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

πŸŒ† moved cities (twice)

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

πŸ’ got engaged

πŸ‘° 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.

πŸ‘©β€πŸ’» 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.

πŸš„ 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.

πŸ‘Ά 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.

πŸš— 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.

πŸ‘¨β€πŸ‘©β€πŸ‘§ 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.

We Are The Champions

Full disclosure: I fucking adore Queen. The ability to time travel would put me front and centre at their Live Aid show. If you cannot comprehend this adoration, then I am not your kind of person right now. And that’s OK.

Full disclosure 2: This post was written by a thankful wife in a happy rosΓ© induced haze at the request of a deserving husband. I cannot be sorry about that.

This morning the dreaded brown DWP envelope arrived. It was due. In fact it was late so hardly a surprise, but oh how we dreaded the outcome.

# I’ve done my sentence, but committed no crime #

I tore at the envelope and under Kev’s watchful gaze, scanned for the words “cannot award”

Instead what I saw were the words “enhanced rate”.

Twice.

I have received the maximum award on both elements of the Personal Independence Payment for the maximum length of time.

*exhale*

It’s more than we could have hoped for. But even I know it’s not undeserved.

# We’ll keep on fighting til the end #

I didn’t fight. I didn’t have it in me. I couldn’t face the reality of my diminishing capabilities, especially for money. Even though we need it, it seemed so cheap and crass.

So Kev wrote the reality down for me, determined I should have a chance at what we needed to survive.

And they listened. I never could have expected that, the system is such a shambles. The relief is indescribable because right now, it isn’t real.

I no longer have to push myself to work. I can choose to devote myself to my family. I don’t have to feel guilty about forcing a financial burden onto my husband. I don’t have to push through chronic pain to make ends meet anymore.

For the first time in such a long time living with this condition, I have choices. That is everything.

And if you are suffering in yourself the way I have these last few months thanks to this travesty of a system, I beg you to hold on. If for no other reason than I know you bloody well deserve to.

Priorities

Earlier this month, we took Squidgelet away for a week, our first family holiday, to a caravan park in Newquay. It was one of the best weeks of my life. We were determined not to be constrained by time or routine. We were going to do whatever we wanted, whenever we wanted. It was bliss. Squidge loved having her own room in the caravan. The light switch was right next to her bed and she was determined that it would always be day time, so she could go and play. We told her to knock on our door each morning and we’d talk about what she wanted to do that day.

The first morning, she knocked on the door: “Mummy! Daddy! I want tea!” As we looked up from under the duvet, she was holding her swim nappies in her hands, having swiped them from her suitcase. “We go swimming.”

We all laughed, it was so nice letting Squidge take the lead, having all the fun she wanted to. She has become very matter of fact and straight talking, which I just love.

We spent our days at the beach or park, riding trains, going to the on-site soft play or pool, always going to bed via the penny falls. Squidge even dunked the 1000 point skeeball where Kev and I failed.

She’d go to sleep and we’d sit on the outside steps listening to the sounds of people glad to be on holiday, talking about how happy we’d made our precious girl that day.

Coming back was hard because I had my PIP Assessment to dread. I’m not going to elaborate yet because this stressful journey is not over for me or millions of others. Suffice to say, I despise that I am made to fight so hard just to live.

Emotionally it’s a terrible position to be put in. As ever though, Kev was my saviour. We went straight out, back to the hotel we had our wedding reception in 4 years ago.

This was how we celebrated our wedding anniversary whilst we were away:

But we’d always said we’d go back to the hotel each anniversary, to our favourite corner of the bar. Our spot.

He let me soothe myself with cocktails with daft names then I went off for a massage I so needed. Then off to the lovely Italian restaurant we ate in the night before our wedding. Two bottles of rose down and I’m laughing, my head hurts less from always being so busy.

I honestly thought I might cry after the assessment, through relief or pent up anger. I was truly surprised when I didn’t. Instead, I was taken aback when I suffered tension headaches and dizziness for the rest of the week. I honestly think it was all the stress begging to be released.

