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”

It Doesn’t Have to be a Nightmare

So I thought that first fall was my worst nightmare come true. I never counted on feeling worse than that, even though I know it was unavoidable that it would happen again.

On Thursday night, Kev went for a run whilst I agreed to bath Squidge alone. I wrapped her in her towel and lifted her into my arms, doing well so far. I tried to pick my steps back into the lounge carefully, she is precious cargo after all. But I kicked one of her boots that I’d stupidly left on the floor and we keeled over together. I wanted to throw her away from me, but the only direction she could land in the split second that we fell together was towards our glass coffee table and I just couldn’t make myself let her go. So in that instant decision, I had no choice but to land on her. I moved off as quickly as I could, but understandably she cried.

The guilt coursed through me and I cried too, checking her over again and again, even when she’d stopped crying as soon as I’d adminstered ‘magic kisses’ to where she said her arm hurt. But oh, I felt like a monster, a careless monster. After all, I should have known to pack her shoes away before undertaking bath time by myself. I called Kev in an instinctive panic and he came home as quickly as he could. The rest of the evening passed just as normal, though I’ll admit I did have a glass of wine for medicinal purposes!

The next day, playing on the floor with Squidge, she playfully pushed me back on the rug, wanting to climb and lie on me and play. That’s usually a good way for us to play together, because there’s nowhere else to go if you’re already on the floor, it’s pretty safe. But this time, I fell back on her big toy drum with quite some force and I cried out in pain when it dug into the tense muscles of my shoulder.

Squidge stopped dead, frowning in concern and confusion as Kev moved to help me get up.

“Mummy ow.” I explained when I was sat down safely.

“Mummy ow the drum.” she replied.

About half an hour later, she threw herself down on the floor, striking her back on the drum in the same fashion I did, looking over at me as she shouted: “Immy ow!”

In that second, I was heartbroken, realising she was imitating my fall, repeating my pain as if it was a normal aspect of the life we live together. In the next second, I was impressed that she had understood the whole incident. After all, imitative play is how children develop an understanding of their world and whether I’m comfortable with it or not, falls and pain are a regular and undeniable part of our life.

I got down on the floor and said gently: “Oh darlin’, Immy doesn’t have to ow. Mummy ow cos Mummy fell over.”

“Immy and Mummy fell over.”

Then I realised she was connecting the two incidents, as if it was she thought she had to fall because I did, because we’d fallen together the previous night. Again, heartbreaking. After all, I am her mum. I am alive to be her greatest protector and yet from my arms, she had felt pain, however fleetingly. I felt so guilty, although given how much I worried about this exact incident when she was a tiny wriggly newborn, I suppose there was a need to be proud that it had taken me over 2 years to get to the dreaded moment.

But still, it showed how clued in she is. That made me very proud too. She shows such a great level of understanding and empathy.

“We did fall over darlin’, but only because Mummy has tired legs. Immy has clever legs, you don’t need to fall.”

I showed her where on my body I had hurt myself on the drum, let her feel the tight tenderness in my shoulder.

“I don’t want you to ow like Mummy, when you have clever legs!”

“Clever legs!”

“And what does Mummy have?”

“Tired legs.”

I think this is the start of explaining Mummy’s differences. In the simplest terms I can. And so far, my beautiful Squidge’s head and heart are keeping up. I really hope this won’t be so bad after all.

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.

Facing Fears

The pain I have been in and how useless it has made me feel these last couple of weeks came to a head on Friday night. When Kev arrived home at 6pm to bathe Squidge and put her to bed, I couldn’t speak, sinking into my sadness.

As Squidge requested that “Daddy read” her bedtime story, I ran a hot, hot bath hoping my muscles might relax. I climbed in and burst into tears.

I fell into an exhausted sleep at some point that evening but even then… the tears and the sadness didn’t stop. In truth, I think I cried for 18 hours straight.

I think I was grieving. Grieving for the mum I wasn’t capable of being, for the support and experiences my beautiful girl couldn’t have because of me.

Having no choice but to accept that I will always be sore. Maybe not quite this much, but always some. That the levels of pain will always have some level of control on what I am able to do. And that didn’t seem like much at all.

