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.

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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

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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

 

 

 

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!

Christmas Crazy

Someone must have seen me shopping earlier.

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I went shopping for cheese at our local farm shop and the queue was around the building. It’s a funny place to shop, great produce, but the clientele all believe they are royalty and think nothing of taking a limb off with their trolley if you’re in the way of their sourdough.To go there on the week before Christmas I must have been mad.

On the way in I found a basket (thought about the agony of carrying it) and headed to the cheese counter. I stood for ages waiting politely and being ignored. I could feel my knees shaking and my lower back begin to protest. I put down the basket and leant on the cool glass for support. How do you tell people you cannot stand for long and that you are hoping that rumble in your tummy isn’t IBS? Just keep smiling. After eventually grabbing the attention of an assistant myself and the lovely lady next to me were told that despite waiting 20 minutes we’d have to join the queue they had started at the other end of the counter. All along they’d been serving at random, theres never a queue there and no sign. Me and my now partner protested. Why hadn’t they told us this 20 minutes ago? I got served, with the coldest, rudest service ever. ‘don’t worry’, said the lady next to me ‘that ones always got an edge’ she meant the assistant not the pungent cheese.

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So cheese in basket I turned to join the queue that snaked around the entire building, my heart sank. People were being crafty and joining the queue as soon as they entered the shop, leaving one person waiting and one person whizzing around collecting items. I was on my own. I considered asking the nice lady at the checkouts if I could sit on the floor with my basket and wait the same as everyone else. By now my hands were shaking noticeably, which makes me look like I need a drink a bit too much. The thought of explaining was just too much. If only we had a blue badge on our person to explain that we cannot stand for long periods or may have to leave urgently. I don’t mind waiting my turn but I cannot stand up!

So I put on my best smile and made friends with the people in the queue. The family in front were adorable and straight out of a post from ‘overheard in Waitrose’. ‘Please mummy, may I have the Panettone?’ We all giggled as they compared it to Morrisons. My faves though were the family who had been beside me at the cheese counter. The gentleman wore a sporting navy bow tie and the woman loved my basket technique of put it on the floor and move it with your feet. In fact I started a trend and soon the whole queue was doing it!

Oh Spoonie Problems!

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

Bed Days Sofa Days

urbanoutfitters.com
urbanoutfitters.com

Bed and sofa days are a serious feature of Spoonie life. So I thought I’d put some things together to help survive them. I was inspired by a Buzzfeed list of all things! I do love a good list and this one was titled: 19 Insanely Cozy Accessories That Will Make You Never Want To Leave Your Bed

So it got me thinking, as a bed expert, what are the top things you recommend for a bed day? So I asked some of my fellow spoonies, here’s what they said:

urbanoutfitters.com
urbanoutfitters.com

Zoe: “Clean PJs, dreadful rom com films (friends call it the heart break hotel collection), colouring in book. Dark days, planning small adventures for the good days! Baking, I find this really therapeutic (not a great combo with steroids!). Crafting, small projects that can be finished easily. Going to a tea shop with good friends and family. Just a small outing to make me feel like I have achieved something with my day, for me that’s important! “

Zoe works in the Arts and is a Myositis fighter. To find out more visit www.myositis.org.uk
Follow Zoe on Instagram

Kim Joonsoo / Via enpundit.com
Kim Joonsoo / Via enpundit.com

Katie: “An extra duvet as a pillow always makes bed days more enjoyable for me. And keeping an array of boxes of cereal by the bed! Cereal helps everything”

Katie is currently studying for her MA in screen writing, works on and off with us a Wide Eyed Theatre, is a talented poet, and makes costumes. All this and she lives with Lupus plus overlaps.

urbanoutfitters.com
urbanoutfitters.com

Helen: “Fave teddy bears. Little book of inspiration / fave quotes. My mini-craft box with ‘easy’ / children’s activities in. Clean snugly blanket. Radio 4 iPlayer tuned to satire”

Helen is a trained Reflexologist and knows all about the art of relaxation and understands chronic pain. This is her page.

forever21.com
forever21.com

Nick: “A onesie, Netflix and a Tardis stress ball usually does the trick. I always try and write as well…. I’ve got a book of writing stimuli and I try and use that to take my mind elsewhere, to varying success. And my cats are very good for those sorts of days – boundless energy that you can’t help but be drawn into!”

Nick is an actor, performer, writer and facilitator. His webpage is here.

modcloth.com
modcloth.com

Pete: “Giant bean bags are really good for sitting yourself up. Midget gems. Aimlessly browsing Instagram. Usually when I’m having a bad day I can’t really breathe much so good music or good films rather than just staring into middle distance is always good… Apparently a strong coffee is good for my lungs which is as much excuse as I need there (just don’t tell my cardiologist!). Oh yeah, forgot to mention cats are excellent company in the small hours

Pete is an ace photographer and his work can be viewed here. Or follow Pete on Instagram.

urbanoutfitters.com
urbanoutfitters.com

Cassy: Endless cat memes. Clean duvet/blanket. Whatever food you fancy. Back to back episodes of American crime dramas. The Buddify meditation app. Browsing on Etsy. Bubble baths. Podcasts. Fluffy socks.

Cassy is a creative blogger and her blog provides an excellent distraction on bed days. You can read her blog here. Or follow Cassy on Instagram. She’s a busy bee and a super fighter of chronic illness.

urbanoutfitters.com
urbanoutfitters.com

And last but not least my spoonie sister Sarie: drawing strange things (when I can), youtube video binging (tutorials and vlogs), A duvet and extra comfy pillows, Clean bed sheets and pyjamas, Cake and tea, Comfort food like beans on toast, Hot water bottles, fresh air if i can get it, Pain killers, doggy hugs, blog writing, friend chatting, listening to woman’s hour or good podcasts, sketchbooking, list writing, cooking good food, heat packs, being surrounded with good objects, not feeling guilty (trying to remind myself of things- again list making is good for this), enjoying small tiny bits and remembering not to compare my self and my achievements/non achievements to others. Remembering that good enough is another persons great. Reading good things (love rainbow rowell & sarra manning books). More pet hugs!

Sarie lives in Barcelona where she is an illustrator and designer. Her webpage is here

urbanoutfitters.com
urbanoutfitters.com

So the top 5 bed day essentials seem to be…

  1. Clean, fresh comfy duvets with lots of snuggling potential
  2. Snacks that are good for you and easily on hand
  3. Distracting your brain whether it be through movies, books or activities or keeping creative with crafts, baking and writing, whatever you can manage.
  4. Treating yourself. If that means a nice cup of tea and some chocolate or a super bubbly bath. Guilt free as you need it
  5. Pets and fellow Spoonies: for hugs, moans, advice and to listen

 

Thanks to all my lovely, talented and courageous friends.

Please leave a comment if you have further suggestions.