I am too important

I fell over in the supermarket last week. It was not my fault. This I know – displays should not obstruct aisles to the point of injury.

And yet, as I sat on the floor recovering, flanked by 2 lovely strangers who stayed to check I could get up safely, familiar feelings crept in.

Embarrassment. Vulnerability. Shame.

The dull ache of whiplash and resultant stiff muscles ruled my weekend. I cried all weekend, so overwhelmed by misery.

I hate to feel useless. But I feel it more and more. My confidence, ever fragile, is destroyed by every fall. I am going out less and less. I can feel the independence I wrangled for creeping away from me, each of us withdrawing into ourselves. We’re separate again now, you see.

That’s not OK. I grieve every day. I was never allowed to recognise that process when I was younger. I was supposed to be grateful that I had legs that worked and that wasn’t worse. I have been haunted by “it could have been worse”.

I don’t try and deny that grief anymore. I think that by accepting it and letting myself say with the finesse of a child that it is unfair, I am saying it cannot overwhelm me.

Sometimes it still does, this weekend being a prime example. So overrun with emotions – shame and hatred among them – I was desperate to lash out at the body that fails me and punishes me in doing so. Rationally I knew it would achieve nothing, but I was so overrun with hatred for the body I can never turn away from or escape.

It gets so very lonely, being on the fringe of so many parts of society. I can be disabled… but I can walk; I can be a mum… but I walk funny. I’ve never been able to fit anyone’s view. And it has broken me. All I have ever wanted to do is fit.

But I will not. Denying my reality is causing me so much pain. I already have so much pain. I do not apologise when I say I cannot live like this anymore.

I cannot live with I can’t. All that makes me feel is that I can’t be society’s perception of what I ought to be. But I am learning that other people cannot validate what they haven’t come to understand.

I don’t want to waste away here, resenting the safe haven of my home. That is not enough for me. But I do need to feel safe. And so I have finally decided to invest in a walking aid. The thought even as I write that makes me shudder with the embarrassment teenage me felt so acutely when I rejected the option.

But it cannot serve my pride in this way any longer. If I stop living, Squidge misses out too and even if I have to accept a decline so young, I will never accept its effects on my darling girl.

So I’m going to safeguard my independence however I can and teach Squidge that all expressions of emotion are OK, are healthy if they are being processed.

I fully expect that one day she may not want to be seen with her mum and a walker and that’s OK. I have to deal with the disability whatever, so there will be nothing I can’t deal with in her honesty.

But for now, I choose to let this decision empower me. After all, if it helps me carry on, then that’s all that matters. A wonderful friend said to me today “It is not for all the time. Often, it is just a visual reference to inform others you need more time.” Disability is not the either/or scenario I have always imagined. We can work with it. I hope. It feels positive to feel even that.

I am making a choice. I am important. I will shout for what I need. I will teach my girl to shout too. We will muddle through. As Squidge would say (to)”getha”

30 things I have learnt in 30 years of being me

Yesterday I turned 30 years old. I am officially a grown up. I have been always been afraid to age physically but this has harmed me emotionally too.

Last year, in a shopping mall cafe, I sat and wrote out a list of berations. I wrote myself out to be a hateful failure. For all my blessings, I was miserable, trapped in this body and more so, my head.

This year, entering a fresh new decade of living, I am proud to report that with the much needed help of the Mental Health Team I have very much separated that negative voice and now I recognise how and when it tries to sneak in and beat me back down. I have made a conscious choice not to let it win.

These are the 30 lessons I have been so lucky to learn in the last year:

  1. I am a dedicated mum

  2. I am determined

  3. I want the best for myself

  4. I am stubborn

  5. I cannot read minds

  6. The Little Monster cannot be defeated, only managed

  7. My body is not my own just yet but we can learn to muddle along together

  8. Every facet of my identity is my own. They do not need explaining to anyone but me.

  9. The truth can be a friend. I will not spare people’s feelings anymore

  10. I needn’t be embarrassed by my disability on account of people’s lack of understanding

  11. To ask for help is empowering and positive

  12. Decisions taken as a result of my limitations must always be in my best interest

  13. Self care is vital – and allowed

  14. It is OK not to be OK

15. It is vital to be able to say I’m not OK. I have a wonderful husband who wants to listen.

16. I do not need to hide this disability away because I am “lucky enough to walk”. It is mine to own.

17. Not everything is my responsibility. Disability is something society should be accepting of outright. I shall tell it as it is and it should be and no more. My energy is too precious to waste.