I didn’t enjoy returning to work either. I know no-one does after a holiday but oh, I just wanted to be with my girl, to lose the concept of time and stress, to enjoy.

So whilst financially it may not be time, I think I have shown myself I am done with working. In comparison to my family and feelings of peace, my ability to financially contribute means so little. I really don’t care to sustain it at the cost of my own health and happiness, when once I was sure I had to.

But my priority now is this wonderful family. It’s a relief to know that for once, all of me is in agreement. Life is for living after all.

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!

Thank You For Being A Friend

You’re halfway across the world right now. You met a boy and moved halfway across the world to be happy together. The day you told me you were going, I smiled and hugged you goodbye, full of happiness for you for the adventures you would have that I’ve never been brave enough to dream of. But as we waved you off on the coach that day, I burst into tears and said to Kev “She’s my best friend and I’m never going to see her again.”

You haven’t come home yet, but you’ve also refused to fade from my life as I feared you would. Not through any fault of your own of course, your priority has to be the life you’re building now in the sunshine. I feared it would be down to me, never managing to keep up with time differences, struggling to think of constantly positive things to say, even when they existed, because I was struggling so much. I didn’t want to blacken your new life by being honest about the extent of my struggles, even though I knew you were one of few people on this earth I could share them with completely.

I struggle to do that with a lot of my able friends but you’ve never tried to advise me, like it could come from a place of knowing. Your face hasn’t ever contorted into nauseating sympathy. Instead, you’re the friend who I trust implicitly to say “That’s shit. Let me get you a drink.”

I so need that in my life. I need you. That true friend that normalises me because it’s never occurred to you to treat me any differently. Thank you.

Because of you, there are beautiful blooms here with me for Mother’s Day. From all the way across the world, you decided to celebrate my greatest achievement with me. Because you absolutely know that that is what Squidge is for me. You’re not obliged to value that in any way but you do because you know I give it my all.

These beautiful flowers will meet their inevitable end in my hands because I’m terrible at remembering to water them. But I know you know that about me. The fact you thought about me is enough to make me smile every time I walk past them. I like having a little bit of you back with me. The note that told me what an incredible mum you know me to be to my precious girl made me feel like you were stood next to me, chatting away. It made me happy.

So, even if I am inevitably rubbish at checking in, know that I love you. You are the best friend all this growing up gave me. You are, as I discovered yesterday the only woman besides his wife and mum that Kev has ever deemed worthy of buying dinner for. That is to say, we know how lucky we are to have you in our lives (and if he didn’t pay, he bloody well will when you’re back on these shores!)

I love you, darlin’ girl. Thank you for always being my friend from everywhere you are.

Facing up to the reality of stress

Months ago, I took myself to the GP and told her that I was overwhelmed and sad. She referred me to the Mental Health team who have in turn, given me the opportunity to attend some Stress Controll and Fulfilment classes.

I went to the very first session of the Stress Control Group yesterday. I was anxious about it all day, nerves writhing in my tummy. I couldn’t concentrate and got very little work done. So a stress course was essentially stressing me out, making me feel guilty for not applying myself to my paid work. Ironic isn’t it? But I walked to the venue, I walked through the door. Three people in the queue ahead of me asked to be directed to the same place, so I didn’t even need to feel daft and just walking into that room felt like such a big achievement. I was after all, there to help myself.

There were so many people in that room. It was amazing. You always think that you are the only one, when in fact, stress is as common as can be, causing so many related issues for us all, like constant physical pains. Who knew, right?

I felt quite panicky just being sat there and could feel myself losing my sense of “being in the room”, spiralling off into my own panic. I wanted to cry for all the struggling people they talked about in the case studies, I wanted to get up and run. It was hard to listen, though I laughed to myself when the course leader said exactly that – that concentration is always poor when we’re stressed and anxious. But she also kept saying that I was in the right place and it made me feel braver, safer.

I can’t pretend I listened well for the whole two hours because I know I didn’t. But some snippets really resonated with me.

