Did I make you uncomfortable?

I’ve written before about earning the nickname of The Part Time Part Timer at work.

I made a flexible working request with my boss, who was brilliant and let me work from home as much as I deemed necessary without another word, so long as I was taking good care of my body and managing my pain.

It means I’ve been out of the office a lot more, seeing a lot less of even my colleagues on the field.

My boss tells me I should care about me and not what anyone else thinks of me, because my life is no-one’s business. He’s right of course, but I’m a born worrier.

I decided to try and take control of how rubbish the ill-informed jest made me feel. I know no harm is meant but that still doesn’t give such words the right to make me feel so bad.

So I decided to be honest. To share the details that would otherwise be missing from colleagues understanding about my absences from the office.

Someone asked me for some paperwork I hadn’t seen. I couldn’t find what they asked for. They said it was time sensitive and asked “Do you mind if I have a look? You might not have seen it…”

I moved back and started to say: “Of course not!” when they finished “…because you’re never here.”

My defense tightened in my chest. I knew they meant it in a light-hearted way but enough. I had the right to speak a truth they might not be aware of.

“Actually, I’ve had to work from home a lot more because I’m finding I’m in more and more pain.”

But they were talking again before I’d even finished the sentence.

“Oh, I shouldn’t have said that.”

That told me they weren’t really listening, batting my words away.

And why would they do that? I can only surmise it’s because the truth made them uncomfortable. I wonder if I’m supposed to feel apologetic. Because I don’t. My life, its ever increasing limitations make me uncomfortable every damn day. It’s only right to let that be the truth. I have to deal with it, it’s not my problem if others cannot.

Facing Fears

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

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

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

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

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

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

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

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

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

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

Face. Your. Fears.

Avoidance only offers temporary relief.

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

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

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

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

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

Exactly what I needed. Well done me.

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.

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!

My Squidge, My Sunshine

So, it’s 7:38pm. Squidge took herself off to bed without a fight at 7:02pm. Winning. It’s midweek, so these are my 2 days at home with her and Kev’s working late both nights. Which means Mummy has to step up.

And honestly, Mummy’s not been doing so well recently. A very dark and heavy cloud has been taking me over. It’s so hard to explain anxiety, but it makes the smallest things the very worst things that could happen. It means you understand logic, but disregard it because the fear is all consuming.

I made the decision to take myself to the doctor and say that it was getting too much to have my head always full with worry. The doctor was very kind. She told me that I shouldn’t tear myself down because of the cerebral palsy and that, with or without it, all almost 2 year olds have the potential to be little psychopaths that put mummies on the edge. But she saw my anxiety (the anxiety that said I should just cancel the appointment because if Squidge wouldn’t put her shoes on, then I was going to be late, and what sort of mother is late? I know the answer is all of us, but I just couldn’t feel it at the time.) She is going to refer me to the Mental Health wellbeing team, which feels like a positive step. I hope I can learn to take care of me too. I don’t want to feel sad, or like my life is happening around me without me taking part.

Kev leaves late because he’s away late, and when we go to get Squidge from her cot and ask her if she would like a banana and yoghurt for breakfast she responds enthusiastically: “Ite! Ite!” Ice maybe? I ask her if she’ll sit on my lap to bum shuffle downstairs or if she’ll walk down on her own. Confidently, she says “Own” and counts to 10 flawlessly as she comes down. Yes, shameless mummy bragging, Kev couldn’t believe what he was hearing! When I put on nursery rhyme Youtube videos for her and listen to her sing along, I realise “Ite” “Ite” was in fact “I like to ite ite ite iples and baneyeneyes!” from Apples & Bananas. Quickly run upstairs and declare our child is a genius before returning to parenting for the day.

But, in the vein of taking care of myself, we’ve agreed that Squidge should join the local playgroup for a couple of hours on one of my days off, so that I get the chance to rest. (And, the way my back is feeling after today, get more regular massages?!) felt like such a failure when I talked it through with Kev, but he didn’t bat an eye, said it was a good idea. And I know it is. She’ll get to spend time with local kids as well as her day nursery. But my God, Mum Guilt really does seep into every pore.

