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.

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.

The Part-Time Part-Timer

This is the name I have gotten for myself at work. At first, it was playful banter. Don’t get me wrong, I work with a brilliant bunch of people and am fortunate enough to have the most supportive boss in the world, but recently, it has niggled more and more.

My life has always been in many parts. I can’t explain why I prefer to compartmentalise my “beings”, but I just find life easier to handle this way. And of course, my most important “being” without question is as a mummy.

So when I went back to work part-time in 2017, I smiled when the nickname arose. “I get to spend 2 days at home with my awesome baby girl, don’t hate me cos you ain’t me!” was pretty much my uber mature response.

When I was allowed to start working from home to ease my physical demands, I was in the office less, the nickname used more. Never with malice, this I know. Many people in my team are fulfilling much more complex roles than I am and all power to them. I work to live and I am not a career girl. I did not dream of climbing a big corporate ladder – I wanted to be a mum. So I am more than happy to muddle through on a part time job. I am fortunate enough to do so because my lovely husband is willing to shoulder more of the financial burden.

But it occurred to me, outside of my boss, who allows me to be very frank when I say how physically and emotionally exhausted I can get, no-one has actually asked what this new chapter of my life is like for me.

Not Social Services when I pleaded for help with my newborn, not the health visitor (who, by the way, still hasn’t called on us in the 18 months we’ve lived in this house, not even after our dash to A&E when Squidge decided to lick a washing tablet, but hey ho, just as well she’s fine eh?) I haven’t been asked about how my disability impacts my life since my days working in classrooms, when 10 year olds would inquisitively question what it was that made me walk funny.

No-one has asked me about this life in 4 long years.

And I suddenly feel that I want to tell them all, because they need to know.

They need to know that no matter where I am, I work all my hours (which, actually is 4 days worth, not 3.) I’m the first in and the last out. I’m not spending my days off on jollies, as much as I’d like to. Lunch dates are few and far between, because what I’m actually doing more often than not is catching up on sleep. Because I don’t sleep. Probably because my back was hurting from sitting in my office chair for nearly 11 hours, or because my leg muscles seized again and walking is too hard today.

I don’t just get to fill my days with trips to the park and evenings in the pub because there’s no work tomorrow. More often than not, I’m slumped half-dead on the sofa by 7:30. I daren’t make evening plans with a friend because I’ll inevitably cancel through exhaustion. (I last went out 6 months ago when I went to see Ed Sheeran. I gave myself almost a year’s notice, made myself nap for an hour that afternoon and still was exhausted by 10pm and Ed was nowhere near done!) I have very little hope of a social ife because I need to take care of me first. It’s so damn sad and yet, it remains all I get.

Work less hours then maybe? Well yes, but then how does the mortgage get paid? Do I not have the right to work and provide for my daughter? God forbid, I just become one of those “scroungers” on benefits. I detest that term by the way… do not judge it til you’ve lived it. And ironically, we’ve looked into it – I’m entitled to nothing from the state, despite the fact that I’ve paid in, or that I struggle to get through every day. And that would be fine were it based on any insight into my capabilities. But it’s not. It’s based on my husband’s income. Not even just my own. But his. And we’re too “rich” to ask for help, even though me having no income at all would probably put us on the breadline. It’s ludicrous, so work I must.

Give up on my degree maybe? I’ve thought about it, but this one thing is just for me. Something I work hard at, something I treasure, something I’m determined to show both myself and my daughter I can see through, that I am capable of anything. I’m determined to give myself better options for when the life I’m living now is no longer sustainable.

I’m giving this life my all and if you knew me well enough to ask, you’d realise that far too often, I’m left with very little to give.

And even on those kind of days, you’ll still see me at my desk. I’ll already have been there for hours by the time you come in at 9am. I’m not judging you, am I? I sincerely believe in work-life balance and think everyone should work to rule and get the Hell out by 5pm to go and live life, to be with your family. If you don’t agree, fine. Go get that promotion by next year if that’s what will make you happy.

But please, don’t call me a Part-Time Part-Timer. Yes, I work part-time hours at this job, but, my God, I am full-time everything else.

Acting Your Age

Strangely enough, this post is about me, not the Squidgelet. She’s having no problem acting her age. She is great most of the time – She sweetly says “Please Mummy” whenever she wants to steal some of my breakfast & “Thank you Mummy!” mostly unprompted when I hand over said breakfast that I probably didn’t need to eat anyway.

And then there are the fantastic tantrums. They wash over me now because it’s not worth getting frustrated at a little person coming to terms with the surge in their own emotions. I’m worse than that. I tend to find them funny – my favourite so far being when she threw herself onto her bedroom floor utterly distraught and screaming because we wouldn’t allow her “Caaaaaake!” before bedtime. (Definitely my daughter people!)

