Some days are for warmth…

So today I woke up feeling pretty horrid. New meds are making me sleep for nearly 10 hours a night, and then groggy the next day. I guess this beats the 4 hours average I’ve had for the past few months.

Processed with VSCO with f2 preset

I’ve begun a new kinder morning routine. It mainly is about not rushing:

Wake Up | Check my journal (not phone) | Feed and let the dogs out | Enjoy coffee / breakfast | Put myself first with yoga or mindfulness | Get ready | Walk the dogs | Check the post | Plan meals and actions for the day

In today’s journal I had scheduled a Weight Watchers meeting, crafts with a friend, followed by a show at the theatre. After sleeping past the Weight Watchers meeting time, and walking the dogs, falling over in the mud, and nearly passing out I knew I wasn’t up to much. In the panic of pain and fatigue I cancelled everything.

Then I realised I did really want to see people and that I needed company and inspiration. I don’t know about you but I am constantly in battle with myself for shared time and alone time? So today I back tracked and rewrote the day. I’m sticking to 3 things at the moment so my new plan was:

  • Drive to the Cowshed to pick up craft materials
  • Meet with Helen, to eat her home made soup and chat and maybe craft
  • Make chickpea blondies

So I did all these things instead of a disaster it was wonderful. Driving through the autumn landscape in no hurry meant seeing the countryside in all it’s glory. Then getting home it’s all warm and cosy and the dogs were waiting.

Helen arrived with a box full of crafts, and her delicious homemade squash soup (I’ll endeavour to get the recipe). We chatted about life, and ideas, and drank coffee. We both, being spoonies, decide to keep the craft simple and make our own ‘advent calendars’. It was Helen’s idea as a way to be kind to ourselves. I provided the labels to write them on and we both came up with ideas for an action a day that would be treating or nourishing ourselves.

Thats all there is to it really. We wrote on luggage labels and decorated them with stickers. I ended up doing 31 to take me all the way to New Year, and have a whole month of adventures. The idea is to pick one each day to do. If it is completely impossible with your schedule we decided we would be allowed to swap one but you should then make time to fit in the discarded one so all the tasks are at least attempted throughout the month. I’ve decided to do mine with the food bank advent idea. In this I put an item of food into a box each day to donate to the local food bank.

Finally I made ‘chickpea blondies’ as a quick sweet treat, they sound odd but they are amazing. I found the recipe here. They are great for lazy days and you literally shove everything in the blender and bake. Oh and then eat of course, still warm from the pan with oozing bitter chocolate.

This slideshow requires JavaScript.

What do you do to stay warm once the weather turns colder and the nights are shorter?

 

 

The Art of Slow

07a52afd572c73604d721e8d9668dcb6

Well I’ve chatted a lot about the negativity of chronic illness, I’ve also searched hard for the positive.

Recently I’ve managed to find myself in crisis, one of those moments when it never rains but pours. I made a list of ‘losts’:

  • My health
  • My work
  • My heart
  • My home

9d13b4768b4daac39c1d36aeb5f92aee

Pretty huge things and I don’t have much left. But to reexamine the list, stop and breathe has truly been insightful. Despite my stubbornness I’ve been forced to halt and reassess.

  • My health  I do less things and a slower pace. These are things that I enjoy.
  • My work I transfer my skills to find something that fits with the above. Work is about love not money.
  • My heart It’s about time I stop letting others destroy me and love myself. In turn I make room for good people.
  • My home I simplify my home and living to make it work for me and love everything within it

So I welcoming ‘The Art Of Slow’ whatever this means! I’m discovering it day by day as a personal journey. Adapting to the seasons and the needs of each day as it comes. Savouring moments and building them into something special.

To start off I’m going to do a few of these 25 suggestions to savour November

Thank you chronic illness, you gave me the gift of slow…

 

Somedays

Somedays the world is an ugly place. I know this morning was not helped by the anxiety of returning to England and the early start. Maybe I wore the wrong eyes for viewing it? It was a catalogue of bad sights, smells and tastes.

