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 rosé 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 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.

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.”

Medical fatigue

I don’t know if it’s an actual thing but I bet any disabled person would recognise the frustration and the impact of medical fatigue. That is to say, having your life run by a never ending cycle of appointments meant to maintain you.

I have spoken a lot about the impact that the deterioration of my condition is having on my mental health. I feel fragile often, overwhelmed regularly and cheated pretty much always. But I choose to own my feelings. I will not deny them because I finally agree that I am important.

But a new battle is apparent.

I cannot live my life how I, as a person, a mother want to live. I am not afforded that level of control.

Because even when I am able to stop working, maybe have another child and cherish my family, I will always be beholden to an ever growing roster of appointments.

At the moment, I am still trying to maintain my hours at work because know, money’s useful. But actually at the moment, I’m averaging 3 hours a week on appointments, not even accounting for travelling in the first place. The two together is draining me.

Yesterday was podiatry to talk through my hip pain when walking. Didn’t get much from it really. So instead I need to go back to the Functional Electrostimulation clinic and see if they have anyone that can support me. (Their little box shocks my weak leg into pulling straight. Using the leg as it should be after 30 years is strange and pain is to be expected I’m told!)

Today is physio and then counselling. Both absolutely necessary, the former of which takes 6 hours because I have to get the train because I can’t safely drive the distance. This results in less time with Squidgelet cos I have to swap my days off to accommodate.

Then there’s massages which constitute my most peaceful hour of the week. I wish it could be more often.

I know they all have vital functions but my God, can there just stop being things I must do.

I’m starting to feel more like a condition than a person. That has a real emotional toll. And so round and round it goes.

Medical fatigue is real.

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.

Love Letter to my Little One vol. 2

I am big girl, you would say. To me, you will always be my baby. You, baby big girl are my reason for everything, especially right now. I can’t expect you to understand just now, but I think you understand more than I realise. This is a note for the big girl you are becoming, to explain.

Just now, Mummy is broken. The culmination of the emotional trauma of the PIP forms, knowing we are not done and really struggling with the physical stress and deteriation of cerebral palsy have burnt me out. I am exhausted in every way. I have had a nervous breakdown and I am fragile. But I will not be ashamed to call it by its name. Your mental health is so important Squidge, please learn from Mummy never to neglect it.

I have felt depressed and frightened and lost before. But never have I felt so helpless and defeated and stuck. Previously, I would have wished desperately to be someone else, to make these pains in my mind, body and soul go away.

But the reason I am telling you all this, darling girl, is that even at my most vulnerable now, I do not wish that.

Because no matter how unchangeable all my struggles may be, neither my mind or the painful inevitability of my condition deteriorating can affect the fact that I have you.

For all the struggles of this life, it made me your mum. It is my most treasured identity. I understand what is needed from me. I couldn’t want to succeed at anything more. Thank you for giving me that precious anchor in a world that would otherwise consume me.

Your dad and I will not allow it because I have you and the promise of your future to live for. I’m not sure you’ll ever understand what that gives me.

It is so important that you know I am not your responsibility. I am your mum because I made that wonderful choice. You are my motivation. But one day, you will be an even bigger girl and I want you to have the world. Grab it with both hands and shake it in all the ways I never felt able or brave enough to do. You are not to stay and worry. I have your dad for that.

Mummy’s differences are not ever to impact the life you want Squidgelet. I just wanted to tell you that on my darkest days, you got me through. To me, you were remarkable. You were just being you.

The Only One Who Sees Me

This heat with a 2.5 year old who’s very emotional and trying to establish (read: push) her boundaries has been so tough. I have been in tears, I have shouted and I have hated myself as a result. I never wanted to be that mum.

Not able to lift her and soothe her during a crying fit in our narrow hallway the other day, I shouted, turned away and cried so hard I couldn’t catch my breath.

Squidge’s tantrum stopped dead and she crept back in, frowning with concern before she came and placed her baby’s bottle in my mouth because she knows, when babies cry, they need milk. My beautiful girl dried my tears.

Yesterday, we were planning to travel across the neighbouring city on the bus to see a friend and her girls. So looking forward to it. A big ask, but it felt like it was doable with Squidge mobile and the walker. People would know I was disabled, no worries about putting the pram down.

Except, walking with Squidge sat on the walker, every journey is twice as long because the wheels get caught between paving slabs, because the anti-tilt means I have to turn the walker round to pull her safely up and down kerbs. For an aid that’s meant to help me, I have to pre-empt everything. It gets tiring.

I had to coax her off the walker onto the bus so I could lift it up. She went to find a seat but I took so long sorting out my ticket that she came running back, crying for me not to leave her. I had to promise to finish my purchase at the other end of the journey and went to park the walker in the space. A kind lady took Squidge into her lap as I struggled, because the bus had already moved away. I’d planned to sit on the walker facing Squidge but my balance on it was so precarious, the kind lady insisted I take a seat, holding out her hand to me.

“You shouldn’t have to struggle like that my love” called out another lady. “That’s what the disabled seats are for.”

