Priorities

Earlier this month, we took Squidgelet away for a week, our first family holiday, to a caravan park in Newquay. It was one of the best weeks of my life. We were determined not to be constrained by time or routine. We were going to do whatever we wanted, whenever we wanted. It was bliss. Squidge loved having her own room in the caravan. The light switch was right next to her bed and she was determined that it would always be day time, so she could go and play. We told her to knock on our door each morning and we’d talk about what she wanted to do that day.

The first morning, she knocked on the door: “Mummy! Daddy! I want tea!” As we looked up from under the duvet, she was holding her swim nappies in her hands, having swiped them from her suitcase. “We go swimming.”

We all laughed, it was so nice letting Squidge take the lead, having all the fun she wanted to. She has become very matter of fact and straight talking, which I just love.

We spent our days at the beach or park, riding trains, going to the on-site soft play or pool, always going to bed via the penny falls. Squidge even dunked the 1000 point skeeball where Kev and I failed.

She’d go to sleep and we’d sit on the outside steps listening to the sounds of people glad to be on holiday, talking about how happy we’d made our precious girl that day.

Coming back was hard because I had my PIP Assessment to dread. I’m not going to elaborate yet because this stressful journey is not over for me or millions of others. Suffice to say, I despise that I am made to fight so hard just to live.

Emotionally it’s a terrible position to be put in. As ever though, Kev was my saviour. We went straight out, back to the hotel we had our wedding reception in 4 years ago.

This was how we celebrated our wedding anniversary whilst we were away:

But we’d always said we’d go back to the hotel each anniversary, to our favourite corner of the bar. Our spot.

He let me soothe myself with cocktails with daft names then I went off for a massage I so needed. Then off to the lovely Italian restaurant we ate in the night before our wedding. Two bottles of rose down and I’m laughing, my head hurts less from always being so busy.

I honestly thought I might cry after the assessment, through relief or pent up anger. I was truly surprised when I didn’t. Instead, I was taken aback when I suffered tension headaches and dizziness for the rest of the week. I honestly think it was all the stress begging to be released.

I didn’t enjoy returning to work either. I know no-one does after a holiday but oh, I just wanted to be with my girl, to lose the concept of time and stress, to enjoy.

So whilst financially it may not be time, I think I have shown myself I am done with working. In comparison to my family and feelings of peace, my ability to financially contribute means so little. I really don’t care to sustain it at the cost of my own health and happiness, when once I was sure I had to.

But my priority now is this wonderful family. It’s a relief to know that for once, all of me is in agreement. Life is for living after all.

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.

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!

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.