We all have stress in our lives.

None of us can change what has gone before, so why waste emotional energy overthinking what you cannot change? What’s ridiculous is, I of course, know this, but hearing someone, a professional, say it out loud, the little monster that lives in my ear unclenched a little bit and stopped dead. Because it’s so true. You have to go on. And in spite of everything I have told myself I am not capable of, the one thing I know I am capable of is going on – nothing has killed me yet.

They told us that stress feeds itself on all your other stressors. So if you spend a long time feeling stressed and overwhelmed, chances are the thing that stressed you this week is not the thing that set off the stress of last week. You have to find ways of cutting the little monster off. And hopefully, that’s what these courses will enable me to do, to find happiness in the little things and to feel real pride for all my achievements.

And here’s my first one:

Our homework was to draw out our “vicious circle of stress” – all the things that stress us and how they manage to keep themselves going, so that we could try and work out ways of starving the stress. Now, I didn’t get that far, because honestly, my circle was far too busy to be a circle. A list of stressors came pouring out of me. And when I read it back, I realised that for years now, I have been dealing with a lot!

I haven’t necessarily dealt with these things well, these are things I am looking to learn, to help myself. But nevertheless, I am constantly dealing with a lot, even outside the standard “marriage, child, house” that it’s likely everyone else in that room was dealing with. I have pain, I have limitations, which in themselves need a lot of work on acceptance before the anger wins. I have uni, I have long-distance relationships to maintain and a lot of memories to process that have hindered my sense of independence and self-confidence.

And suddenly, I felt proud of myself for being able to carry on. I’m going to give myself less of a hard time. I never feel proud of myself. Me, myself & I have pretty much always struggled to get on, so honestly, this was a great start.

The mantra of the stress control course is something like “Face your fears. Be more active. Watch what you drink.”

Avoidance is a huge crutch of mine and the course already recognises that avoidance does work to control stress in the shor term. But avoiding your fears just builds them up into a more deep rooted problem longer-term and to be honest, I think therein lie a lot of my problems. They’ve gone unfaced for too long and have become a horrible, stubborn part of me that I hate, but that really has quite a grip on me.

So I’m trying to take the mantra to heart already, even without realising it.

The day before the course, I walked Squidge to playgroup. She needs constant bribing to get in the pram now because she’d rather walk, but we did OK.

She was patient, she listened (she even collected the Deep Heat lotion for me that morning when I was on the floor complaining that my “neck ow!” She handed me the container saying “Mummy medicine neck ow!” I was so blummin’ touched. She went into playgroup without a backward glance when previously she’s refused to go in without clinging to me. Well done Squidge, my big, brave, grown up girl.

Enjoying her soup before Wednesday’s playdate

I pottered round town, buying all the bits we needed and then I went back for me. She wolfed down some soup and went for a nap in preparation for a park playdate we had with a friend. But she wasn’t ready for me to wake her an hour later and howled like I was beating her whenever I made moves to get her dressed. She clung to me, sobbing, only comforted when I rocked her like I did when she was newborn. I felt awful, that my baby was so upset, that I couldn’t dress her, that we’d be late, what my friend would think.

As it was, we were only ten minutes late and my friend couldn’t have been kinder – and Squidge couldn’t have been more delightful, cooing over her baby boy and guzzling her babyccino like a pro.

Face your fears – I didn’t allow myself to cry off and let a friend down, or let myself feel terrible for doing so, like I didn’t deserve friends. I told myself (and Squidge!) that she was getting dressed because I knew we’d (both!) appreciate the experience much more when we were there.

Be more active – Two walking trips to town and back. Well done me!

Watch what you drink – I got a 12 bottle box of wine at cost price from work for Christmas, so I’m not gonna lie, I have been caning the rosΓ© (which for a lightweight like me means 1x large glass, so only just topping my 14 units/week (maybe?) I’m probably not drinking to medical excess even now, but I know it’s still more than I really should. So yesterday, I had a small one.

See? Wins all round!