She pointedly looked at a lady in said seats with a shopping trolley who muttered “If she wants it, she can have it.”

I didn’t say anything. After all, I didn’t know the lady’s circumstances but it was quite hurtful not to be addressed directly. It just makes me feel like people are too embarrassed to recognise me.

The second lady, having watched me struggle to sort my ticket, asked if I shouldn’t get a concessionary bus pass. I told her the truth: “I was allowed one in England but the rules in Wales say not because I can walk.”

“That’s disgraceful.”

The first lady chatted with Squidge and I all the way until her stop. I wish it could have carried on that way.

But to the busy city crowds, Squidge and I were instantly invisible. She wanted to walk with me after so long sitting on the bus so well. I walked her not 50 feet into the bakery to get a drink. People leant round me and the walker to grab things as I talked Squidge through the options in the fridges and when we were waiting for someone to step back and let us leave, at least half a dozen people walked through the door with no thought to the fact the walker or indeed, the toddler might need a bit of room to vacate.

“Oh for God’s sake!” I fumed quietly.

“No Mummy!” Squidge reproached sternly. “No say that!”

I smiled. “Sorry baby, you’re right.”

Then a group of schoolkids came racing across the pelican crossing that I was trying to judge as flat enough to roll Squidge across in the walker. They were coming right at us but I thought “They can see me, they won’t run at a walker.”

I was wrong. They swarmed me, Squidge and the walker and I felt myself tense in preparation for a fall. It didn’t come but my nerves were so on edge in these crowds with uneven pavements that I screamed angrily after them, with no effect obviously: “Yeah, don’t worry about me.”

We waited for the green man as the city crowds ignored his absence and ran across the road anyway. When it was time, we went across the road to the stopping point in the middle, except the walker hit the lip unable to push up. Crowds kept coming as I felt the walker tilt and began to panic. To stabilise, I knew I needed to turn it round to wheel Squidge up safely. I tried to do it as quickly as her safety would allow but the crowds just kept coming over the crossing. No-one cared to see us there struggling.

I finally managed it, my stress increasing when the same happened again. Why could no-one see me?I felt the walker lurch again and cried out in panic: “Oh God, are you OK baby?”

Finally, without a word, a man reached down and lifted the walker over for me onto solid ground.

“Thank you.” I said. “You’re the first person that’s bothered to see me here today.”

How could so many people be so wilfully ignorant to someone with a mobility aid, with a child struggling? I could never do it, even though I’d be little help. I’d have to try.

The simplest things were beginning to feel too hard and behind my sunglasses, I began to cry. The city was busy and loud so I didn’t bother trying to muffle the sound, half wishing someone might slow down and ask me if I was OK or needed help. Nobody around me did.

Instead, my beautiful girl said: “Don’t cry Mummy.” Oh, how I loved her then.

“I’m so sorry baby. I’m sorry it’s this hard.”

I tried to coax her onto the next bus to our friend’s.

“No” said Squidge.

I was stressed, so terrified she was about to throw herself down in the street for an emotional tantrum.

“Please darlin’.” I pleaded. “I can’t lift you with the walker.”

But she didn’t tantrum at all. “My no want to go on bus.” she said calmly.

What was the point trying to force her? It just doubled the journey and effort of trying to get her home safely when I’d be in pain from the effort. I think she knew that.

“I go home and see my daddy.”

“OK baby. Shall we go get an ice cream from Maccy’s first for Mummy’s superstar?”She walked all the way until she recognised the Golden Arches. I text Kev, telling him how defeated and tearful I was that I was so invisible here, that I was ashamed I had let my friend down.

(I shared the same sentiments when I apologised to my friend. She promptly told me I shouldn’t dare to feel ashamed for trying as hard as I had. I love her for that.)

I also told Kev that Squidge had been such a comfort, I would buy her another ice cream if she wanted. I took her into the disabled toilet to get changed.

Hot, beaten and emotional, when she sat up, I asked: “Can I have a hug?”

She gave me the sweetest tightest cuddle yet.

“I got you Mummy.”

I broke down crying in my toddler’s arms.

“I’m so glad you do, baby.”

She was only coaxed onto the bus home by promise of seeing her daddy again.

She was exhausted, meaning the decision not to carry on our journey across the city was the right one.So sweet right? Except I was full of dread. I couldn’t carry her from the bus and the walker. I’d fall. I needed her to walk off the bus. So I had to lift her into my lap and rock her awake, cradling her head against injury thanks to the erratic braking of the bus and throwing us forward.

And today, my shoulders and wrists hurt so much from the effort of having to lift the walker up over every uneven paving slab out there that Squidge even attempted to lift it for me.

I cannot describe how sad I am to live in a world where only my 2 year old daughter cares to notice how hard it is becoming for me to get through every day. It’s so bloody shameful.

But I could not be prouder of you baby girl. Thank you for seeing me when the world ignored me. I’m so glad to have you. I know now more than ever I couldn’t do it without you.