Please, Ask Me What It’s Like to Be Me

This is written from a place of emotion. CBT tells me that I shouldn’t always listen to my emotional voice. It’s loud and often angry. Mental equilibrium is achieved by letting the rational voice in, to quieten the emotional voice and calm the mind.

But, what I have realised is, my mind cannot be calmed if it cannot believe it is in charge of my body. It doesn’t. I don’t. So, this comes from a place of struggling, of raw pain. Of wishing there could be just a little more understanding.

I offered some insight into my life to a hard-at-work author today, who wants to portray someone, like me, with mild CP in his book. I haven’t seen many such characters (though maybe that’s on me to widen my reading, I get that). But talking to him, telling him my truth was strangely cathartic. I was glad I did it.

See, a lot of my historic experiences have shown me that society believes (and the media often expects) that one disabled person can speak for us all. For me, that figurehead seems to be Tanni Grey Thompson. A very accomplished woman. I will not insult either of us by calling her inspiring. To me, she is just a woman living her life as best she can. After all, that’s all any of us can be right? But to the media, she is the person to (literally!) roll out to explain any disabled related issue to the rest of us. I got sick of the sight of her on TV to be honest and the poor woman has done nothing wrong. But the point is, she does not speak for me, even on the occassions when our opinions align. For starters, we have very different conditions. Tanni has spina bifida. I do not. She uses a wheelchair. I do not. Not all the same see?

I cannot speak to the life experiences of every disabled person, or even every person with the exact same condition as me (spastic diplegia cerebral palsy, in case you wondered). Cerebral palsy has many types, on many spectrums and effects each life differently.

I spent my teenage years, my physically better years pretending it wasn’t there. I’d cry everytime I caught sight of my scissor pattern staggering in shop windows, because that wasn’t the person I was in my mind’s eye. To me, so long as I cou;dn’t see it, I was the same as everybody else.

Except, now, I know this is the wrong approach. The physical toll has worsened. I live in a body worn to an age about 20 years above my documented age. Now, I live in fear of aging. I will not die any sooner as a result of my condition. But at 60 years old, I will likely feel as most people do physically towards the end of their lives. I will be facing, statistically, another 15-20 years, a gift I’m sure. Except, what does 20 years past the end of life feel like? No-one can know can they? I am terrified.

And that’s not what people want to hear. People want to tell me I’m strong and brave and quite frankly, I’m sick of it. Those are token words, they are not what I feel, not by a long shot. I’m not living this life because I’m strong or brave, or (shudder!) an inspiration. I am living this life because I have a family and dreams to live for. Because to not live this life takes away the pride I feel at belonging to them all. I live this life simply because there are people too important to not be here to love and enjoy.

I suppose the argument I have with myself, rightly or wrongly, is that people hide in these platitudes because they cannot know what it is like to be me. I get that. But please, please don’t be afraid to ask. If I’m having a good day, I’ll say it is what it is, that my husband, my daughter are all the reason I need to be OK with being me. If I’m having a bad day, I will probably cry. I will tell you I’m sick of being constantly sore and I’m too tired to do this anymore.

I realise how awkward it might make you feel. No-one really knows how to fix another do they? And I know I cannot be fixed. I long for it and I will not apologise for it. But I know in my heart that it is not a realistic expectation and am moving to take positive steps in self-acceptance, because I feel this is something I really need in my life when the prospect of living a long life has the power to frighten me so much. I have a lot to live for, but that doesn’t make the act of living any less hard.

So, if I’m in tears, if I can’t do this anymore, please don’t shy away. These limitations can be incredibly lonely. I don’t expect the world to fix me. I just need someone to ask, to wear an empathetic/sympathetic face. You don’t need to tell me I do “so well”. I need you to recognise that this is hard, to tell me that the constant struggles are rubbish and unfair. Everyone understands how hard life can be? How unfair?

Please don’t be afraid to ask. To hear. I will always fight on another day. I have things to fight for.

But sometimes, I just need someone to join me in a beaten heap on the floor, someone to help me get ready for the fight again.

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 up to the reality of stress

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

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

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

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

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

We all have stress in our lives.

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

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

And here’s my first one:

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

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

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

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

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

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

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

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

Enjoying her soup before Wednesday’s playdate

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

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

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

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

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

See? Wins all round!

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

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

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

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

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.

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!