The Dangers of “That’s life!”

Today is World Mental Health Day. When we have to recognise a potentially fragile and neglected part of ourselves or someone we love, or barely know at all, and promise to do better at nurturing and protecting ourselves because we agree that we deserve it.

This is the exact thing I swore to work on this year. To be honest and raw and to let myself feel my own strength and feel deserving of each happiness.

It can be so hard knowing who to trust with the everchanging state of our mental health, especially when we’re not to grips with it ourselves.

Even now, all these months later, I can barely get past the recognition of “I don’t feel well.”

They are just 4 words. And yet they are just 2 words out there that I have heard with alarming frequency recently. Two words that can keep me from ever being honest with you, when I might most need your help. They stop me trusting you.

“That’s life.”

Many things Are. Life.

Births. Marital squabbles. Your Amazon parcel being delivered 10 doors down. The car breaking down.

All normal things I accept are happening to all of us every day.

But please, I beg you, never brush off anybody’s concerns with a “That’s life.”

Because if I am feeling brave enough to share with you the worries and fear that keep me from sleeping, or feeling like a fully functioning human, then that fear, it is consuming me. I am losing a battle with darkness and I cannot feel the ground under my feet. I am lost and frightened. I am reaching out to you, for a hand to steady me.

It may be life. But in uttering a word of my concerns, I am acknowledging I cannot cope alone. “That’s life” dismisses the nerve I had to work up and worse, it leaves me alone still in that darkness.

Rain makes puddles in my kitchen. That’s life.

Except I’m now not safe in my own home. Which means now that nowhere feels safe and I live in constant fear of slipping or falling, because so long as it’s wet outside, it can’t be fixed.

CP has finally claimed my ability to work. I accept I am made too tired to carry on. That’s life.

Except without my salary, I don’t know if we’ll be able to fix the broken bathroom floor I worry about tripping on, or fixing our patched up electrics.

Worse, without my salary, I don’t know if we’ll be able to afford a much longed for second child.

That’s life right?

Except being a mother has given me the only peace this world, this body has allowed me. It is the only way I hav been able to make sense of myself or stand the pain I live with everyday.

If I cannot do it again, I will be heartbroken and though he’ll never say, so will the man I love more than anything.

It may be life, but it’s so unbearably hard. I would never presume to understand the life any one person lives. We will have experiences in common by virtue of human nature.

But it is so dangerous to presume that this life, anybody’s life is bearable everyday. It is not simply made so because “That’s life.”

My best friend

The loneliness of this life is real baby girl. I know a lot of mums feel this way, like they lose their identity a bit with their tiny human needing them more than anyone before.

Pause it there. It is so crucially important to me that you always know that I do not feel this way because I am a mum. Being your mum, Squidgelet, has been a transformation for me. You are my anchor, the sense of purpose I didn’t know I was missing before I met you.

My sense of identity has been eroded by CP. Fatigue is too fluffy a term for it. It just makes me think of damsels in distress, fanning their brow dramatically til the cavlry rocks up

You’re my cavalry Squidge.

When I was glancing wistfully at the well groomed mums at playgroup, wishing they’d be my friends, like I might be one of them (that is, capable of drinking gin AND holding a conversation circa 8pm) you snapped me out of it by wanting to build castles.

I feel so guilty. Like, all the time. It’s as though no matter what, I’ll never feel I’m good enough for you because I’m always so depleted.

This morning was a shouty one. God knows what next door thought of me as I tried to push you out into the rain. You were crying then but I just wanted to get to the doctors on time.

You walked so well. No complaints, so road aware, so helpful. I have so much love for you Squidgelet and this morning I didn’t show it. I’m sorry.

We’ve played all day. Soft play, gymnastics and even a sneaky chocolate biscuit in between for being such a rockstar – right down to nagging Mummy like your Granny used to, telling me to stand up straight to save my back ache.

