If it works for dead saints, why not for me?

I can remember the years when my pillow really did smile at me. My bedroom was a cool, calm and comfy place. Going to bed meant climbing in, curling up and dropping off. Of course nights with the children usually meant that I was up and down like a Jack in the Box, but I sank into sleep every time my head hit the pillow.

Insomnia is a rare visitor here, like a wasp on a winter’s day. Even during the worst of the menopausal years I mostly slept, but not the recommended eight hours of sleep. It’s partly my own fault. After I left home, there was so much to do and see, so many people to meet, so much to experience and enjoy, that sleep just seemed like a waste of precious time. At College I would be up at 8am studying or swimming, in lectures at 9, manning the Rag Office at lunchtime, working in a bar in the evening, then on to a club followed by curry and home to bed at 4. Then I’d get up at 8 and do it all again…

I *may* have slowed down a bit as I’ve got older. But my children’s night time needs resulted in constant interruptions over the past 25 years anyway. Things were improving though, until this year. The crisis affecting my youngest has had some unpleasant consequences for me (as well as for him obviously, but I don’t write about him on here) and today is the anniversary of when it all began to go wrong. At first I thought the problem would be solved in a few weeks, then by the New Year, but a disastrous Christmas sent everything spiralling downwards, and I now feel trapped and traumatised in a very difficult situation with no good options, and nothing seems to be working.

I’ve been finding it hard to talk, to eat, to function, and also to sleep. The novelty of sleeping in the kitchen has long since worn off, though moving out of my lovely bedroom to sleep downstairs has worked out well for my disabled daughter. As for me, I now know every peculiar sound that fridges make in the middle of the night! And I’m also too accessible, as my sleeping corner is on the way to the shower room. This now means regular night time disturbances.

With these on top of all the other stressors, I ended up with night terrors so bad I would often lie awake from 2am, barely fit to cope the next day. Finally I went to my GP for help in August, and reluctantly went back on meds. A sticking plaster over a wound the system seems powerless to heal.

Something, possibly the bed, also led to trapped nerves in my neck and shoulder. As part of the solution I was told to stop curling up, and to sleep unprotected on my back. Ugh. I feel like a dead saint in a tomb. But if it works for them, I guess I’ll have to make it work for me.

And yes the meds plus the Calm app mean I am now sleeping a little bit better. But this can’t go on. Something has to change. After all, I’m not a saint, and I’m not dead either.

 

 

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When visitors make magic happen

The magic starts with me: I am almost transformed into a domestic goddess at the prospect of visitors. Suddenly I can find the energy and incentive to clean the house from top to bottom.

My children rise to the occasion. They smile, they put their problems aside as much as they can. They enjoy the company. They make an effort, even when it’s hard.

There have been a few brave visitors this year, all of them have a made a huge difference, and made memories for us as a family.

Last weekend it was my brother’s turn, and for a couple of days life seemed almost normal.

Broken things were fixed. Lunch was eaten out. With dessert of course.

Banoffi Pie

There was a trip to IKEA that involved more than just eating meat balls!

IKEA

There were family dinners, I even made a hearty vegan salad one evening and there may have been a tear in my eye at the sight of the empty plates…

On Sunday we went to Farmleigh in Dublin’s Phoenix Park for Nepal Day. We were a bit too early for the celebrations, but B enjoyed showing the sights to her uncle.

Sadly the magic ended at 6.15 on Monday morning, but it was good while it lasted.

R2BC at Mummy from the Heart 

Reasons to be Cheerful 7.9.18

Once again I’ve been struggling to write anything positive. It feels false to suggest things are mostly fine here. When they’re really not. I don’t like presenting a misleading image to the world, that I’m a great mum who copes cheerfully with all the challenges faced by my daughter and son, when the truth is a little different, especially in relation to my youngest, who is still going through a very difficult patch.

But if I give up writing these posts, I may stop getting cheery reminders about them from Michelle and Becky. Even their weekly tweets force me to take stock and remember any good things that have happened.

So here’s a selection from the last while:

I’m still losing weight.

