


Thursday, 27 August 2020

Sanity Amongst Madness

This it what has kept me going the past few months...
 
 
Nature
in my garden!

 
 
Watching Bee's...


 

...and the spiders eating them.




Appreciating the flowers...





and the sparrow's, and occasionally other birds, on our bird-feeder.



 

For a garden that, for decades, never had more than a passing pigeon or robin until only a few years ago; finding about 25 sparrows around the bird feeders is amazing. 


When the world outside our house has never been so insane,

 it's been calming to just sit and watch.

 

From the various bees, wasps, butterflies, dragonflies, damselflies, moths, grasshoppers & spiders to the fluffy fledglings being guided when it was safe to land (normally when our dog wasn't in the garden) and now seeing SO many more birds than ever before. Some even trusting me enough to continue feeding even when I am only a few metres away, one hungry pigeon still feeding whilst my son tipped the bird feeder towards him as he couldn't quite reach! 

Anyway... even while this year has been awful in SO many ways, masks everywhere being the final straw, this summer has been lovely in both weather (no planes!) and nature. 🌞

 

It has been my sanity amongst madness. 💜




© Pictures all copyrighted to Jo Barlow


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Wednesday, 8 April 2020

A Very Quiet Birthday

Two days ago it was my birthday 🎂 I ended up spending it at home with my family. No surprise there being that the country is on lock-down! 😁

On the surface there was no presents (as no one could get to the shops), no meal out and I couldn't even get a takeaway of food I wanted.

Last Saturday evening also should have been having a birthday gig with my husband and son's band. It is the singer's birthday the day before mine so last year it was a fun event. Nothing pressured, just an enjoyable evening. But this year everything is on stop...

So instead I got a nice home cooked meal and my son making me a really tasty gluten free birthday cake. (Believe me tasty gluten free cake is a task in itself!) Nothing else different from any other day.

Apart from their presence in the present -
which I guess is the best type!! 💜



But then I never much liked my birthday, I hate people fussing over me as they are 'supposed to' rather than they 'want to' (Just to let you know - any other day of the year and I am up for treats!) and I am not the artificial huggy, kissy type. If you get a hug it's as I mean it, and care. We even chose to get married abroad as I didn't want a wedding what feels to me a fake, and expensive, parade.😬 So I guess 'nothing' doesn't upset me too much?! Not much different to lock down being quite like our normal daily lifestyle...

But I did get a birthday spent outside in the garden, with blue sky and no 'plane lines' (even if it wasn't as sunny as the day before.) The loudest noise for most of the day the birds nesting in the bird box in my garden, rather than the constant volume of traffic driving past, the constant line of planes in the sky or the rumble of a transporter dropping off cars to the garage nearby, or people revving engines. I spent much of the day planting seeds and sorting pots for growing veggies in what felt a far better environment than usual.

Plus, as it has rained in the night, when we went for a walk that morning the trees outside had dropped their white pollen, so it was like I had a layer of natures confetti at my doorstep, all down the road and at the park instead. Nature celebrated quietly with me.💜



And... for some reason, I still find the date of my brain surgery, my cranioversary, more of a celebration of still living than my birthday. Maybe as not many have a cranioversary day, or a second chance at life, it's a bit more special?







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Saturday, 4 April 2020

Comparing Recovery Isolation & Corona

We are now almost 3 weeks into being isolated at home. My husband and I both started feeling ill on 16th March, spent the next day in bed. No it wasn't romantic, we both were feeling full of flu aches, with temperature, headache, nausea, dizziness, fatigue and me constantly coughing.

Two or three days later our two older children then started feeling ill, mainly with headaches, body aches and a temperature, so I had to try and get drinks for everyone, cook dinner etc while really not feeling up to it. I decided then that having a brain tumour was actually an advantage as it meant I was already used to cooking and doing chores when I felt dizzy and fatigued with more than a bit of brain fog! 🤔😬

A few days into our illness, the UK went into lock-down, so we couldn't go out anymore anyway. 
My husband was basically ill in bed, or the last few days dragged into the sun lounger in the garden to get some vitamin D, for 9 days. It took us both about 2 weeks to even start to feel normal again and cook without feeling totally exhausted after, even though we then lost our sense or taste and smell and still felt tired. 

At some point, or two, my husband complained about how slowly he was recovering, how fatigued he still felt, and how slow his brain was working... each time I laughed! I know I shouldn't but I did say to him, "Now do you understand?"

Almost 3 weeks later we are still a bit more fatigued than usual, I'm still coughing but otherwise things are back to 'normal'. Whatever that is now... 🤔

I know I have read someone else talking about there not being much difference being isolated after brain injury to Corona lock-down a couple of weeks ago, but now we have had 3 weeks of only going out twice to get food and I wonder ... 

Is getting over brain surgery any different to this forced isolation? 



The only more negative things now is it takes me ages to get a shopping slot online and it's not even guaranteed I will get one, half the products I want are out of stock, food costs me more money, some of the places I shop from are closed, or only open for short periods, and post is taking ages. I also can't go to visit my parents and the garden centre is closed. I am also missing my weekend escapes of going to my husband's gigs. 

It's also the same in that once again my family have no income. Last time it was as my self employed husband had to look after me, this time as all his work has been cancelled. We are used to living on tax credits. We have dealt with it before, we will do so again 💜 

On the positive side... I only felt ill for a week. I was able to walk the dog again after 9 days not 90. We have been able to tidy garden, plant seeds - all nicely growing me veggies, sort house, finish off building a recording studio for my son, put up shelves and make things and have even ordered paint to update the hallway. I have time to sort out and now need to list the 100s of books I want to sell. We have a pile of items to take to the tip or charity shops once they are open again.

And, most importantly, this time others (even those than have not been ill with Corona) UNDERSTAND how you are feeling. 




