Happy 2020 – 10 years in review

Another year has rung in. Everyone on social media is doing the #10yearchallenge to contrast (and hopefully celebrate) the decade gone by.

But it’s more poignant for me. At the end of the month, (January 30th to be exact) it will be 10 full years since, a bit worse for wear, I met a man outside my favourite nightclub. We didn’t know it then, but I would become this man’s wife and I would become the mother of his children.

In the last 10 years, I have hit so many milestones, so many I never expected to, because I just didn’t believe I could.

But that’s OK, because Kev did.
In the last 10 years, I have

❤ fallen in love

With a wonderful man that loves me too, when I never thought it could be possible

🏠 moved out of my family home

🌆 moved cities (twice)

I hate moving. I’m very glad to call South Wales my adopted home now.

💍 got engaged

👰 got married
It will be our 5th wedding anniversary this September. I have absolutely no idea where that time went, but am so pleased to report we are still very much where we belong. Together.

👩‍💻 started my OU degree

This is one of the things I am proudest of. I started my six year course 4 weeks into married life, because I’d finally run out of excuses as to why I couldn’t, and so I knew I had to try. This is the one thing that is simply for me, and I am on course to graduate next year. I don’t know how the time has gone so fast, but I love it so much.

✈ gone to Disneyworld

Here I learned that if you’re sat in a wheelchair (because walking hurts when you’re 3 months pregnant and have CP to contend with) most of the employees assume you’re deaf and mute and just talk over you! It made me feel so sad.

🚄 gone to Paris & the Moulin Rouge!
I have wanted to go to Paris since I was young, after falling in love with the film Moulin Rouge. I finally made it there with my best friend in the world when I was 5 months pregnant and snuck Squidge some prosecco during the show. Not gonna lie, she loved it – and so did I! A total bucket list weekend and I’m so glad I had a friend that was determined I would live it – even if it meant her pushing me in a wheelchair up the hideous inclines of Parisian hills.

👶 met Squidge and finally understood what I am for 😍
What can I say? After the trauma of our birth story, this little girl is my greatest gift.

🏠 bought our forever home
Not going to lie, in places it is a shambles. But like I said, we’re never moving again without a lottery win, so we’re determined to spend our lives making it our own little peace of heaven. I love having somewhere to feel safe that is all mine. I never thought it would happen and credit one incredibly hard working husband that I am incredibly proud of.

🚗 got my driving licence after 7 years
Hardest won fight of my life I think. I can’t say I enjoy driving and I am not confident and even a year later only go where I have to. But that doesn’t have to matter does it? The point is, I’ve given myself choices, because someone believed in me enough that I indeed proved I can.

🏝 gone to Cuba and swam with dolphins
I’d recommend Cuba as a holiday destination to anyone. I have the beaches at sunset as my background on my work laptop for when I need a bit of peace. I was so scared to leave Squidge for the first time, but I swear, that island was paradise, and in contrast to Disney, I couldn’t believe how attentive the locals were to my CP. They didn’t know what it was. They didn’t ask. They just looked me in the face and asked if I wanted their hand. It was wonderful to be treated like a person, to feel the beautiful sun on my skin. If you ever get the opportunity to go, go! You won’t regret it.

👨‍👩‍👧 took Squidge on her first family holiday

A week in Devon contrasted against Cuba somewhat. But it was Squidge’s first holiday and it was honestly heaven. We were just a family. Time was a concept that went out the window and I felt so peaceful. Squidge took the lead on our activities and we showered her with attention and it was bliss. It taught me that my family is the centre of everything for me, and put me at peace with the idea that work will have to end soon, because my body demands it. I have so many much more enjoyable days at home to look forward to.

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I know it probably feels like I am bragging horrendously. Maybe I am. I apologise, that’s not the intention.

2019 has been a year of self care for me. Investing in CBT courses and private therapy because I did not feel at peace with myself, despite the enormous blessing of my family. It has been hard not to slip back into the lingering darkness that is depression. It has been hard to fight against the voice in my head, which I believe implictly to be myself, which seems so angry at me.

But it has been the most important battle. Highlights like the ones listed above show me how much I have achieved, when there was a time in my youth I honestly believed I wasn’t capable of achieving anything. It is so important for me to recognise the things I have done well, to recognise the invaluable support I have had from my family, whom I love so much.

More than anything though, as I took a deep breath on New Year’s Eve, I realised that I am worthy of each of these blessings. Some are made of good fortune and luck, but others I have seriously had to work at. I deserve happiness. I do. Because what is life without it?