I love so much chatting away to you as we make our inevitable trip to Morrison’s so you can push a little trolley. There are always so many people in the supermarket and I don’t need anyone but you. You make me laugh as we sing questions to each other or you burst out in a new rendition of Big Girls Don’t Cry. I played you Frankie Valli when you were in my tummy and I love so much that one of my loves stuck with you.

I am so proud that even at a time of your life when you’re wrangling with your own emotions, you always remember to look after me – holding my hand or picking up your toys so I don’t fall.

Being able to spend any time with you feeds my soul and brings me happiness I cannot put into words. It helps me feel right in a world where I just feel so overwhelmed and out of place. You give me that, just by existing. You amaze me.

Life is tough for Mummy right now which means it’s hard on you and Daddy too.

But more and more, I realise now, it doesn’t matter. Because whatever comes at us, you’ve already told me… “We’ll do it together”.

And that, darling girl, is truly all I need. Thank you.

My little cheerleader

It feels so strange to say it, but this last week or so, I have been on top of the world. Tired, but accomplished and oh so proud.

Knowing that I struggle and knowing that I don’t want to hide forever, I have taught Squidgelet to say 2 phrases on demand:

“Take your time Mummy’

&

“Come on Mummy, you can do it!”

I love so much that she’s so willing to support me in this way because, whilst I confess I am easily overwhelmed, she remains the reason I do everything and her words calm and focus me so much.

We are home alone today and I was determined not to waste it slobbed out in front of Youtube. Despite how much the thought scared me, we got in the car and I drove. Somewhere new. And when I pulled perfectly into the space, Squidge declared: “Mummy did it!” I was so proud.

Today, for the first time ever, I took Squidgelet swimming on my own. She’s two-and-a-half now, with such amazing communication and empathy for her mummy. I have always been too scared, terrified I might fall.

But she listened to my every instruction, always looking back as she held my hand to make sure our small and steady steps on the slippery surface were keeping pace.

She splashed, she jumped, she kicked her powerful little legs and swam all on her own. It was almost as though, with her buoyancy vest on, she didn’t need me. But better than that, she wanted me there.

I struggle to pull myself up onto the side of the pool, but my beautiful girl pulled me the rest of the way by pulling my shoulders with all her might, so determined was she to push me in again.

I’ve never had so much fun!

I dreaded getting dressed again but kept my voice calm and we talked through every step together. I even managed to coax a hesitant Squidge into the showers. I have learnt everything is a matter of making time for it. No need to get annoyed. No rush.

And here is our #successselfie

My awesome little sidekick and me, all dressed.

I had some shopping to get so decided on lunch in Morrison’s 2 minutes away. Parked perfectly there too.

Squidge, very well rehydrated after swimming had an accident as I sat her in the trolley. Potty training is going really well so we’re at the stage of pants rather than nappies and we’re just starting to have dry days.

Related to the cerebral palsy I believe, I had bladder incontinence issues well into my teens that was resolved by medication in the end. I have never forgotten the shame or lengths I would go to to conceal the problem so I wouldn’t have to miss anything fun. I fully believe Squidge has the same excitable logic and I absolutely refuse to let her feel one iota of the shame I did. We carry 10 changes of clothes and handle everything with a “No worries.”

We got her changed and enjoyed lunch together

Pretty much as soon as this orange juice was consumed in one slurp, there was another accident. She waddled back to the toilets, but I praised her highly, remembering too well how uncomfortable it is to walk with soaked legs.

Quick wardrobe change and Squidge was back in the trolley, diligently ensuring all our purchases were well placed.

I adore her and didn’t care a jot when she admitted to “Poo!” as we were at the checkout. It’s much better to see the hilarity in heading back to the toilets for the third time in 2 hours and wondering how I hadn’t been questioned for shoplifting.

The freedom that my determination to show Squidge that there’s “No worries!” is immeasurable. It, and she, are doing me the world of good right now.

Mummy did it, Squidge!