It started with my bag (too heavy) and a very fast bus ride through Barcelona’s packed streets (the driver was a the love child of Jesus and Otto Mann). Add a dash of concrete pounding and avoiding last night’s dried vomit slicks (the pigeons were enjoying it). Finally to the bus,  despite there being 3 staff, they watched and tutted as both me and my sister (both disabled) couldn’t get my bags in. My hands, which shake all the time now, couldn’t grasp the thin paper ticket (don’t cry).

In the airport I waited by the mobility help kiosk (noted there are no chairs). I watched a man vomiting into a bin for 10 minutes before the cheery Xavi picked me up in a wheelchair (I always book ahead now for mobility and I always ask the name of the person assisting me). When you get assistance at airport you end up in all sorts of corridors and pens waiting, seeing behind the scenes. Once over the embarrassment ( I still get weirded out by crutches and wheelchairs) you get taken in buggies and strange contraptions to get you on the plane. You forget all the normal airport stuff but find yourself saying ‘thank you’ and ‘sorry’ a lot.

I watched amused as the people fight to get ahead in the plane queue. Almost slinking up the walls to get closer to the front. Then our gate changed and everyone made a mad dash across the concourse. The shoal was so choreographed any dancer in a ensemble would be envious. I trailed behind with the cabin crew, no rush, after all we’re all getting on exactly the same plane and our seats are already allocated. The dance continues as people who pay extra can get to the front of the same queue and other frantically sort through bags after bring too many or ones too large. The panic continues on the plane like a game of musical chairs. Last one seated is off,  I guess that’ll be me then (jokes).

Now travelling does something to my head, it makes me time travel to the past or future. I’m terrible at it. I fret and tremble recalling past pains. I nauseate over details of conversations not yet had. I caught myself in the moment of full anxiety (I’m good at catching thoughts by now). I realised what I was doing and I can only describe it as running down a dark alley with doors that open to the past and the future. You witness times of joy and pain and live events that haven’t happened yet (and probably never will). The alley narrows and it gets harder and harder to turn back. As you are squeezed between the ever narrowing walls you realise you’re stuck. It’s so tight and dark you can only see and believe what your brain is showing you. I held back the tears and swallowed the anger. I realised my brain was back in the place of no hope.

By the time I was in my plane seat I’d died a dozen times in my head. To write it down seems ridiculous. As I was drawn back into the real world again I became aware of a boy behind me. He was possibly 8 and making some curious noises. A sort of cry mixed with excitement then outbursts of ‘the plane is going to go. Suddenly the couple behind the family announced the wanted to be moved. This was loud enough for most of the plane to hear. Most people politely stayed looking at their phones but I’m not very good at that. I swivelled round to see a family with children of different ages. This boy clearly had learning difficulties and was anxious at flying. It came out of him in little bursts like he didn’t know whether this was a terrifying place or the most thrilling ride. He hadn’t done anything wrong, he just said out loud the feelings that we probably all were thinking. I watched as the boy’s mother turned in natural defence of her child. ‘Are you asking to move because of my son?’ she asked half vicious in defence and half shocked beyond belief. ‘Yes’ the couple announced to the plane, ‘we are moving because of your son.’ Every part of me wanted to jump in fierce and wild to stop the pain.

I bit my tongue and caught the mum’s eye, I offered her my row of seats in front away from the couple. The cabin crew swept in and expertly moved the couple away to the back of the plane. The mother burst in to tears. The cabin crew tried to placate them both by offering sweets and a ‘trip to the flight deck’. These frantic gestures were lost so they listened whilst the family explained that the couple had been discriminatory and said appalling things about their son. I felt for the mother in that moment, she had tried desperately to shield her child from the horrible hatred. She was in a state of pure panic. How could anyone do this just because the child made a sound or spoke in a way that is ‘abnormal’ (I personally found him a joy)? Later in the journey I turned and caught the mother’s eye. I wanted to say how appalled I was but just mouthed ‘are you ok?’. She whispered back a thank you and smiled. I didn’t want to save her, but just let her know she wasn’t alone and others were with her.