Wasted. And in this body, with the challenges I have to face year in and year out, I really don’t have that much left to waste. And life itself will never stop challenging any of us will it? So why fight it? Why spend so much time feeling drained for battling against the things I cannot control? My energy is too precious, time is too damn precious.

2020 I shall strive to make the most of them both.

I sincerely hope you do too.

Happy New Year.

Priorities vol. 2

Whenever I have been faced with needing to make changes, to practice acceptance of my changing capabilities, my wonderful, loyal, supportive husband has only ever asked one thing of me. “I’ll support you in whatever” he says. “You are living your life, you know best. But please, don’t make any decisions based on your emotions.”

Yesterday, after a very long day at work (all-day conference in the city), I fell over in the dark street having just got off my bus. I got up slowly from the ground and felt a familiar pain coarsing through my arm. I’m still not over my most recent bout of whiplash, so it feels like the aches, the pain and the limtations have been lingering for weeks. I called Kev, and asked him to come get me, as I was just at the end of the street. He raced down and as I saw him coming, I burst into tears. Because I knew I could now, that someone was here to understand.

We walked to the next corner and I lost my balance coming off the deep kerb. I screamed. Not because of pain. Kev caught me, I was fine. I screamed like a wounded animal. Because I feel more and more that I cannot be safe, that I am not allowed, I am not able to carry on with the threads of life I am trying (too) hard to hold onto. I fell over yesterday exactly at a point where I was allowing myself the thought “I am doing well. All these treatments are allowing me to keep up.”

I screamed because it felt like my body had heard the thought and just decided “Let’s remind her how wrong she is.”

Kev was worried that neighbours would come into the streets, wondering about the woman screaming in such pain. He tried to shush me. I stood in the road, clinging to him for my balance and sobbing. Sobbing about how unfair it is, how useless my body feels and how much I don’t want to live like this anymore.

I know the way I have to live cannot change. I grieve for that fact every day and I do not apologise for it. But sometimes, I am just too tired. Tiredness is the precise reason I was able to fall in the first place. I’m not sure it used to be and it makes me so sad.

The sound was awful. I knew it was me and yet to hear it, to have it be so desperate to escape from my chest and throat, it was like I was listening to somebody else. All I could see through the tears was the blur of the street lamps, and all I could hear was this awful sound. That poor woman, I thought, she sounds in so much pain.

Because it always changes. Part of my experience with disability and depression has always been, rightly or wrongly, that if I am depressed, I cannot be caught off guard when the depressing times or events come. It cannot impact me, they were expected. I don’t mind admitting it’s a horrible way to live. But that’s always been my rationale.

This weekend, I had what I call a peaceful moment. A realisation of true peace, calm and contentment. They are very rare to me. In fact, I cannot remember any outside of the 4 years Kev and I have been married. I’m sure this is not a true representation, but it does show what an amazing impact my husband has had on me as a person.

The first one was the day after our wedding. We’d booked a nice spa hotel for a mini-moon, to let us adjust to married life. Spas are ridiculously important to my physical maintainence and I remember just climbing into the warm jacuzzi. The sun was setting, sending beautiful red streaks across the sky as we looked out onto the Welsh hills. We held hands, our new wedding rings shining on our clasped fingers. There was nothing to do, no-one else to worry about. All we had to do was be.

The second was a weekend away around the first anniversary of my dad’s death, when work had been hectic and my grief heavy. It was to the city of St. David’s, which is in fact this beautiful little village. It was pouring down with rain pretty much the entire time. So all we did was walk between the hotel, the little chocolate shop and the pub with a roaring fire. It was as if the world couldn’t touch me there.

The third was the perfect day we had in Cuba, swimming with dolphins and eating lobster, drinking rum on a catarman as the sun set. An experience in a beautiful part of the world I could never have imagined I would get to see were it not for the husband so determined I deserved to see it.

The fourth was our first family holiday, where nothing mattered other than our little girl’s happiness.

The fifth was just this weekend. We went for a nice autumnal walk in one of our local parks, me wanting to crunch leaves underfoot, Squidge wanting to play in the park. There was no rushing, no clock watching. We went for hot chocolate at the café and I looked at them both, my husband and daughter, and I was so peaceful, so content. Right in those moments, I had everything I need in the world.