I am too important

I fell over in the supermarket last week. It was not my fault. This I know – displays should not obstruct aisles to the point of injury.

And yet, as I sat on the floor recovering, flanked by 2 lovely strangers who stayed to check I could get up safely, familiar feelings crept in.

Embarrassment. Vulnerability. Shame.

The dull ache of whiplash and resultant stiff muscles ruled my weekend. I cried all weekend, so overwhelmed by misery.

I hate to feel useless. But I feel it more and more. My confidence, ever fragile, is destroyed by every fall. I am going out less and less. I can feel the independence I wrangled for creeping away from me, each of us withdrawing into ourselves. We’re separate again now, you see.

That’s not OK. I grieve every day. I was never allowed to recognise that process when I was younger. I was supposed to be grateful that I had legs that worked and that wasn’t worse. I have been haunted by “it could have been worse”.

I don’t try and deny that grief anymore. I think that by accepting it and letting myself say with the finesse of a child that it is unfair, I am saying it cannot overwhelm me.

Sometimes it still does, this weekend being a prime example. So overrun with emotions – shame and hatred among them – I was desperate to lash out at the body that fails me and punishes me in doing so. Rationally I knew it would achieve nothing, but I was so overrun with hatred for the body I can never turn away from or escape.

It gets so very lonely, being on the fringe of so many parts of society. I can be disabled… but I can walk; I can be a mum… but I walk funny. I’ve never been able to fit anyone’s view. And it has broken me. All I have ever wanted to do is fit.

But I will not. Denying my reality is causing me so much pain. I already have so much pain. I do not apologise when I say I cannot live like this anymore.

I cannot live with I can’t. All that makes me feel is that I can’t be society’s perception of what I ought to be. But I am learning that other people cannot validate what they haven’t come to understand.

I don’t want to waste away here, resenting the safe haven of my home. That is not enough for me. But I do need to feel safe. And so I have finally decided to invest in a walking aid. The thought even as I write that makes me shudder with the embarrassment teenage me felt so acutely when I rejected the option.

But it cannot serve my pride in this way any longer. If I stop living, Squidge misses out too and even if I have to accept a decline so young, I will never accept its effects on my darling girl.

So I’m going to safeguard my independence however I can and teach Squidge that all expressions of emotion are OK, are healthy if they are being processed.

I fully expect that one day she may not want to be seen with her mum and a walker and that’s OK. I have to deal with the disability whatever, so there will be nothing I can’t deal with in her honesty.

But for now, I choose to let this decision empower me. After all, if it helps me carry on, then that’s all that matters. A wonderful friend said to me today “It is not for all the time. Often, it is just a visual reference to inform others you need more time.” Disability is not the either/or scenario I have always imagined. We can work with it. I hope. It feels positive to feel even that.

I am making a choice. I am important. I will shout for what I need. I will teach my girl to shout too. We will muddle through. As Squidge would say (to)”getha”

30 things I have learnt in 30 years of being me

Yesterday I turned 30 years old. I am officially a grown up. I have been always been afraid to age physically but this has harmed me emotionally too.

Last year, in a shopping mall cafe, I sat and wrote out a list of berations. I wrote myself out to be a hateful failure. For all my blessings, I was miserable, trapped in this body and more so, my head.

This year, entering a fresh new decade of living, I am proud to report that with the much needed help of the Mental Health Team I have very much separated that negative voice and now I recognise how and when it tries to sneak in and beat me back down. I have made a conscious choice not to let it win.