I finally downloaded the Calm App, and it’s helping me to go back to sleep when I’m worrying in the dark hours of the night.

The end of the summer means the professionals are back at their desks, and a trip to Accident and Emergency has galvanized the system to take action in relation to the needs of my two younger children. Hopefully we will see real results soon.

B now has a Personal Assistant for 8 hours a month on Sunday mornings. It’s a busy time for me, and now she can go out with her PA instead of watching videos.

Meeting a former neighbour by pure chance.  I hadn’t seen her for at least ten years and it was good to catch up.

R2BC at Mummy from the Heart 

Calm

The weekend stretches ahead, my two girls are up, my youngest is still asleep and all is calm.

No parkrun today – the buggy is damaged. No plans at all. B and I both wake at 6.30. Habits are hard to break. I enjoy a leisurely half hour with coffee and twitter. She stretches and sings along to the songs on the telly.

I check the weather, pick the clothes, and give thanks for the overnight rain glistening damply on the roof.

I get both of us showered and dressed.

Breakfast is made and I push B’s chair to the table. With tweetdeck and the telly for company we eat companionably together. One spoonful for her, one for me. She does most of the work, and just needs a tiny bit of support to get the spoon from bowl to mouth. It’s great to give her that control, but sometimes she makes a mistake. This morning she silently choked for a split second. No panic here when that happens. I know she can cough it out herself (perhaps with a little pat on the back). Three minutes later and she’s reaching for the spoon again.

Concentrating hard. It’s not easy to use a spoon when your hands are tiny and your arms are short and so so heavy…

Then a snippet of Britney singing floats across the room from the telly and B raises her head instantly. But it’s only an ad.

Back to the bowl again.

Finally it’s all gone. A quick drink – straw required – and a wipe round with her pink flannel and we’re done.

Time for a bit more music telly, and head dancing while I chat and catch up with eldest before she goes to the gym.

It’s been a tough week. I’m giving myself permission for a bit of downtime with extra coffee and my laptop.

But then I see what’s happening in the city today.

B might like that, I think.

And I’m back in logistics mode. Could we make it? Would she like it?

I’ll let you know later …

 

 

Real life is better

I still enjoy blogging, and I still enjoy social media, but both have changed hugely, and so has my life, and that means more online changes around here.

Probably less blogging. I have plenty of posts in draft, but I may never finish them, and I don’t want to put myself under that pressure either.

There will be more updates on the Facebook page, which you can find here if you’re not already following it:

https://www.facebook.com/oftencalledcathy/

I don’t like the recent changes to Facebook, especially the removal of the option to have friend lists, but it’s where most of my real life friends are, so it’s where I need to be. And I’m Facebook friends with almost all my online friends too.

I’ve mentioned before that Instagram was my new favourite place for a while until they changed the feed. Now I’m losing interest, so little of the activity feels genuine, except from my real friends. Who are on Facebook too!

Pinterest is my scrapbook and I ignore What’s App, Snapchat, Google Plus and the rest of them.

That just leaves Twitter: it’s chronological, and I can still use friend lists, but today the option to use hands free streaming (no scrolling required) on third party apps was removed, so I can no longer have it on in the background while I do other things. I had been chatting on Twitter more than anywhere else, and I loved catching all the breaking news. But that’s all ending as of now it seems.

Back to Facebook then. And that other old fashioned option – real life. I’m trying to reach out to my friends and meet them more often in real life. Because my love affair with social media has soured.

Real really is better. I get that now.

 

 

The Cliff Edge

How did I ever find the time to write? I really don’t know any more, and I don’t know what is to become of this blog. The more things I cut out of my life, the more stuff is thrown my way. And that’s mixed with all the challenges that are not going away any time soon either. Sleep deprivation has recently been added to the mix, and I *may* have vented on social media as a safe way to handle the relentless pressure. But so far, every time I think this family is going to fall off the cliff edge, I have a good day, or even just a good few minutes. And that keeps me going for a little bit longer.

So what has cheered me up recently?