Isolated.


Thing is, 
I had already been forced to get used to it. 
Now its almost quite normal ...🤔😬





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Monday, 23 September 2019

Autumn Equinox

I don't find this time of the year easy.
It's starting to get cold and I am so not ready for it.
I want spring to start again and give me chance to enjoy a decent summer.
Several more months, please!

Of being able to go outside and feel the healing power of the sun whenever I need it.
To have that 'extra room' to the house, the room that's full of nature.
Plants, birds, bees and butterflies.
To feel connected to life.
To feel connected to ME...



...but the sun is getting cold.
The wind even colder.
The leaves are falling.
It feels like everything is falling apart again.
Having to hibernate until the spring returns.

Life is on hold again.

Today the night is as long as the day.
Tomorrow we will have more dark than light.
I'm so not ready.

I am stubbornly refusing to wear my trainers round the park, and continue to wear my flip flops, even with cold toes.
Crunching through the leaves on the ground.
Wearing a t-shirt and body-warmer, as I just don't want to admit I need a coat.
Appreciating every ray from the sun.

Once we would have harvested our crops for the winter.
But barely anything has grown in my garden this year.

It seems like my life.
Empty.

I feel I'm still needing to plant and grow, not to be held back by Winter.
The cold stopping so much.
I don't want to have to walk around with layers and fluffy jumpers.
I hate being bundled up.
Yet even then I'm always cold.
I hate the cold more.


So today I am struggling.

It's my son's birthday at the end of this month, but I know after that celebration the cold really hits.
I have three long months until December 21st when it's Solstice, the shortest day of the year.
And then another three until March, when I can finally feel some heat from the sun's rays again...
Part of me hibernates each year. 

I was born in Spring, 
I feel that's when life starts again.


After three and a half years, I finally feel like I am in control of my dizziness, my slightly wobbly balance and my head not feeling tight all the time. Enjoying the warmth.
Being able to exercise outside and feel healthier for the first time in years...
I am just about getting used to it.


But each winter since my surgery, I have felt my body stop improving - even get worse again.
The cold wind hurts my head.
The muscles go tight and pull.
The nerves feel the chill.
My head feels numb without even touching it.
I wobble more when I get cold.
My body contracted.
It feels healing stops.

Winter is tougher now than it ever was... 
...but I'll take it a day at a time. 
💜







Wednesday, 28 August 2019

Beaches and Castles

Last weekend was busy. We went to Littlehampton to see my aunt and family and have a bit of a break. 

We had a quick trip to the beach on Friday, and for the first time since last October I was back on a beach. 😊😍 Though this time it was 1000x better as I was bare footed and warm, instead of cold from the rain and wind. It was so calming, even if we weren't able to stay there for very long that evening.

On Saturday I went to Arundel castle with my husband and son to watch their battle reenactment event, as well as looking around the castle and climbing the keep. 

I have no idea how many tiny, narrow, curving steps we climbed, but I was very impressed with how much my balance and coordination had improved as many of these steps were extremely steep, irregular and worn - yet not once did I trip!





Believe me that after once not being able to do this (or even walk in a corridor without walking into walls, or generally bumping into people) - 
I was very appreciative that I could now do so. 




I also managed to climb to the top of the keep, take pictures and look down - without my legs going weak at the knees, wobbling or feeling sick! 😁 Again a very strange experience as I have never liked heights... I am the sort of person who can wobble standing on a chair as it's too high 😵 😂 Yet here I was several stories up, even on wooden plank flooring that I could see through, and not only did I feel fine I was able to take photos!😲



Although with this climb, and afterwards walking around the tents, up and down the slopes looking at the various stalls, I did feel a bit shattered. Yet I simultaneously also realised that it was about 30 degrees and everyone else wanted to sit in the shade too.😁 But I felt normal. For the first time in over 3 years I felt 'me' again. 💖

In fact I felt better than the 'fatigued normal' I had been used to from long before my op. As I never would have been able to do this for a few years before I knew a thing about the tumour...


💖


That evening I also managed to beat Roan at a game of pool, plus play (a newbie version) of table tennis for 10 minutes. I don't catch balls. I cannot coordinate. Yet I managed to hit it most of the time and even catch the ball in my left hand if I felt I couldn't hit it. 😲 I decided my left hand was far better at catching than my right side. Although I am right handed my tumour was in my right cerebellum which (unlike the rest of the brain) links to the right side of the body, and well - I have a gap or two in my brain. 😂

A couple of days later, and despite bank holiday traffic chaos trying to stop us getting a parking space, we were able to get back to park near the beach. We had decided to go to a boating lake where they had pedalos. It had seemed like a good idea until I realised how hard they were to actually pedal 😂 but clearly using the reclining bike at the local outside gym had helped as I managed our allocated 30 minutes with my legs only feeling slightly achy after! Even if we did occasionally let the boat float gently for a few seconds.



But.... I went on a boat!!! Me... on a boat. 😲😁 Yes it was on a lake and not the sea, but (again rather pathetically) I used to feel nauseous floating on a lilo in an empty swimming pool. 😂 Yet not once did I feel nausea or wobbly or anything. Just how much had my tumour unknowingly been affecting me for years?



After this we then went to the seafront, where to Roan's amazement, the tide was out. So there were several metres of sand to walk on, and a very shallow sea for quite a distance.
Putting my feet in the stones, sand and sea - just grounding in nature.

And the sun was gorgeous.

It actually felt like being on holiday. 

Bliss.💙💖💙💖💙





I need to do this more often. 
I need to feel nature. 
I crave the calm and the peace...

I so want to move from the constant reminder of having a brain tumour. 
Somewhere I can reconnect with the earth. 
Reconnect with me. 


💗





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