And today, I met up with another friend and her little girl at mine & Squidge’s favourite soft play and then they came up to play at the playground by our house for some outdoor time. They ran off to the basketball court together to run about and when they came back out, they were holding hands like the best of friends. My heart felt so huge with love in that second, I felt so happy.

Playing with her lovely friend on the “tee-taw” today – and absolutely not looking at Mummy’s camera!

The lovely mobile hairdresser came round too to check how I’d gotten on with the ponytail tuition and would you believe – I actually did it! Even with my weak hand, I got my hair up higher than I ever have before, so I have the skills there now. Just more practise and then I can learn a messy bun to go with my messy ponytail. (So relieved these are in fashion because these are what comes naturally to my wonky hands too!)

I am very proud of me. Because in these last 3 days, I have done a lot to benefit myself, which in the end can only mean the best of all things for Squidge. A little less avoidance from now on. Let’s see what the best of me looks like!

2019 – The Year of Self Care

So we’ve ambled into yet another new year. I won’t insult you with the salutation “Happy New Year” because honestly, I know for a lot of people, it isn’t. We put so much damn pressure on ourselves to make changes, do better, and is it really worth the emotional burden?

This year, I have decided not.

I have made resolutions, don’t get me wrong. With a view to being able to work less (because I ache, so much, so often) I want to make it a habit to save as much as I can, to make smart choices and not be wasteful. But that sentiment doesn’t just apply to money. It’s so absolutely true of energy too. Energy it turns out, is the most precious (read: lacking) of all my resources and I have wasted so much of it (even in years where I was so much less hindered by my physical state) wrangling with myself, being so angry at my failures or inabilities.

But it’s such a waste. To be so constantly exhausted makes me angry. To be so angry and embittered exhausts me. And round it goes. And I have to make the choice to break the cycle.

I have battled with negative self thought all my life. Mostly, I don’t like to be me. And it’s OK to say that. This existence is a battle and I don’t have to be ashamed of that because I’m still here, I haven’t given up. I’m too damn stubborn to give up, even when it feels like I should, just for the rest.

I don’t pretend I can just flick a switch, or that the nasty little voice in my ear will just be gone. It will take work. But I have chosen to accept that negative thoughts will happen, as they do to us all. I just need to be able to balance them with positive ones too. I think I need to hear myself say that I am doing well, to give myself chance to believe it.

And so far this year, I am doing OK. I have arranged play dates, I have spoken with friends and family. I’ve sat and made practical decisions like a portable screen riser so my poor neck doesn’t have to ache quite as much when I’m out of the house writing essays.

I even paid for a lovely hairdresser to come and show me how to do a ponytail. And what’s so daft is that I was so embarrassed to do it. I’m nearly 30, with awkward hands that just don’t know how to do the simplest things with my own hair. But maybe that’s not the fault of the hands. No-one ever showed me, because…. I don’t know, it was too hard? And how can I hope to know what I have never been shown? So I have taken that step. The lovely lady was probably 10 years younger than me, but she didn’t judge me for a second. I did, getting frustrated with myself when my hands wouldn’t follow her simple instructions.

But she saw that in me and was so kind, arranged to come back and show me the next step in short bursts. And I’m fortunate that messy ponytails are in, because that’s what we’ve got. I finally managed some semblance of a ponytail, all by myself, and mixed in with the embarrassment was a tinge of pride I am determined to hold on to. I’m going to push myself and I’m going to learn 1 way, 2 ways, maybe even 3 ways to do my own hair, so that I might look a tiny bit different for the first time in forever, to make me feel good. Why on earth shouldn’t I ask for help in doing that, if it will make me happy?

This will be the year of investing in me, of giving myself a good talking to. So it won’t just be “You didn’t bother to do x, y or z today Jo”, it will be countered with “Yes, but today, I needed to rest/do nothing”. It’s OK to take care. No-one else will do it for me.

And that’s OK too. I like to feel in control, of feeling like I know how to get the best out of this year.

I really hope you do too. I have no doubt that you deserve it.