I’ve reduced my exercise schedule to four times a week, and one of those sessions is usually assisted running. Which means pushing B in her wheelchair. Many of you will know that we took part in the Alanna Russell Memorial 6K race on the  Sunday before last, and we both had a wonderful time at this superbly organised event in memory of a very special young girl who died last year.

Promises have been made and some action has been taken – B now has a Personal Assistant for 8 hours a month to bring her out on Sunday mornings. That’s a busy time for me, and now she will have something more entertaining to do than watching videos!

A home visit to test out a domestic lift and see how it works, and I can report that B had to ride up and down in it on her own, which only worried her at first. It’s a neat and unobtrusive solution that stores the lift in whichever room you are not using at the time. It can also be used to transport all sort of heavy stuff between floors, not just people in wheelchairs! It does mean that a two storey home really could work for us, though obviously not as well as a bungalow.

A lovely walk in the sunshine with a very good friend and the chance to test out the fare at the Gourmet Food company near Portmarnock.

Malahide Beach summer 2018

A Rainbow Junior Arch Club trip to Imaginosity, an interactive children’s museum in South Dublin, including a van disco on the way, with loads of dancing in the back! It wasn’t really suitable for B, but I was on duty for the Club and she enjoyed being my helper and watching all the children having a great time.

Imaginosity B collage

Hearing my daughter laughing with delight as she is wheeled up the path and home after another great day with her friends at the Central Remedial Clinic..

More reasons to be cheerful over at Lakes Single Mum.

 

Being productive, being brave, and being cheerful

The house has been calmer this week, and that overwhelmed feeling is beginning to recede. I’m finally crossing items off the to do list, and even little things like finding the time to clean the cooker hood feels like progress.

I also began clearing the attic, as a small step towards my plan to downsize from this house. It was not a pleasant or easy job – lugging very dirty and dusty boxes through the attic hatch, down the step ladder and the stairs, and out to the shed – but it was satisfying. I was super cautious, and wore googles and a dust mask, so it’s just as well that no-one rang the doorbell! Then hidden among the boxes I found this…

Bridal headpiece hairband
Memories of a very significant and happy day! Even though it all went wrong later.

I said no to a few more requests this week, helping my productivity and reducing the guilt of not being available at home.

When I heard a radio ad for the 100th edition of Now That’s What I Call Music, I realised it would make a perfect unbirthday present for B. I could’ve added it to her gift list for October, but I wanted to get her a few treats. Just because.

We also raided Penneys (Primark in the UK) and B got a couple of T-shirts, and I bought a cute green jacket – the first time in ages I’ve bought something I wanted, but didn’t actually need.

Finally, I watched in amazement last Saturday as my social media filled up with images of blogging friends in swimwear. It was another tribute to Kate Sutton and a way to publicise a Go Fund Me for her sons. Obviously I was NOT going to do anything like that, or so I told myself over breakfast. By teatime I had my most popular Instagram post ever. I think Kate would’ve appreciated that, and it shows how many women were inspired by her positivity and bravery, and her impact will surely live on for many more years, and I think that’s a good enough reason to be cheerful for this week.

Swim wear
R2BC at Mummy from the Heart 

Reasons to be cheerful about friends, family and more

The last few weeks have been an important reminder of the difference it makes when you talk to someone, tell someone, stop bottling everything up. It began during the Great Escape to Kerry, when the floodgates opened after a couple of glasses of wine. Since then I’ve not been able to stop!

And family and friends responded in ways I did not expect at all 😍

Just a few hours ago these lovely flowers were dropped in by a friend I haven’t seen in real life for a long time. I answered the door with my apron and a scowl expecting someone selling something, but Claire was gracious and we agreed that we MUST meet for coffee soon. And a commitment made in a blog post is totally binding, right?

Flowers

My eldest is home for the week, and jumped at the offer of a proper family Sunday dinner with a roast chicken and all the trimmings. The leftovers have kept me in meals all week (note that I’m still a human dustbin, my mother’s influence from living through the War, and maybe reading Stig of the Dump too many times…).

A trip to the cinema with eldest also happened amidst a fair bit of chaos and I can’t tell you how good it felt to get away from it all for a couple of hours.