These are the 30 lessons I have been so lucky to learn in the last year:

  1. I am a dedicated mum

  2. I am determined

  3. I want the best for myself

  4. I am stubborn

  5. I cannot read minds

  6. The Little Monster cannot be defeated, only managed

  7. My body is not my own just yet but we can learn to muddle along together

  8. Every facet of my identity is my own. They do not need explaining to anyone but me.

  9. The truth can be a friend. I will not spare people’s feelings anymore

  10. I needn’t be embarrassed by my disability on account of people’s lack of understanding

  11. To ask for help is empowering and positive

  12. Decisions taken as a result of my limitations must always be in my best interest

  13. Self care is vital – and allowed

  14. It is OK not to be OK

15. It is vital to be able to say I’m not OK. I have a wonderful husband who wants to listen.

16. I do not need to hide this disability away because I am “lucky enough to walk”. It is mine to own.

17. Not everything is my responsibility. Disability is something society should be accepting of outright. I shall tell it as it is and it should be and no more. My energy is too precious to waste.

18. When I ache, it’s time to stop and be kind.

19. Sleep is precious. Fuck it, napping is empowering.

20. I have brilliant friends who fully support my tendency to drop in and out of their lives, energy dependent. I wish it was different but thank you for loving me regardless.

21. Pain does not have to be endured. Painkillers are acceptable and often necessary

22. I do not need to wage war with a body that struggles anymore. This is a body that has done amazing things for me and made me forever part of the best little person I know.

23. Comparison really is the thief of joy. People are living their own lives to the best of their capabilities.

24. It is no-one’s fault my capabilities have their limits. Least of all mine.

25. I hate to say it but my mum was right…. comfortable shoes and a bag worn on two shoulders is the way forward. Sorry I doubted you Mum!

26. I know this body best. There is very little point in being bamboozled by the medical terms and still not getting the help I need. No more struggling on, I will continue placing the right people and treatment around me.

27. There is pride and achievement to be found in the smallest things. Put my own hair up? Great. Put 3 loads of washing away? Awesome.

28. I will not feel ashamed for repeatedly hitting rock bottom. It is my right to cry and say this life is too hard. Because it is. But I will always fight on for my little family.

29. I will not lie. I will explain each struggle to my beautiful girl so that she understands why Mummy must cry sometimes. She will not be afraid of tears. She will know they are healing sometimes and that Mummy fights on.

30. I will always remember my place in my little family with a girl who loves me and a husband who supports and cares for me in ways I have never afforded myself so that I can enjoy our life together. I will not forget how lucky I am to belong to you both.

Here’s to a very successful 30s!

Please, Ask Me What It’s Like to Be Me

This is written from a place of emotion. CBT tells me that I shouldn’t always listen to my emotional voice. It’s loud and often angry. Mental equilibrium is achieved by letting the rational voice in, to quieten the emotional voice and calm the mind.

But, what I have realised is, my mind cannot be calmed if it cannot believe it is in charge of my body. It doesn’t. I don’t. So, this comes from a place of struggling, of raw pain. Of wishing there could be just a little more understanding.

I offered some insight into my life to a hard-at-work author today, who wants to portray someone, like me, with mild CP in his book. I haven’t seen many such characters (though maybe that’s on me to widen my reading, I get that). But talking to him, telling him my truth was strangely cathartic. I was glad I did it.

See, a lot of my historic experiences have shown me that society believes (and the media often expects) that one disabled person can speak for us all. For me, that figurehead seems to be Tanni Grey Thompson. A very accomplished woman. I will not insult either of us by calling her inspiring. To me, she is just a woman living her life as best she can. After all, that’s all any of us can be right? But to the media, she is the person to (literally!) roll out to explain any disabled related issue to the rest of us. I got sick of the sight of her on TV to be honest and the poor woman has done nothing wrong. But the point is, she does not speak for me, even on the occassions when our opinions align. For starters, we have very different conditions. Tanni has spina bifida. I do not. She uses a wheelchair. I do not. Not all the same see?

I cannot speak to the life experiences of every disabled person, or even every person with the exact same condition as me (spastic diplegia cerebral palsy, in case you wondered). Cerebral palsy has many types, on many spectrums and effects each life differently.

I spent my teenage years, my physically better years pretending it wasn’t there. I’d cry everytime I caught sight of my scissor pattern staggering in shop windows, because that wasn’t the person I was in my mind’s eye. To me, so long as I cou;dn’t see it, I was the same as everybody else.