It’s me struggling. I’m 30 next year. All around me, people are living. Maybe not their best lives but their lives are still full of energy. I meanwhile, am exhausted and fear living like a pensioner many years before my time.

I got up just after 7am today because my eyes sprang open as soon as the Squidgelet called. I haven’t slept in properly in weeks and I rarely sleep through either. I went to the hairdressers to get my hair done in time for our holiday and then I went and grabbed some bits from the supermarket. I was home by 2:30 – and yawning. I fell asleep sitting on the sofa which I only realised when my elbow lurched off my knee meaning my chin was no longer propped up. And why… Why am I so shattered?

Kev asked if I wanted to go nap which is a sensible question for me now. I refused… not because of the stubbornness of old but because… what’s the point? Unlike the other 29 year olds out there, I have no sodding use for any scrimped for energy. There’s no Saturday drinks and dancing heading my way is there? My energy’s too spent on getting through each day for invitations like that to still be coming my way.

And I understand. There’s only so long that you can flog a dead horse after all. Problem is, I worry I might be the dead horse… just with another 40 or 50 years of this utter exhaustion before I’m actually dead and done. It’s such a sad and scary prospect.

My little girl is going to be grown up and gone before I know. And I worry my energy will be all gone by then… Maybe taking my friends with it. They have been so understanding… They always say “Oh… life gets in the way.” But it does… more than I think they know. And I’m just not sure how to be OK with a body that conspires against me. I miss fun.

Still so full of pride

I am currently full of a lot of mum guilt.

I feel like I am not giving the Squidgelet any time at the moment. I’ve spent my days off either working on my uni essay (submitted 3 weeks ahead of time to compensate for our holiday in 2 weeks) or ill and therefore avoiding her.

And germs. Let’s not forget the germs.

Week before last I had norovirus, so the in-laws came and rescued Squidgelet before I could infect her. I woke the poor love up with my vomiting in the bathroom next to her bedroom at 6am. It’s hard to console the concerned calls of “Mumma? Mummy?!” between retching. I was better in time for my big sister’s wedding and Squidge had a blast, running around, dancing to Baby Shark and eating her bodyweight in cake,

But last week, I had physio, which is miles away, very expensive and therefore cannot be missed. It takes nearly a whole day. I recently changed my days at work with good intentions and then realised my physiotherapist is only available on a day I’ve agreed to work. Now, I only go every 8 weeks (see, expensive!) so my boss is not bothered by an infrequent swap but it does mean a day less with my girl every 8 weeks.

And now, just in time for my very first Friday off with Squidge, I’ve caught someone’s cold. I am an absolute germophobe and am enraged by ill people coming into the office. Work from home you selfish [insert favourite swear word here]. So instead, we’re £45 out of pocket sending Squidge to nursery for the day so I can concentrate on sweating out the lurgy in time for the weekend.

Mum guilt sucks.

I feel terrible about going on holiday even. We’re finally going to Cuba – the honeymoon destination Kev picked out for us 3 years ago that was scuppered by Squidge’s very presence in my belly and the threat of the Zika virus. I am really looking forward to it, as it is to be our last “grown up” holiday before we give in to ten years of Butlins and theme parks. Yes, I’m a terrible mother who’s leaving my baby behind. But I’m being very measured about that of course. Not. I’ve reiterated to another of my big sisters that I want her and her partner to raise Squidge alongside their daughter if the plane crashes out of the sky.

Happy holiday everyone!


Mummy madness aside, today, Facebook memories threw up this perfect little gem from one whole year ago.

I never knew pride like it. She’d been cruising and holding our hands from about 8 or 9 months old, but we were just playing on the bedroom floor and she got up and she just did it, like she was made for it. Her confidence (unlike my immune system it seems) has gone from strength to strength.

Squidge really is flourishing. We have a playground on the opposite side of our road and I’ve been bundling my gorgeous girl up in the big warm, winter coat from last year that she’s grown in to and we’ve been kicking and crunching the autumn leaves, I’ve been listening to her shriek with delight as she runs around shouting “Ready! Steady! Go!” at the top of her little lungs. She is so “‘appy!” (That’s our current favourite Squidge-ism!)

She’s been really getting to grips with her alphabet, throwing her alphabet bricks around the lounge when the mood takes her, or calming handing them to you one by one and more often than not, correctly declaring the letter on it. (My favourite is “Ah-oh-woo!” – W!) She did the whole thing flawlessly the other day – Kev was staggered.

And so, while I sit in a million layers, sniffling in front of the fire and feeling sorry for myself, I can take absolute pride in how my little Squidgelet is coming on in the world. And maybe the guilt can lessen a bit because this one is her own person and she is doing just fine. So it’s OK to take care of me too – I’ll be back crunching leaves in no time!

The Battle for Baby #2

I mentioned earlier that I have been suffering with anxiety and feeling overwhelmed by the sheer number of elements in my life.

Last week, like a kick in the chest, I suddenly was able to give these anxieties their unspeakable name.