18. When I ache, it’s time to stop and be kind.

19. Sleep is precious. Fuck it, napping is empowering.

20. I have brilliant friends who fully support my tendency to drop in and out of their lives, energy dependent. I wish it was different but thank you for loving me regardless.

21. Pain does not have to be endured. Painkillers are acceptable and often necessary

22. I do not need to wage war with a body that struggles anymore. This is a body that has done amazing things for me and made me forever part of the best little person I know.

23. Comparison really is the thief of joy. People are living their own lives to the best of their capabilities.

24. It is no-one’s fault my capabilities have their limits. Least of all mine.

25. I hate to say it but my mum was right…. comfortable shoes and a bag worn on two shoulders is the way forward. Sorry I doubted you Mum!

26. I know this body best. There is very little point in being bamboozled by the medical terms and still not getting the help I need. No more struggling on, I will continue placing the right people and treatment around me.

27. There is pride and achievement to be found in the smallest things. Put my own hair up? Great. Put 3 loads of washing away? Awesome.

28. I will not feel ashamed for repeatedly hitting rock bottom. It is my right to cry and say this life is too hard. Because it is. But I will always fight on for my little family.

29. I will not lie. I will explain each struggle to my beautiful girl so that she understands why Mummy must cry sometimes. She will not be afraid of tears. She will know they are healing sometimes and that Mummy fights on.

30. I will always remember my place in my little family with a girl who loves me and a husband who supports and cares for me in ways I have never afforded myself so that I can enjoy our life together. I will not forget how lucky I am to belong to you both.

Here’s to a very successful 30s!

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.

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!

2019 – The Year of Self Care

So we’ve ambled into yet another new year. I won’t insult you with the salutation “Happy New Year” because honestly, I know for a lot of people, it isn’t. We put so much damn pressure on ourselves to make changes, do better, and is it really worth the emotional burden?

This year, I have decided not.

I have made resolutions, don’t get me wrong. With a view to being able to work less (because I ache, so much, so often) I want to make it a habit to save as much as I can, to make smart choices and not be wasteful. But that sentiment doesn’t just apply to money. It’s so absolutely true of energy too. Energy it turns out, is the most precious (read: lacking) of all my resources and I have wasted so much of it (even in years where I was so much less hindered by my physical state) wrangling with myself, being so angry at my failures or inabilities.

But it’s such a waste. To be so constantly exhausted makes me angry. To be so angry and embittered exhausts me. And round it goes. And I have to make the choice to break the cycle.

I have battled with negative self thought all my life. Mostly, I don’t like to be me. And it’s OK to say that. This existence is a battle and I don’t have to be ashamed of that because I’m still here, I haven’t given up. I’m too damn stubborn to give up, even when it feels like I should, just for the rest.

I don’t pretend I can just flick a switch, or that the nasty little voice in my ear will just be gone. It will take work. But I have chosen to accept that negative thoughts will happen, as they do to us all. I just need to be able to balance them with positive ones too. I think I need to hear myself say that I am doing well, to give myself chance to believe it.

And so far this year, I am doing OK. I have arranged play dates, I have spoken with friends and family. I’ve sat and made practical decisions like a portable screen riser so my poor neck doesn’t have to ache quite as much when I’m out of the house writing essays.

I even paid for a lovely hairdresser to come and show me how to do a ponytail. And what’s so daft is that I was so embarrassed to do it. I’m nearly 30, with awkward hands that just don’t know how to do the simplest things with my own hair. But maybe that’s not the fault of the hands. No-one ever showed me, because…. I don’t know, it was too hard? And how can I hope to know what I have never been shown? So I have taken that step. The lovely lady was probably 10 years younger than me, but she didn’t judge me for a second. I did, getting frustrated with myself when my hands wouldn’t follow her simple instructions.

But she saw that in me and was so kind, arranged to come back and show me the next step in short bursts. And I’m fortunate that messy ponytails are in, because that’s what we’ve got. I finally managed some semblance of a ponytail, all by myself, and mixed in with the embarrassment was a tinge of pride I am determined to hold on to. I’m going to push myself and I’m going to learn 1 way, 2 ways, maybe even 3 ways to do my own hair, so that I might look a tiny bit different for the first time in forever, to make me feel good. Why on earth shouldn’t I ask for help in doing that, if it will make me happy?

This will be the year of investing in me, of giving myself a good talking to. So it won’t just be “You didn’t bother to do x, y or z today Jo”, it will be countered with “Yes, but today, I needed to rest/do nothing”. It’s OK to take care. No-one else will do it for me.

And that’s OK too. I like to feel in control, of feeling like I know how to get the best out of this year.

I really hope you do too. I have no doubt that you deserve it.

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!