And I think that’s why it hurt me to hear myself so distressed over a fall. Because I know it was because I was tired, a reult of wanting to work too hard. It is not my fault. It is not what matters most. Yet still, I get so absorbed in what people must think of me, all these shortcomings that make me so pitiful and abnormal. Except, I am slowly realising, those are not the opinions of others. It is me, projecting my own. And I don’t want to waste my precious energy on being so angry with myself. What use can it possibly be when I had that moment in the park, that wonderful moment of knowing I have everything I need?

My family is everything. They are what ground me and who make me feel whole. I refuse to care any longer about whether I am working hard enough, or how much longer I can work to put coffers in the pot. A job is not what I want. My family is. I would like nothing more than another baby and I am determined not to wear myself down working. I know too that Kev would adore another child. So much so, that he refuses to wrangle with himself as I do over the finances. “If it’s something we want” he says (he knows it is) “then we will manage.” I have spent a lot of time and energy arguing with him, but what for? To see if I can make him as worried as I have been? It’s useless. The two of us are too determined in our aim. And what a beautiful aim it is.

The idea of managing has always stuck in my throat, like it cannot be enough. But I don’t care anymore. Somewhere safe and warm to sleep, with food in our bellies and love for each other. That’s all we need and we have all of that. I don’t want to struggle anymore. I want walks in the park, at my own pace, not having to think about what the rest of the world needs from me. Because what I have to give is not for the rest of the world, it is for my family. It is for that poor broken woman whose screaming is still ringing in my ears.

I really needed that

This is the walker. Squidge loves it but there are versions of me that despise the fact I need to use it at all.

Today was not a day when that fight needed to matter. I had slept horribly on my shoulder and every movement hurt. Today I needed its help.

I dropped Squidge off at playgroup and was already in tears from the pain. I felt so lost and overwhelmed.

And then, walking through town, an elderly couple approached me, joking about not texting in charge of a vehicle.

The lady asked me outright what I needed it for, curious, not accusatory. It felt strange. But her kindness allowed me to a bit more honest.

“My balance is shot.”

This lovely stranger squeezed my hand and said “Good for you. You’re doing the right thing then.”

I really needed to hear that. For once, there was no judgement, no eyeing me up as a fraud because you can’t see my pain.

I went on to my massage. The therapist was so kind and understanding. She knew of cerebral palsy, was unsurprised when I mentioned my muscle tension, or the need to have a bit longer to get undressed. She even offered to help. And I didn’t allow myself to feel patronised. I felt supported.

She worked tirelessly on my muscles and tension. I felt the pain subside, the muscles loosen. By the time I collected Squidge from playgroup I felt human enough to agree to a play in the park.

After the emotional turmoil of constant pain and stress these last few weeks, it was nothing short of miraculous. I’m allowed to be important too. I think I really needed to be told that today.

“Look Mummy, who’s that?”

Yesterday, I walked with Squidgelet to the end of our street and purchased a walker.

*exhale*

My teenage self is disgusted with me. Scoffs that I have given up.

My 2 year old daughter didn’t bat an eye.

That morning she walked halfway to the library for Rhymetime holding onto the pram. All I had to do was tell her where to hold.

“No let go of pram” she promised me faithfully. There was no question that she would. She understands she needs to listen.

I showed her where to hold the walker. It was exactly the same. I was so proud of her.

I text Kev to say it had been bought. He told me he was proud of me for making such a huge step for my independence even if my pride was hurt and my 14 year old self sulking indefinitely.

“I know it’s a good thing…” I typed, “…but I feel so defeated and defined by it and it breaks my heart.”

It felt unnatural to rely on it, even if I know it’s not for all the time. It felt, rightly or wrongly, like my capabilities came in second after this unsightly lump of metal.

I started to cry, as softly as I could. I couldn’t help it. I was grieving, letting my teenage self let out her disappointment. After all, I never knew this is where I’d be at 30 years old. I don’t know what I could have expected when the medical profession and support services stayed tellingly silent. But I never thought being 30 would look quite like this.

Squidgelet frowned when she saw me wipe my eyes. “Mummy ow?”

“No darling. Mummy not ow. Mummy sad. What would you like to watch? Wiggles?”

She pondered it for a moment. “No Wiggles. Photos.”

All our photos slideshow on our TV.

Looking at me, photo after photo, she asked “Look Mummy, who’s that?”

With her beautiful big heart, Squidgelet distracted me from my tears.

Mummy proud, Squidgelet. Mummy so proud of you.

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.

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.