Today, I am my own hero

What you probably don’t know about living with cerebral palsy is I am constantly robbed of choices. If I have to get up and go to work (the bills won’t pay themselves) on the morning when the screaming pain in my hips says I won’t walk without agony today, then I can’t see that friend I’ve missed for months. I can’t play with Immy. I can’t go buy the milk. I am constantly robbed of my hard won independence and it’s simply not fair. It’s actually damn frightening.

But today, I can say for the very first time in my life, I am my own damn hero.

I have been blessed with a kind, helpful and inquisitive daughter who never questions why it takes me more than one go to do pretty much anything. She has made everything possible for me.

Yesterday I was limping everywhere, terrified I’d have to let down my dearest friend… who incidentally understand this life more than anyone else I know. I was so angry the choice might be taken from me. But we made it.

And today, I’m home alone. It’s all on me which isn’t normally the case. I was so worried. Immy knew, so she slept in til 9:30 to make this day easier on me than yesterday.

I’ve driven to the supermarket, I’ve carried the bags in one hand and held Immy’s hand proudly in the other. I’ve cleaned, I’ve tidied, I’ve cooked… all things I have to stop and check for niggling aches or pains that say it’s too much, that I’m not capable. They haven’t come.

I bathed Immy by myself. A job I avoid because I’m terrified I’m a danger, that I can’t protect her. I washed her hair (a job I NEVER do) and then I sat on the toilet seat with her wrapped up in my lap, brushed her hair and her teeth and got her ready for bed. She read 5 story books to me and flopped her head down on me, stroking my arm and whispering “Awww Mummy” before she took herself up to bed.

Today, I have been nothing but Mummy. I haven’t had to struggle through this day like all the others.

This is the day I’ve wanted to live since the day she was born. To just be Mummy.

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.

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!

So this is what a blog looks like…

Isn’t it just typical that even before I’d managed to type the oh so imaginative title of this, my first ever blog post that Squidge woke up?! Ah well, it’s Daddy’s turn anyway.

Squidge has been asleep most of the morning anyway, and I’ve been listing most of her newborn clothes on eBay. She’s only 9 weeks old and none of her 0-3 month stuff has a prayer anymore! Suppose I should be thrilled she didn’t take after her preemie size mummy!

Fair bit of pain in my back today. I know that a lot of us suffer with that anyway – cerebral palsy has always taken a bit of a toll on my poor spine even before all the Squidge-lifting. I so far can make just two reliable recommendations aside from the standard advice of physio and pain meds. 

Tangent (fair warning, I like to go off on these pretty regularly): I only take over-the-counter meds for my aches and pains, (and by rights should have shares in Deep Freeze gel, see below) but I’d love to hear what meds and routines keep you on top of the pains, so please let me know.

My recommendations:

Disclaimer: These are all things I find helpful in managing my own personal level of cerebral palsy symptoms. They may not be the best course of action for you, so please proceed at your own risk. 

  • Deep Freeze/Heat gel

I have found these (available at all leading pharmacies and supermarkets) to be the best non-medical option for pain management. I regularly have pretty sizeable muscle knots in my back, neck & shoulders, especially if I’ve slept awkwardly. Just slather on as required! I prefer the Freeze gel, as it numbs the painful area a bit because it’s cool. Also the only option if you’re pregnant and there are plenty of extra aches and pains when you’re dealing with a bump as well as CP!

  • Massage

Again, for the aches and pains – and inevitable knots. Our bodies work incredibly hard to get us through each day, so go on, you deserve it!

If you’re not yet lucky enough to have your own Kev on hand to massage you on demand of an evening, then it’s definitely worth paying to have them done professionally as often as you can just for the sheer relief of it.

The first time Kev ever gave me a massage, he was convinced he’d snapped a bone in his hand he’d had to put so much pressure on all the knots I hadn’t even realised I was made of. He’s made it his life’s mission to not let my CP beat his healing hands however. He’s also very inventive in his caretaking – he once spent an hour pressing a golf ball into my knots. It really did get rid of them but my God, it hurt. That is not one I recommend!

I do however, own a Homedics massager, which currently is attached to the nursing chair where I feed Squidge at night. It is wonderful because it just gets on with it as I sit there feeding or watching Corrie. It even has a heat function. One of Kev’s best ever present ideas. I wish I had one at work too.

You can buy one here.

These can’t be used when you’re pregnant though and it was a tough 8 months! So please be kind to yourselves – lots of warm (not hot – another pregnancy no-no!) baths and plenty of massages! That’s what expectant dads are for!