Except, now, I know this is the wrong approach. The physical toll has worsened. I live in a body worn to an age about 20 years above my documented age. Now, I live in fear of aging. I will not die any sooner as a result of my condition. But at 60 years old, I will likely feel as most people do physically towards the end of their lives. I will be facing, statistically, another 15-20 years, a gift I’m sure. Except, what does 20 years past the end of life feel like? No-one can know can they? I am terrified.

And that’s not what people want to hear. People want to tell me I’m strong and brave and quite frankly, I’m sick of it. Those are token words, they are not what I feel, not by a long shot. I’m not living this life because I’m strong or brave, or (shudder!) an inspiration. I am living this life because I have a family and dreams to live for. Because to not live this life takes away the pride I feel at belonging to them all. I live this life simply because there are people too important to not be here to love and enjoy.

I suppose the argument I have with myself, rightly or wrongly, is that people hide in these platitudes because they cannot know what it is like to be me. I get that. But please, please don’t be afraid to ask. If I’m having a good day, I’ll say it is what it is, that my husband, my daughter are all the reason I need to be OK with being me. If I’m having a bad day, I will probably cry. I will tell you I’m sick of being constantly sore and I’m too tired to do this anymore.

I realise how awkward it might make you feel. No-one really knows how to fix another do they? And I know I cannot be fixed. I long for it and I will not apologise for it. But I know in my heart that it is not a realistic expectation and am moving to take positive steps in self-acceptance, because I feel this is something I really need in my life when the prospect of living a long life has the power to frighten me so much. I have a lot to live for, but that doesn’t make the act of living any less hard.

So, if I’m in tears, if I can’t do this anymore, please don’t shy away. These limitations can be incredibly lonely. I don’t expect the world to fix me. I just need someone to ask, to wear an empathetic/sympathetic face. You don’t need to tell me I do “so well”. I need you to recognise that this is hard, to tell me that the constant struggles are rubbish and unfair. Everyone understands how hard life can be? How unfair?

Please don’t be afraid to ask. To hear. I will always fight on another day. I have things to fight for.

But sometimes, I just need someone to join me in a beaten heap on the floor, someone to help me get ready for the fight again.

Did I make you uncomfortable?

I’ve written before about earning the nickname of The Part Time Part Timer at work.

I made a flexible working request with my boss, who was brilliant and let me work from home as much as I deemed necessary without another word, so long as I was taking good care of my body and managing my pain.

It means I’ve been out of the office a lot more, seeing a lot less of even my colleagues on the field.

My boss tells me I should care about me and not what anyone else thinks of me, because my life is no-one’s business. He’s right of course, but I’m a born worrier.

I decided to try and take control of how rubbish the ill-informed jest made me feel. I know no harm is meant but that still doesn’t give such words the right to make me feel so bad.

So I decided to be honest. To share the details that would otherwise be missing from colleagues understanding about my absences from the office.

Someone asked me for some paperwork I hadn’t seen. I couldn’t find what they asked for. They said it was time sensitive and asked “Do you mind if I have a look? You might not have seen it…”

I moved back and started to say: “Of course not!” when they finished “…because you’re never here.”

My defense tightened in my chest. I knew they meant it in a light-hearted way but enough. I had the right to speak a truth they might not be aware of.

“Actually, I’ve had to work from home a lot more because I’m finding I’m in more and more pain.”

But they were talking again before I’d even finished the sentence.

“Oh, I shouldn’t have said that.”

That told me they weren’t really listening, batting my words away.

And why would they do that? I can only surmise it’s because the truth made them uncomfortable. I wonder if I’m supposed to feel apologetic. Because I don’t. My life, its ever increasing limitations make me uncomfortable every damn day. It’s only right to let that be the truth. I have to deal with it, it’s not my problem if others cannot.