When you enter the world slightly outside of the normal realm you see how difficult and unforgiving the world can be. My sister has talked at length on her blog about grieving (it’s worth a read and is here ). Its not always about the death of a person but sometimes the death of something else, like your expectations or the life you thought you had. I know I have been experiencing extreme grief as part of my relationship breakdown. With this has come a whole lot more. I’ve experienced the death of my life as I know it. I am unable to work, looking at a future on benefits and no longer able to do all the things I once could. Auto Immune has irreparably robbed my life and I sometimes grieve for what I once had.

So forgive me if I get sad from time to time. I’m trying more than you know to keep my shit together. In amongst these moments I cling on to the small acts of kindness we are all capable of performing. Smile at a stranger or ask someones name, it costs nothing but a little bravery. None of us know what path the other is treading, what came before and is to come in the future. Maybe the couple who had asked to move had been anxious flyers or something else had happened that day. Their actions weren’t the best way of behaving, but we all make mistakes right?

I will continue to fight tis anxiety daemon, its not a linear journey and I’ll bounce around. I’ll also continue to to fight the prejudice and invisible illness in the best way I can, with compassion and kindness. I’m back to start all over again.

I saw this today, which says a lot of my ramblings far more succinctly.

Love, and kindness to you all with the most open of hearts.

fullsizerender

 

 

Bubble

When I started to write a post about mental health the other day I deviated. I was supposed to write about mental health in general and ended up just pouring my heart onto the page. So back to the original post…

I have many wonderful and talented friends who my life crosses with for fun, creatively and also with work. A few years ago a former student of mine introduced me to Katie, as we both had Lupus in common (I guess the disease is good for something). Immediately we got it, the whole chronic illness thing and everything that comes with it. To make it even better she’s a fellow creative soul.

We collaborated a few times in our quest for invisible illness advocacy and creative therapy. Over the past year Katie has been away studying for her screen writing  MA. We’ve missed having her around but the best thing is that she’s been growing her amazing talent. I know it’s not been easy with battling the daily illness thing and the lack of support she’s had. That just makes it more inspirational that she wrote and directed an amazing short film, Bubble.

14650207_10210700577812337_1731420910408868808_n

In Bubble we meet Erica and Paul, a couple struggling. ‘Erica’s desperate to burst Paul out of his depression, but on the first day he takes medication, she pushes too hard.’ The film is not really about the depression or how it manifests. It is about a couple and how their relationship copes with the the effects of depression.

Katie explains:

‘The representation of Depression in modern media is so often the sad person, who takes medication, and is sad. The human experience of a mental health problem, for both the sufferer and loved ones observing, is much more complex.

When spending long periods of time with a loved one experiencing Depression, I realised I had no idea how to help, or how to act around him when a black mood descended. I realised I was making things worse, but had no guidance on how else to be. It was then that I realised that there are no examples of stories or films that I knew of which exemplified what I should or could do for my loved one who was suffering so clearly but so internally.

Bubble endeavours to be one such example.’

I knew a little about what had inspired her and she told me a little more :

‘Two things really. Firstly I watched other short films and wanted to have a go to see what I could manage. And secondly I struggled to know how I could help friends  with their depression, so wanted to explore that.’

The film is a snapshot into understanding mental health from all angles. It cleverly puts emphasis on the couple rather than the illness. I think this comes from Katie’s innate understanding of invisible illnesses of all kind. After all we all live with, and experience the the illness someone has when we are close and care. We all learn to cope with it and don’t always get everything right. Invisible illness needs to be talked about, accepted and challenged.

Ohh and I almost forget to mention it, Bubble is up for an award. It’s part of the  Nottingham International Microfilm Festival Audience Award. You can watch and vote for it here:

We could all be a little kinder…

I came across this list earlier on Buzzfeed

download

I love the fact it just asks us to spend a little time on ourselves before we hit crisis. I wish I could take my own advice. Slowly, slowly I’m changing my routine to include breathing and positivity. Todays tasks were to make candles, get the dogs back and watch Bake Off. Tick, tick and almost tick (it’s on in 10 minutes).

A lot of chronic illness comes with a spoonful of guilt. We let so many other areas of our lives slip so therefore believe we don’t deserve self care and kindness if we have cancelled a meeting or been late on an assignment. I know I’ve posted this before but it is so true: You can’t pour from an empty cup. Take care of yourself first.