I took her for the visit today. We were ridiculously early, so we say on the pavement outside, me in a dress that thanks to Storm Ali was allowing the whole damn town to see my underwear at the same time! It’s funny the things you learn not to care about. We played peekaboo and Squidge laughed her wonderful laugh. It’s addictive.

We went in and she was shy to begin with, knackering me out by wanting to be lifted and carried to be close to me (awww, but – my back!) But 10 minutes in, she was scoffing rice krispies from the sensory tray and trying on glasses in the play-pretend opticians, telling me that they go on your “iiiiiiii’s!” and that she looked like a “little baby duuuude!” (I take a lot of pleasure in teaching her daft phrases!)

I know she’s going to be fine.

We shared a shortbread from Greggs as a treat and I walked it off by going to collect my parcel from the post office. (Christmas shopping is nearly done people!)

Mum Guilt snuck into my ear again when I realised I hadn’t taken her to the playground like I promised. Made a mental note to take her after her nap to the one across the road. Make an appointment at the hairdressers for fringe trim (I will never ever ever touch Squidge’s hair myself… CP means shaky hands!) Make it late in the hope that the Little Miss will nap.

Take her home and she makes a happy mess of some chunky soup and after a onesie pitstop goes for her nap bang on schedule. Don’t know what this kid’s on, but it’s working. She’s been so good, lieing back across my lap to help me change her nappies, pushing her arms and legs skillfully into her clothes to help me dress her. She’s been playing peekaboo, singing out her nursery rhymes, offering me cuddles and kisses and lovingly calling: “Daddy, wherearrrooo?” before answering herself with “Daddy vork!” (See, genius!)

It’s tipping it down by the time she wakes up from her nap (still bang on time!) and she screams at me when I try and put the rain cover on, much like she did when I tried to put her shoes on. So there will be no trip to the park today. Mum guilt reminds me that the park is always first to go and I feel guilty about never doing anything with her. I have picked up a leaflet from the library though and she’ll soon be old enough for the next phase of classes, so I have some ideas.

She’s a drowned rat by the time I get her to the hairdressers in her socks and no raincover. I passed a lady on the street with a look in her eye that I was so ready for if she dared say anything. I never do say anything. I know I should, because no-one know your struggles unless you say. But she never said anything, thank goodness and Squidge was free to end up with a Mummy-esque sloping fringe because she kept batting the poor hairdresser away. Never mind, at least she can see again!

Curse myself when I realise I forgot to buy any veg and tell myself the corner shop will have it. What is it with corner shops having impossibly high steps and ridiculously heavy doors? I struggle on my own for a good 3 minutes before a lovely lady offers to hold the door. I do wonder about people sometimes, it’s not like no-one else could see me. It’s also a horribly inaccessible shop to boot, I’ll make sure I have my Iceland list next time, I’m normally so diligent about these things.

They have no veg that Squidge’ll eat. “Oh no…. what shall we eat?”

Quick as a flash (she must have seen them on the shelf somewhere!) “Beans!”

“Oh you clever girl, of course!”

She helps me make a cup of tea for us both (hers is of course, decaf!) while our dinner cooks and she dries off in her new onesie. It’s miles too big and she keeps asking me to roll it up love her, but she looks so cute!)

Now that Squidge can feed herself, mealtimes are enjoyable, because I can sit and eat with her and it’s a social occassion. She asks for “help” as soon as she needs it and always tells me when she’s getting up.

We play on the floor together. She’s upturned her alphabet bricks so we see what each of them is when we put them back in their tray. She’s so funny, not grasping that they’re all jumbled and she keeps telling me what the next letter should be. Clever girl.

We run her bath and she washes all the body parts she’s learnt from Head Shoulders Knees and Toes (and more besides) with her big sponge while we sing the Bath song (to the tune of Baby Shark, because what else is there for parents?)

I know Squidge is done when she decides to start putting the sponge and her ducks away and my God, on her tiptopes she can reach the shelf they belong on from the bath. She’s definitely going to be tall like her daddy.

