Mother’s Day Fallout

Dear Wolf

Its been a while since we had a chat about things. Mental health has taken prevalence over physical but I think both belong to you. You are the wolf that bites and the black dog that lurks. Mental health and physical health are linked.

Partly this is because mental health is physical. Maybe its nervous system damage or a chemical imbalance. Currently my diagnosis dances between ‘born with it’ and ‘bad experiences’. The old nature or nurture argument. It drives me mad that mental health is treated separately, but more on this another time.

What I really want to have is a little chat about that phrase ‘Its not surprising you’re feeling down with all that s going on’. Nope it really isn’t. Being limited and constrained feels unfair and chronic pain is simply torture.

Last Sunday was Mother’s Day, some say another hallmark day, I like just letting my mum know I’m grateful for her being my mum. But when you celebrate a group of people there’s always a whole group of people excluded. In this case women who are not mothers. My sister captured the feeling in her Instagram stories on the day…

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That shouldn’t be a problem, I hear you grumble, and generally it isn’t. It’s just sometimes it makes us feel sad to be left out. Sad to not have a choice in the first place. I don’t want to go into extensive detail. But diseases like Lupus are common in causing miscarriages, make for a high risk pregnancy and the meds we take are too strong. We are told fiercely by our doctors not to get pregnant. You can read a little more about it here.

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That’s the physical side and mentally it affects you too. I have an innate fear that I couldn’t care for a baby or child when I’m so exhausted all the time. I can’t even look after myself, let alone someone else. Also there’s a part of me which says ‘what if I pass it on’.

IMG_5143For me the most significant part of not being in the club are the questions from others. So I guess this post is a little get out clause for me. HAVING CHILDREN IS NOT A SIMPLE OPTION. And before you suggest giving up meds/ just doing it anyway/ not being so pessimistic/ tick tock time is running out/  when you’re better/ please believe me that these are things we’ve tried ver and over or run through in our heads.

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It just isn’t that simple and on top of the usual worries people have about money/ career/ relationships we just don’t have the choice. That is it really, as with all chronic illness it is being robbed of choice or options.

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So I’ll send my card and appreciate mums everywhere. I’ll ignore the targeted adverts about fertility or baby clothes. Pick my self up and keep on being me (with a little ache inside).

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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.

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Never


Part of me wishes we’d never met.

That we’d always been lone wolves and never a pack. 
Never swam and chased underwater or danced and laughed at our four left feet.
Never caught trains on adventures and driven for miles whilst playing silly games to make it pass by.
Never stood so proud of each other whilst watching girls on roller skates collide. 
Never hunted the magical potions created in bars. Two maraschinos please oh and an espresso martini.

Never created delights to feed each other and had kitchen meltdowns to match.

Never hidden from the world under duvets whilst eating mountains of pizza and ice cream just to be together.

Never thrown pizza off cliffs and shouted from balconies into the London night sky.

Never had ignored each other whilst drawn to screens or watched series upon series back to back whilst I asked too many questions.

Never have had mad making projects in which I had the idea and you made it happen. 

Never put dusty records on the record player and sat in our pants.
Never been humiliated by our daft dogs, taught them to swim or snuggled as four.
Never have enjoyed making fires inside and out. Never have foraged for food and dragged home tree limbs with guilty faces.

Never have made lemon meringue pie with all my heart but it’ll never be your mums.

Never have spent hours making and finding the perfect gift to make each other just to know how wanted we were.

Never have barbecued in the rain.

Never have put the world to rights with a shared intensity. Anger in our words for peace and a better place.

I’d never have thrown your shoes over the wall or teased you about your new clothes.

Never have held hands in the cinema and felt our hearts race at being side by side in the dark. 

Never have invented the film rule or searched endlessly for the tiny remote.

Never have shared Sunday mornings in bed as the closest time together.

If only we’d never met…

I wouldn’t have given you that hug at the gate thinking you still cared. 

Or woken up from the pills to hold your hand and look into your eyes for an answer to the pain I’d tried to take away.

In that moment I trusted you still and believed you cared and we connected. 

But all of the nevers were lies.