Priorities vol. 2

Whenever I have been faced with needing to make changes, to practice acceptance of my changing capabilities, my wonderful, loyal, supportive husband has only ever asked one thing of me. “I’ll support you in whatever” he says. “You are living your life, you know best. But please, don’t make any decisions based on your emotions.”

Yesterday, after a very long day at work (all-day conference in the city), I fell over in the dark street having just got off my bus. I got up slowly from the ground and felt a familiar pain coarsing through my arm. I’m still not over my most recent bout of whiplash, so it feels like the aches, the pain and the limtations have been lingering for weeks. I called Kev, and asked him to come get me, as I was just at the end of the street. He raced down and as I saw him coming, I burst into tears. Because I knew I could now, that someone was here to understand.

We walked to the next corner and I lost my balance coming off the deep kerb. I screamed. Not because of pain. Kev caught me, I was fine. I screamed like a wounded animal. Because I feel more and more that I cannot be safe, that I am not allowed, I am not able to carry on with the threads of life I am trying (too) hard to hold onto. I fell over yesterday exactly at a point where I was allowing myself the thought “I am doing well. All these treatments are allowing me to keep up.”

I screamed because it felt like my body had heard the thought and just decided “Let’s remind her how wrong she is.”

Kev was worried that neighbours would come into the streets, wondering about the woman screaming in such pain. He tried to shush me. I stood in the road, clinging to him for my balance and sobbing. Sobbing about how unfair it is, how useless my body feels and how much I don’t want to live like this anymore.

I know the way I have to live cannot change. I grieve for that fact every day and I do not apologise for it. But sometimes, I am just too tired. Tiredness is the precise reason I was able to fall in the first place. I’m not sure it used to be and it makes me so sad.

The sound was awful. I knew it was me and yet to hear it, to have it be so desperate to escape from my chest and throat, it was like I was listening to somebody else. All I could see through the tears was the blur of the street lamps, and all I could hear was this awful sound. That poor woman, I thought, she sounds in so much pain.

Because it always changes. Part of my experience with disability and depression has always been, rightly or wrongly, that if I am depressed, I cannot be caught off guard when the depressing times or events come. It cannot impact me, they were expected. I don’t mind admitting it’s a horrible way to live. But that’s always been my rationale.

This weekend, I had what I call a peaceful moment. A realisation of true peace, calm and contentment. They are very rare to me. In fact, I cannot remember any outside of the 4 years Kev and I have been married. I’m sure this is not a true representation, but it does show what an amazing impact my husband has had on me as a person.

The first one was the day after our wedding. We’d booked a nice spa hotel for a mini-moon, to let us adjust to married life. Spas are ridiculously important to my physical maintainence and I remember just climbing into the warm jacuzzi. The sun was setting, sending beautiful red streaks across the sky as we looked out onto the Welsh hills. We held hands, our new wedding rings shining on our clasped fingers. There was nothing to do, no-one else to worry about. All we had to do was be.

The second was a weekend away around the first anniversary of my dad’s death, when work had been hectic and my grief heavy. It was to the city of St. David’s, which is in fact this beautiful little village. It was pouring down with rain pretty much the entire time. So all we did was walk between the hotel, the little chocolate shop and the pub with a roaring fire. It was as if the world couldn’t touch me there.

The third was the perfect day we had in Cuba, swimming with dolphins and eating lobster, drinking rum on a catarman as the sun set. An experience in a beautiful part of the world I could never have imagined I would get to see were it not for the husband so determined I deserved to see it.

The fourth was our first family holiday, where nothing mattered other than our little girl’s happiness.

The fifth was just this weekend. We went for a nice autumnal walk in one of our local parks, me wanting to crunch leaves underfoot, Squidge wanting to play in the park. There was no rushing, no clock watching. We went for hot chocolate at the café and I looked at them both, my husband and daughter, and I was so peaceful, so content. Right in those moments, I had everything I need in the world.

And I think that’s why it hurt me to hear myself so distressed over a fall. Because I know it was because I was tired, a reult of wanting to work too hard. It is not my fault. It is not what matters most. Yet still, I get so absorbed in what people must think of me, all these shortcomings that make me so pitiful and abnormal. Except, I am slowly realising, those are not the opinions of others. It is me, projecting my own. And I don’t want to waste my precious energy on being so angry with myself. What use can it possibly be when I had that moment in the park, that wonderful moment of knowing I have everything I need?

My family is everything. They are what ground me and who make me feel whole. I refuse to care any longer about whether I am working hard enough, or how much longer I can work to put coffers in the pot. A job is not what I want. My family is. I would like nothing more than another baby and I am determined not to wear myself down working. I know too that Kev would adore another child. So much so, that he refuses to wrangle with himself as I do over the finances. “If it’s something we want” he says (he knows it is) “then we will manage.” I have spent a lot of time and energy arguing with him, but what for? To see if I can make him as worried as I have been? It’s useless. The two of us are too determined in our aim. And what a beautiful aim it is.

The idea of managing has always stuck in my throat, like it cannot be enough. But I don’t care anymore. Somewhere safe and warm to sleep, with food in our bellies and love for each other. That’s all we need and we have all of that. I don’t want to struggle anymore. I want walks in the park, at my own pace, not having to think about what the rest of the world needs from me. Because what I have to give is not for the rest of the world, it is for my family. It is for that poor broken woman whose screaming is still ringing in my ears.

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.

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.