We had a wedding reception to go to. But I couldn’t face it. Told Kev I couldn’t face the crowds, the small talk, the exhaustion and feeling like an eternal party pooper.

And Kev was as understanding as he could possibly be and told me that was fine. Said Squidge should go to his parents as planned and I should take care of me. But I just cried harder, I felt lost. If I wasn’t going to go, then I wanted to spend the weekend giving my time and energy to our little girl because the pain had let me fail her.

But Kev was right when he said I had no energy left to give, that to try when I was running on empty would be to everyone’s detriment. And I felt awful. Because more choices were being taken from me, because I couldn’t be the mum I so want to be.

Feeling like that though, how on earth was I supposed to go and have a nice, relaxing day to myself? When, not only would I be letting my daughter down, but also friends who were expecting me to celebrate their most special day with them? The prospect felt hollow and oh so lonely. I knew that if I was left alone, the horrible grieving tears had no chance of stopping. I didn’t know who to reach out to, because who can understand all the facets of this life?

The lessons of my Cognitive Behavioural Therapy course were also ringing loudly in my ears.

Face. Your. Fears.

Avoidance only offers temporary relief.

So, I took baby steps. My breathing wasn’t quite regular even when I got in the car with Kev, London bound. I didn’t know at that point whether I could talk myself into going to the reception. But it didn’t matter. I didn’t have to be alone.

And I went. I went into a room in a dress that made me feel pretty, in shoes that didn’t make me wince (Calla are literal lifesavers… I never thought shoes could make me happy) and I enjoyed the small talk, I enjoyed seeing so many happy people in one room. There was always a glass of Prosecco in my hand and it took hours of propping up the bar before my feet started to ache. I tried desperately not to pay attention to the time, to not bring myself down by feeling like a let down.

As it was, I admitted defeat just before 10pm – a solid effort for me. Kev was equally triumphant on my behalf and came back to the hotel with me without a word of complaint. I was a warm and happy drunk and felt accomplished with it.

I’d listened to the CBT advice and accomplished something for me, faced my fear of social situations, feeling like I couldn’t fit in a roomful of energetic happy people.

And I went to bed and slept for a good long time.

Exactly what I needed. Well done me.

I wish I didn’t have to tell you how much Mummy hurts

You’re still my baby. For all your confidence and independence, you are my baby and I am the mummy. It is my job and my privilege to take care of you.

My heart is happiest when we have days like this in the park… I wish you could know how beautiful you are my little sunshine.

But we haven’t made it to the park today. As I write, you’re napping on the sofa beside me, Freddie tucked up under your head. You’re so peaceful.

I’m not. Working from home without all the trappings of adjustable screen risers and chairs is taking its toll… one I didn’t even think to expect. That happens to me a lot now and I’m getting more and more frustrated. It’s horrible having no understanding of your own body. It’s so unfair.

My back has been in constant spasm. I didn’t even understand that I suffered muscle spasms at all until recently. My back has been constantly tense, my muscles feel solid and useless. Every little movement hurts today and it has made me feel a terrible mummy.

I couldn’t lift you up… even when you asked so politely with your please and thank you. You couldn’t understand why because you’re so small and you’re still learning. But the pressure of you asking continually made me burst into tears.

You understand what it means to cry now and tried to distract me with songs and games and shouts of “Mummy!” You have such a big heart, darling girl. I tried very hard to stop crying… for you.

But it breaks my heart that I will have to explain to you so many times and in so many ways as you get older all the things that Mummy finds hard… and harder.

I don’t want you to hate my differences. And the only way I can expect that to be what you learn is if I teach you. So I have to learn not to hate them either. But oh, when they sneak up on me like this, a nasty little reminder that I am not in control of my own body, it gets so hard.

So I’m so sorry if I shouted Squidge, or if I made you feel sad. Mummy is struggling today. Because I so wish I didn’t have to share this pain with you. Today I could not hide it.

I’m sorry we couldn’t go to the park.

What does it mean to be a grown up?

I am *gulp* 30 this spring.