So I’d be interested to know what you do to take care of yourself?

P.S. Today I’m grateful for:

  1. The garden and it’s ability to keep on growing no matter what
  2. Rose – In plant form, scent or lemonade.
  3. The crisis team who are keeping me afloat

 

 

 

Colour

I’m at my sister’s in Bristol for a much needed mini break as part of ‘being kind to myself’. I’ve slotted into her family life and am drifting along finding it difficult to switch off. 
On the first evening we went swimming despite my crippling fatigue. I’m glad I did as 20 minutes splashing around in water was a respite from overthinking and I felt like I’d taken a step towards a new start.

On Friday daytime I mostly napped. Absolutely shattered and emotionally drained. I’ve been trying not to do this because of the awful insomnia, but this time I couldn’t stop.

This recharge meant in the afternoon I could go out with the boys and into the centre.

Bristol Biennial Is in full swing so our first stop was Liz West’s exhibition Our Colour at the Pithay.  

As you can see we loved it. It’s basically the 4th floor of a disused office building bathed in coloured lights to make the full rainbow spectrum. There’s nothing more to it which makes it strangely wonderful. We chose to sit in different parts to see how it made us feel. I loved watching people of all ages react to the colour zones.

What was most interesting was seeing where people were drawn. Most people seemed to congregate in the extremes. Calm and laying down in the purple at one end, or bathed in neon pink at the other whilst standing and taking it all in.  

When we left we chatted about how good it is when you can experience installations and art freely. There’s no constraints in these spaces and no rules on how to act like in traditional galleries and arts events. Theo had the freedom to roam and react and we thought nothing of lying flat on the floor to take pictures. 
It was like full on colour therapy for the soul and made me realise one part of myself. I am a huge seeker of beauty in the world and love to experience visual art. It makes me feel curious and excited and feeds me energy. 
To take part in this I needed my spoons. But by taking out the strains of work I was free to enjoy and explore. My goal for this month will be to seek more beauty without the guilt of not working! 

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!

14192571_1167441439995378_9200289525648559145_n

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.

 

 

 

Goodbye 2015…

…and a list of ‘I can’ts’.

A lot of living with Chronic illness is about learning to say no. This is all well and good, but I can’t help thinking there must be a way to say ‘I can’. To live within boundaries and spoons but still be able to do stuff.

Today I felt the pressure of New Years and the forced fun. I imagined getting dressed and going out, drinking cocktails and staying up till the early hours. Because that’s what you’re supposed to do right? And everyone else is doing it. Or are they? When I woke up this morning I was shaking, my whole being ached and everything was swollen and I knew the plans just wouldn’t happen. So we changed them, the girls are bringing over takeout and then slipping off to celebrate leaving me with a duvet and my pjs. Instead of thinking I’ve missed out I can see that I’m just doing it differently thanks to great friends. It’s OK to think you’ve missed out but check and see if you really have. After speaking to people I realised that so may others are doing the same! Do what makes you happy not what you think you should do.

Earlier on today I went for a walk, went too far, got stuck in a muddy field. and Paul had to pull me out. Again I had gone too far, got frustrated and shed a little tear over what I can’t do. On reflection the good thing was that I was able to walk as far as I did and chat to Paul along the way, laugh at being stuck in the mud and the puppy trying to chase birds. Being outdoors is always so healing whether it is just for a short time. So what if I can’t walk as far or as fast, I can walk and enjoy the outdoors that is what matters. The winter skies, crows cawing and being outdoors makes me happy.

download

I saw a post earlier that said make a list of what you do every day, then make a list of what you love doing and compare them. I already know that having chronic illness has slowed me down and made me savour the small stuff. When you only have a few spoons spend them on those you love and that list of loved things.

il_570xN.884082723_hk7r

So my New Years Resolutions are not to take things away but to add more in!

  1. Dates with the boy for my heart
  2. 10 stretches everyday for my body
  3. A meal plan each week for our budget
  4. Oh and my dream of riding my bike again

Happy New Year all, remember do what makes you happy.