Helen, a longtime friend from my London days in the 1980s encouraged me to join in with her 30 day plank and squat challenge – just the kind of thing that helps distract me and gives me a sense of achievement when I feel like I’m failing at everything else. You can find out more at Fit Fab Fifty.

Plank, Me, 2018

Finally I have to pay tribute to blogger Kate Sutton (@IAmWitWitWoo) who sadly died after a stroke earlier this week leaving a gaping hole in the blogging community that formed around 2010. Her huge personality lit up my twitter feed and her hilarious and honest accounts of dating in your 40s were always an entertaining read. My heart goes out to her two sons. Yet in the middle of all the sadness, there was an upside – her death brought me back into contact with some of the bloggers and former bloggers that I’d lost touch with over the years, and to hear how well their lives are going is a reason to be cheerful.

Have a great week xx

R2BC at Mummy from the Heart 

And the band played on

The rain changed everything. Two days, two events. On Saturday B and I spent a sunny afternoon at a small community event in East Wall that featured a local band. We watched and danced and laughed.


On Sunday we went into town to go to a heavily advertised country music festival in Smithfield Plaza. But it was raining. After weeks and weeks of blue skies and hot sun, the weather broke, the skies turned grey, and the rain fell steadily all day long.

A bit of rain never stopped us, and we didn’t think it would stop anyone else either.

As we neared Smithfield, I told B to listen to the music, as you could hear it very clearly. Too clearly, I thought.

I was right to wonder, because as we turned into the Plaza, a sea of damp grey cobbles stretched in front of us, with just a handful of diehard and bedraggled music fans awkwardly tapping their toes in the empty space in front of the stage. Their cowboy hats droopy and soggy, their boots piebald with rain. Plus a couple of families huddling under umbrellas. And us. Of course we enjoyed it. Not my usual taste in music, but this was live music and that alone makes it special. And it was free too!

 

Perhaps that was the problem. If you don’t pay, you can stay away, especially if it rains. And stay away they did.

But you know what? It was a privilege to be there. They were professional musicians. They could have been playing to 20,000 people instead of 20. They chatted to the very small audience, joked and played and sang as the rain tipped down.

In a way it was awe inspiring. It can’t have been easy for them. But they just kept on playing anyway.

 

A butterfly with fragile wings

Progress is a beautiful thing, but in this house it’s fragile and easily damaged. Progress means hours when I feel almost normal again, when my anxiety levels go down, and everyone else in the house perks up too. And yes I’m having to write in riddles and hints, but I did promise that this blog would focus mostly on my disabled daughter B and myself – and not on my other children – so I can’t tell you exactly what’s been happening.

But I can tell you about my other reasons to be cheerful…

My weekend away with B, that I wrote about here.

Kerry

Rain. Only a little bit of rain, but I was so glad to see it, as I was beginning to worry if it would ever return! I know that sounds crazy, but extreme weather events have become the norm even in Ireland, and nothing seems certain any more. Not even rain. (Of course some people were complaining.)

Getting out for the whole day to attend a country funeral to provide support to a couple of friends. It was a risk, but everything at home was okay while I was gone. On the same day I agreed that B could go to the circus after hours without coming home from her day activities first. And that went well too.

I bought a different newspaper at the weekend to begin doing crosswords again. All the challenges this week (to counterbalance all the progress) meant that I am still trying to finish the first one. But it’s a start.

B and I joined the first outing of the Rainbow Junior Arch Club’s Summer Programme last Friday and we had a wonderful time exploring the Airfield Estate and Farm in South Dublin. We visited it once before a couple of years ago, and I wrote about that visit here.

Sculpture Airfield Estate

B and I went house hunting again, and with new bungalows as rare as pink butterflies, I decided to look at new two storey houses with large downstairs toilets and room to install a lift. And we found one. Of course the developer is only interested in selling to first time or cash buyers, but I’m not giving up just yet! At least I’m finding options.

But the butterfly of hope is fragile and elusive, and I’m always afraid it will fly away if something changes. This week though I will try to be cheerful and enjoy the way things are right now.

R2BC at Mummy from the Heart