Mummy’s medicine

Pain is a huge part of ageing with cerebral palsy. Whilst its omnipresence is unavoidable, the levels of pain I wake up with every day are unpredictable and draining.

The impact on my emotional wellbeing is getting larger every day.

Yesterday I woke up with very painful tension in my neck and shoulders. Movement was too hard and I was reduced to slumping on the sofa.

Kev climbed in behind me and began to massage the tension. I cried out in pain.

When she was younger and Squidge’s saw that, she pushed Kev away, shouting “No Daddy!”

Yesterday however, Squidge saw and heard my pain and climbed into my lap. She wrapped her arms around my neck. “Ohhh!” she sang empathetically.

But I struggled to hold her as Kev continued apply the necessary pressure to my stubborn muscles.

“Oww!” I whimpered, unable to hold it in.

Squidge pressed her hand tenderly to my face, stroking my cheek as she asked: “You OK Mummy?”

My heart swelled as she worked so gently to distract and soothe me. I didn’t want her to think that her daddy was hurting me so encouraged her to climb into Kev’s lap and feel the tension for herself.

She knew what the solid lump was as soon as Kev helped her feel it with her little hands. “Mummy ow!”

“Yes baby. And Daddy is helping take the ow away for Mummy. It is Mummy’s medicine but Mummy is not very brave, so Mummy say ow.”

“Do you want to help Daddy give Mummy her medicine?”

“Yes.” she said, hands poised in the same position as Kev’s and bless her, she started pushing gently on the lumps.

Kev’s pressure increased, needing to use his elbows. So Squidge climbed down.

“Ow!” I cried out loudly.

But Squidge frowned, telling me sternly: “No Mummy. No ow. Mummy’s medicine not ow.”

We laughed together. Our wonderful girl had listened so well. She knows that medicines exist to make us better. Therefore, we have already taught her it is useless to give into pain.

I like that. Our parenting means thst she already knows that pain is there to be pushed through.

We’re not going to be defeated. Mummy must take her medicine.

I really needed that

This is the walker. Squidge loves it but there are versions of me that despise the fact I need to use it at all.

Today was not a day when that fight needed to matter. I had slept horribly on my shoulder and every movement hurt. Today I needed its help.

I dropped Squidge off at playgroup and was already in tears from the pain. I felt so lost and overwhelmed.

And then, walking through town, an elderly couple approached me, joking about not texting in charge of a vehicle.

The lady asked me outright what I needed it for, curious, not accusatory. It felt strange. But her kindness allowed me to a bit more honest.

“My balance is shot.”

This lovely stranger squeezed my hand and said “Good for you. You’re doing the right thing then.”

I really needed to hear that. For once, there was no judgement, no eyeing me up as a fraud because you can’t see my pain.

I went on to my massage. The therapist was so kind and understanding. She knew of cerebral palsy, was unsurprised when I mentioned my muscle tension, or the need to have a bit longer to get undressed. She even offered to help. And I didn’t allow myself to feel patronised. I felt supported.

She worked tirelessly on my muscles and tension. I felt the pain subside, the muscles loosen. By the time I collected Squidge from playgroup I felt human enough to agree to a play in the park.

After the emotional turmoil of constant pain and stress these last few weeks, it was nothing short of miraculous. I’m allowed to be important too. I think I really needed to be told that today.

“Look Mummy, who’s that?”

Yesterday, I walked with Squidgelet to the end of our street and purchased a walker.

*exhale*

My teenage self is disgusted with me. Scoffs that I have given up.

My 2 year old daughter didn’t bat an eye.

That morning she walked halfway to the library for Rhymetime holding onto the pram. All I had to do was tell her where to hold.

“No let go of pram” she promised me faithfully. There was no question that she would. She understands she needs to listen.

I showed her where to hold the walker. It was exactly the same. I was so proud of her.

I text Kev to say it had been bought. He told me he was proud of me for making such a huge step for my independence even if my pride was hurt and my 14 year old self sulking indefinitely.

“I know it’s a good thing…” I typed, “…but I feel so defeated and defined by it and it breaks my heart.”

It felt unnatural to rely on it, even if I know it’s not for all the time. It felt, rightly or wrongly, like my capabilities came in second after this unsightly lump of metal.

I started to cry, as softly as I could. I couldn’t help it. I was grieving, letting my teenage self let out her disappointment. After all, I never knew this is where I’d be at 30 years old. I don’t know what I could have expected when the medical profession and support services stayed tellingly silent. But I never thought being 30 would look quite like this.

Squidgelet frowned when she saw me wipe my eyes. “Mummy ow?”

“No darling. Mummy not ow. Mummy sad. What would you like to watch? Wiggles?”

She pondered it for a moment. “No Wiggles. Photos.”

All our photos slideshow on our TV.

Looking at me, photo after photo, she asked “Look Mummy, who’s that?”

With her beautiful big heart, Squidgelet distracted me from my tears.

Mummy proud, Squidgelet. Mummy so proud of you.

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!