We spend time saying “Bye-bye bubbles!” because it’s only proper and we put her nappy and onesie on to a Youtube video of lullabies in the clouds that she slept so soundly to as a newborn. Squidge is not the least bit impressed when I tell her this, and keeps shouting in the direction of the Google Home “OK Guggle!” because no doubt she wants to watch Baby Shark one more time to round it up to an even million for the day. But thankfully, we don’t have a Guggle Home so Mummy’s safe.

She climbs the stairs to bed without complaint and switches on her lullaby night light herself. She only cries (and what a cry!) when she realises Freddie Fox is not waiting for her in his rightful place in the cot. Freddie came in Squidge’s first ever parcel the week she was born from my best friend. I love that my best friend introduced Squidge her best friend. It’s quite beautiful.

I planned to fold mountains of washing before Kev gets home, but considering how low I’ve felt this week, really beginning to doubt myself in all areas of my life, I thought it really important to come say that

Today has been a good day.

The Twos are Terrible

Squidge is 21 months now. She is much more physical and opinionated, oh the Terrible Twos have arrived. I cannot begin to articulate how much harder being her caregiver is. There was the planking incident when I tried to get her back in her car seat at the supermarket, the throwing her weight down as I carried her upstairs for the nap she wouldn’t admit she needed. She cries every night now when we leave her in the cot.

I ache constantly. I’m sleeping terribly. I’m so horribly anxious that Squidge’s every upset is my fault, that I’m failing her. I went to the doctors today and said as much. She was very calm and kind, told me that I will always be Squidge’s normality and I shouldn’t give myself such a hard time. But how can I not when I was seconds away from cancelling the damn appointment in the first place, because I didn’t think I’d have time to dress Squidge, get her in the pram and get to the Doctors without being late. I couldn’t stand to be late, because then what would people say about me?

I know logically, the answer is nothing. No-one really cares about other people as much as we imagine they do. But everything, everything is overwhelming for me right now. I know this because I sat at my desk this week and could feel myself drifting away. It was like I was trapped behind glass, watching my world happen around me in slow motion. I had no grounding in the world and I am pertrified of losing the control I have on my own life.

I am really struggling with the changes I have no choice but to make if I want to keep any semblance of a life going. Kev & I have agreed that come my first review next year, I am going to decrease my hours. I’ve had the discussion with my boss, who is so accepting and easy-going about it all, even when I essentially said: “I’ll have to quit in a few years anyway, but please let me do it slowly.” He lets me work from home so I can sleep in, he doesn’t blink if I finish early because of pain or because I’m still nervous about driving in heavy traffic. I’m very lucky. Because I don’t want to give up work. I take pride in the fact I can have my own money.

But it was Kev who made me see I’d have to sooner rather than later, that it wasn’t worth giving up my life over.

So there’s work. That’s going. Although I plan to swap it out for a Master’s course, so maybe it won’t be so bad, I’ll still have something that is mine.

I don’t take care of my own home. We hire a cleaner once a week and my mother in law insists on doing our ironing because I’m too terrified of my tremors around a hot iron to dare.

My in-laws were away last week and my God, it was so, so hard without them. Support networks are invaluable people. I was in tears every day, Squidge was asking for them and trying to make them cups of tea in the kitchen. I started to wonder, could this really be my life if I were a stay at home mum? And it seems that both Kev & I agree, no, it couldn’t. These are the reasons I so absolutely need Squidge to be that much older before we plan the next one, and we so want the next one.

People seem to think they’re being funny or helpful by telling me it’s best to have your children close together. It’s not best for me, but no-one wants to hear that bit, do they?

I’ve decided that Squidge will go to playgroup on one of my days off so that I can have time to myself, for a bath or a massage to sort out my muscles when the pain gets too much.

She’ll enjoy it too, more children to get to know… even better that it’s local and she might grow up with these kids. So why do I allow myself to feel so terrible about it when there’s no downside?

The in-laws came home and the next night, they had Squidge overnight and Kev & I went out for dinner to celebrate our 3rd wedding anniversary. I had a bath and preened, had my dress all ready. And then I went for an afternoon nap before our 6:30pm dinner, because this is just how I have to do things now if I’m ever going to be able to see the night through.