I have always been someone that thought those 5-10 years older were the coolest and totally had their lives and identities figured out. As it is, I’m not even sure it’s cool to label someone as “cool” anymore. But the point is, when I was 7, I thought 11 year olds were the best. When I was 11, 15 year olds were all I could ever want to be. When I was 21, 25 year olds around me seemed to have picked out their careers, loving partners and beautiful houses. They knew what they were doing.

But as I’ve gotten older, I’ve realised that age is simply that. The wisdom that the older generation informed us came with age is distinctly lacking with my fellow millennials. We’re all frantically paddling underwater, as it were. No-one has a bloody clue.

As far as my own identity goes, that’s always been a bit of a muddle too. I was very forunate to meet my husband at a very young age, to know I’d met someone that so wanted to understand everything I am, to support me in discovering everything I could be. Being with Kev has given me experiences I couldn’t have dreamt of had I not left my hometown. Before the big 30, I have a collection of Very Important Papers – our marriage certificate, Squidge’s birth certificate, the titles to our home and my driving licence. In just those few, I realise I have more than some people ever do.

Equally however, some of those people have something I am still grappling with: self assurance.

I have always wanted to be one of those millennial lifestyle bloggers; you know the type – work hard, play hard, has had a favourite wine picked out since their early 20’s that they can drink by the gallon on a Saturday night, chased up with flaming Sambuccas as they happily get to know a dozen new people in a heaving bar, probably somewhere in London where said wine costs £15 a glass.

I waste so much of my waning energy berating myself for not being that person. Except, what with the journey of self acceptance I am on thanks to the support of the Mental Health team, I have to realise I cannot hope to be who I am not. I have to realise that I am OK.

Admittedly, I feel very out of place sometimes, like I haven’t managed to learn things about myself that other people have by my age. I don’t wear make up for example, because at 29 years old, I physically can’t apply it. I don’t have a signature lip culour or a go to perfume, or a protective face I can paint on to make myself feel safe or beautiful. I am just me.

I can’t style my hair. This one I am looking to tackle because I’d like to look a little different. But I really don’t think I could be bothered to waste time on ever-changing make-up trends when I could in fact be sleeping. Sleep is very important to me, to my abilities and my sanity. My Sleepstar eye mask has been one of the best purchases I’ve made so far this year. No flaming Sambuccas over here!

I think it is safe to say I am not living the life of my peers. I work from home more and more now, to manage my need for sleep and increasing hospital appointments for physical pains and mental struggles. There are no grand plans for travelling or holidays. Instead, there are savings to enable us to renovate our house into our forever home, for us to eventually become a one income family. I feel such a responsibility to contribute to all of these things before I am unable to contribute at all.

To me, being an adult is about having a pension plan, pension contribtions, shoes that don’t make me want to cry in pain. My sense of fun has waned in their favour as my energies and capabilities have left me. But I feel positive, for the first time in a long, long time. The Mental Health courses, in the first instances are allowing me to identify what the struggles are and what strategies are best employed to confront them.

I suppose, being a grown up is accepting that not being like everybody else is a good thing, that uniqueness should be appreciated and celebrated. Knowing that I don’t have to like gin, or avocado, or hot yoga (genuinely do not understand any of these concepts. I do like (cheap, sweet) rosé and sitting around surfing eBay and enjoying terrible 80’s films. (Grease 2 is on in the backgound as I write this and people, I’m not even sorry. It’s so awful that it’s brilliant). That to take advice late is better than taking none at all. (I’ve only just started using skin cream this year and I’ve switched from regular to camomile tea to better manage my anxiety.)

It’s being able to utilise good advice and routines. I recently began using Headspace as a tool to calm me down through guided meditation and breathing exercises. I can’t recommend it enough. It gives me somewhere to go when I need to destress, something I am doing to help myself. And I feel the benefits in my sleep alone.

There is a long way to go on this journey, as there is for all of us. But if there’s one thing we all need, it is hope. Hopefully some kind of aceptance comes along with that eventually, but for now, it feels good to be hopeful. I think I am ready to be a grown up.

Just in time right?