“I’m not sure we should have another baby.”

Now, permit me to be clear…. Being Squidge’s mum has shown me what my purpose is in life. I was terrified to become a mum, so scared of failing my baby, but I loved her from the first second I put my hand on my belly on the way home to tell Kev I was expecting. She is mine, she is the light in my life.

I want nothing more than to go through the experience again. I feel as though I know more what to expect now, and I want to appreciate the miracle that pregnancy is, I want to take the time to appreciate the amazing things that my body, normally wrecked and ruined, can do.

But….

Parenting is hard. It is so very hard. I am so tired, scrabbling to find the energy for other aspects of my life that I cannot let give yet.

Work being the first example.

I honestly believed I would work forever, just as everyone else my age is condemned to do these days. If I needed money, I needed to work, simple as. But it took Kev looking me dead in the face and saying: “You realise you can’t do this for much longer, don’t you?” to realise how damn tired I was. And he’s right. It’s not worth giving up the quality of the rest of my life to be able to bring in a wage. People survive every day.

And so, we mutually agreed that I should phase my working hours out. I like working. It gives me a sense of normality and of self worth. It wouldn’t do anyone much good for me just to quit working outright. And who knows, we might strike a beneficial balance along the way.

I am very lucky that I now have a very understanding boss, who, in his own words “lives in the real world” and always tells me to take care of myself and that I must “tell me how it needs to be, you don’t need me to tell you you come first.” He knows how hard I find the second point because I so desperately don’t want my condition to affect my productivity at work. But he hasn’t seen a decrease and so refuses to dictate to me. I really like that and I really enjoy working for him.

He already knows that it won’t be forever, but he too is determined to help me find that balance. He also knows I envision another maternity leave in my future at the company.

But can it really happen? Childcare alone prices me out of being able to work and enjoy the miracle of 2 children. Kev’s income currently is diminished by the amount we would need to survive as a one income family and my God, I already watch every penny I spend.

And so, I put the question of income to the wisdom of the internet, trying to bring our expenditures down. I explained about my condition and the need to stop working no matter what happens, and the want we so have for another baby.

I mention to the internet how I have aspirations to do my masters after my degree. Someone asks: “Why, if you can’t work?”

And I bristle, feel myself get defensive. “Why not?” I fire back. “How else can I invest in my self worth if I’ll be at home through no fault of my own with no job and no much wanted baby to care for, because it’s for the best?” I tell this lady about my aspiration to become a play therapist and that is most likely to be sessional work rather than a 9-5, which will suit my physical health better.

She replies: “If you’re adding to your skills, your financial worries won’t last forever. Good luck.”

BAM! She’s right. I’ve never realised it before. I have always been determined to see through my degree and the masters to show Squidge that no matter how long the road to get there, dreams are obtainable. I never even thought about the fact that if I keep going, I’m not simply crashing out of having any uses, or contributions to make. I’m simply taking my time to get there. Such a simple and powerful concept, but one I’ve never allowed myself to realise.

I have spoken to Kev about all of this. I was apprehensive when I asked to sit down, so fear ful that I will make him sad, squashing another of his dreams. I already negotiated Kev down from 3 children for my physical limitations, and we were set on 2. Having to let that dream go would break my heart. To break his would be a million times worse, like I’m punishing him for loving me.

But he said he was proud of me for being able to come to him in a measured way and lay out my worries. I didn’t feel very measured. I sobbed out my guilt and stress. I so, so want another baby. Not until Squidge is at school, operating a little more independently in her own little world, but I want to do this again.

And maybe we won’t, says Kev, but how can we know that now? Why am I allowing myself to get so overwhelmed by guilt I don’t even know yet that I have cause to feel?

And he’s right too. If we don’t, then, as heart breaking as it is, it’s for the best – and there are so many children out in the world we could help in one way or another. If we do, then it will take a lot of planning, and there can be no baby before we’re ready and happy with the plan in place.

So there is money to save, care to take of myself and time to take. Because it will be hard, but thanks to the lady on the internet who made me remember that those tough times have a time limit. They cannot, and they will not go on forever. It could well be 2 or 3 years before I give up work completely. By then, my BA will be in hand, Squidge will be at school. And if I choose to pursue my masters, we might be in for 5 hard years. And that won’t be fun. But at least it has a number, like the sadness and anxiety has a name.

That is so much better than the unknown. I need to remember that.

What CP is like for me

This is my contribution to a project of a new charity – Adult CP Hub.

Adult CP Hub

They are looking to bring awareness to how damn hard it is to age with this condition and I need to get behind it or I’m doing myself and my baby a disservice. I really look forward to seeing the finished film.

I wanted to share my video because it’s the easiest way to articulate some of the struggles I am having at the moment. This, right now, is me.

Please excuse my wonky eye… that would be my squint, I promise I am trying to look at the camera!