Never stop

 Today’s post is more of a diary entry. It’s a big test day to try to get back to some kind of normality and spend time on my own. It began with a sleep over at my dear friend Beth’s house where I was spoiled by having dinner cooked, playing with all the toys and coffee in bed! 

It was followed by a meeting at the council to get my benefits in place. Easy peasy, and followed up with a quick coffee and toast before returning home. I made a few candles for an order I have on. I was exhausted already so I napped and watched crap TV and tried the anxiety meds in the daytime. I usually take them at night to help me sleep so this was another test.

The next thing I knew I was woken up to Emma knocking on the door. She whisked me away to the next meeting with the community mental health team. A bit of a waste of time in terms of help and info but at least I know where it is! Plus I got to spend time with Emma in the car chatting (one of my favourite things).

So home again to a bath, dinner and more candles. I’ve started to read Marie Kondo’s The Life-Changing Magic of Tidying. Not sure what to think yet as its a lot about how fantastic the technique is but little about the actual doing, I love the idea of being ruthless though. Purge here I come. 


I’ve also been keeping a gratitude diary. The three things I’m grateful for today are:

  1. Friends as they have literally saved my life and continue to make me smile
  2. Duvets
  3. My cat ‘Little Bear’ who has been at my side all day

Crisis

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…

Let’s Pretend…

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...

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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.

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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 4d2eef3c2201ad1d82e0ce3043a006c8to 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 4db5a8f3a5b0b85573115a9dc7cfdd59treating 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 39a826434d0482e19e4b342e6b265ec9with 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 0ae880eb77832884e8a19c3e3f357953certainly 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 81576b699d8a8a514f8f9c01113dfb10especially 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.

e5c9e117e8a4050b05a4c1d031710423Since being really young I also used to fantasise about being part of a conspiracy. I used to lie on my back and l9979724392b6d1da5b80638e18b720c4ook 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:

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Goodbye…

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 […]

via Goodbye — Eyes + Words

Parenting Yourself

So the last few weeks have been living in crisis. Caused by pain, mental health, relationships, work and income. All at once, in one big lump. Pow, taken out by the world!

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3 emergency hospital trips, 1 breakdown, 1 job lost, 1 relationship ended… It’s so easy to get swallowed into the negative and not see the positive. But the positive moments have been about the friends I have and love dearly.

What it has done is made for a very interesting discussions about life. It’s been useful to surround myself wth my friends and those who have been in the same place.

Today’s post is dedicated to Helen who has been amazing. Having been through the same shit she’s been one of the most resilient people I know. Oh and she’s a reflexologist too. I cannot recommend her enough for any kind of healing!

12068846_939860746086783_403464652320274183_oHer Facebook is here, and website is here

A few of her wise words include:

“So the world currently feels like a very scary, lonely & overwhelming place yeah. It’s all shit, there’s no-one you can rely on and you’ve just not got any more energy to keep fighting it all 😭

I’m not in your head but I can recognise it: I mean, when even your own fucking body seems to hate you what’s the point eh FFS!

But there is a point. It’s horrific right now & you prob can’t see any light.  Let me reassure you, there is a light. It’s called resilience, a strength you didn’t know you had, friends & vague contacts that will step up & help you find a path where you didn’t know there was one. It’s chaos, but out of the storm there’s new horizons, ones you’d never dreamt of before.

I’m not saying it’s easy, that’d be a lie. Trust me Vicki, it’s an ending but also a new beginning. It hurts like fuck. That hurt eventually turns into the determination your new self will rely on. Among my closest friends we no longer call it a ‘breakdown’ but a ‘breakthrough’ because in order to be true to ourselves the pain has to be faced & the old patterns need to be broken.

People don’t understand what it’s like living in pain every damn day. For doing that in itself , AND continuing to work as long as you have, you have a strength that most do not. Be proud you’ve made it this far. And with or without a bloke, your journey is only just beginning.”

These words were my solace in my darkest moment. They became a mantra to cling to. I love the idea that when in crisis experiencing a breakthrough rather than a breakdown. Maybe my list should look like this:

3 emergency hospital trips signs that I need to ask for help with my conditions, 1 breakdown breakthrough, 1 job lost assessment of my career, 1 relationship ended  6 close friendships formed and countless true friendships beginning … It’s so easy to get swallowed into the negative and not see the positive. But the positive moments have been about the friends I have and love dearly.

Today in our feet pampering session we discussed parenting. She suggested writing down all the things we want from our parents (theoretical ones if you are reading this mum and dad). Then you cross out parents and make it a list for how you want to treat your self. So here is goes…

I want my parents to be I want myself to be:

  • Supportive
  • Non judgemental
  • Not to know best for me but accept I know this
  • Kind
  • To listen without an answer
  • At the end of the phone
  • Strong
  • Not pull me into their dramas!
  • Not to take on my illness as something they’ve done or passed on
  • Trust me

Well that was a lot of writing and self led therapy for one day, I’m off to bake a cake!

Limbo | Some words about this adventurer

There’s a creeping sickness inside my chest.

There’s a living ball of weeds that have a grip,

slowly they snake their way through my ribs,

worming their way into my fractured heart.

It’s in my head but it’s real nauseating pain

that races down my arms till they’ve been hijacked.

Slowly they consume me before spitting the remains out

like the fragments of vomit after being sick for hours.

My heart thuds a sickening acid beat,

conjuring a heat that rises and I give in.

 

Then I forget for a moment and live,

but living becomes a limbo, a holding place.

I’m split in two, too scared to be alone,

too overwhelmed to sit with you and open my mouth.

A warrior and a victim, resilient and weak,

I’m frightened beyond belief.

I’m ‘all about me’ it seems, and irritated by the world.

Everything feels like walking through an endless desert at night,

I can’t see beyond my hands which are so cold and alone

I’m thirsty and need shelter but cannot find the right place.

Your company is welcome but never the one.

No one is the one thing I want.

 

I want to close my eyes to the night’s sky

I want to join the stars and become part of the nothing

I want to stop fighting and trying

I just want rest.

It’s there within reach, within a plastic packet,

It’s just a swallow away from peace.

It’s a wild and dangerous place

full of beasts that make me alive.

 

It’s like a thief came and took my OK, my safety, and my future.

I feel numb and uninteresting to the people around me,

kind people I don’t have the words for.

I feel like I lack a purpose,

I’ve been cut adrift from everything I thought I was,

I’m a tiny, leaky row boat on an inky ocean.

People believed this vessel was a ship,

It never was, it was just a leaky tub that was clinging on.

 

There is a beauty out there in the endless starry sky,

but at the moment it’s just out of reach.

I’ll find my map and telescope soon but please hold in there with me,

I’m just on a break from the adventure.

I’m doing all the emotions at groundbreaking speed,

and someone forgot to install the emergency stop.

I won’t make you promises as I have none to give

but I may surprise you all.

 

 

 

It’s funny when things crop up…

… just as you needed them.

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https://www.behance.net/gallery/Hunger-is-a-monster/12330761

I’m having a terrible time mentally, physically and emotionally at the moment. I just don’t seem to be able to hold things together.

It’s having a real impact on every area of my life including work, income and relationships.

Never has the autoimmune community of various groups meant so much. Just hearing and chatting with others in the same place is so important.

For those who are looking for support or like minded people here are some links:

Spoons and hugs x