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.

 

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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 

The Great Escape

It felt like some crazy dream. A road trip across the country with my severely disabled daughter in 30 degrees of heat, on the day the schools broke up.

For a weekend break.

My first break for seven years.

I didn’t believe it would actually happen until I pulled away with the van stuffed with enough emergency items to see B through the Zombie Apocalypse, never mind two days in Co Kerry. Of course I forgot most of my clothes…

When I got the invitation my instinct was to say thank you, but I just can’t manage it. As usual. But I have wonderfully persistent friends. They had a house with a downstairs room where B and I could sleep, as well as the essential downstairs toilet. They didn’t ask can you go, they asked when can you go .. And then my eldest said of course she could manage everything at home for a couple of days.

And so I found myself on Friday afternoon cruising down the motorway, sunglasses perched on my sweaty nose with the music turned up and B dancing in the back.

Almost five hours later we arrived to a wonderful welcome and food on the table. And so it continued – I barely lifted a finger, except to look after myself and my disabled daughter, and obviously that wasn’t always easy in a strange house not designed with wheelchairs in mind. Apart from that it was everything a break should be: great company, good food, beautiful scenery and glorious sunshine. Poor mobile coverage forced a digital detox, but I didn’t really miss it as there was always someone to talk to and something to do.

Killarney looked stunning in both sunshine and clouds, and there were plenty of wheelchair friendly rambles and places to visit. On the Saturday night we went out to dinner at a hotel overlooking the lake, and there was no hassle including a severely disabled young adult at the table. In fact no fuss was made at all, she was treated the same as every other guest. It was very refreshing.

The break reminded me again that with a little help, it IS possible to have a good life with a severely disabled young adult.

Trip To Killarney Collage June 2018

 

Being cheerful about being over 55 (as I reach 56)

This was not an easy post to write😂😂

Life has changed since I wrote my optimistic birthday post of 2017, and I feel and look a lot older than I did back then: Perhaps my age is now showing, or perhaps the stress of the past 7 years – and especially the past 9 months – has finally caught up with me.

I stayed up late on June 19th, to eke out the last few hours of being 55, and my birthday began like any other day, apart from a couple of cards and presents (I have a very small family). But then I opened Facebook, and the birthday greetings began to roll in, and they really do make the day feel special. By teatime I had also acquired two beautiful bouquets of flowers, a thank you cake from a neighbour who just happened to drop it in today, and I’d also enjoyed a late and leisurely pancake breakfast with a friend. So that was good. No plans and no expectations. My birthday, my way.

Birthday Collage 2018

And that’s the main benefit of being over 55, I can give myself permission to do what I want (not forgetting all my caring duties of course!) and say no to people and pressures that I know I don’t need in my life any longer.

I can wear what I want. No-one really cares what I look like now, and my adopted uniform of black on black – with the occasional splash of colour – helps me to feel in control of my wardrobe at least.

And if you live in Dublin, there’s financial benefits too, including the Council’s Passport for Leisure Card*, which means I’m now going to a new gym for the bargain price of €8 a month!

If I think of any other benefits, I’ll definitely let you know. I’m all for having things to look forward to. And on that dubious grammatical note, I will end this birthday reasons to be cheerful. Have a great week xx

More Reasons to be Cheerful over at Lakes Single Mum.

*The Passport for Leisure Card provides discounts on a wide range of activities, not just gym membership

 

 

Reasons to be Cheerful 15.6.18

Another busy fortnight is almost over: fewer appointments and less training, but a lot of catching up to do! I’ve reconnected with my morning running group in the Phoenix Park, returned to my Zumba class, and successfully attended two disability-related Annual General Meetings with my disabled daughter B. Plus a physiotherapy appointment for my trapped nerves, and that’s on top of my caring duties.

Most of the really cheerful stuff took place over the two weekends (including a bank holiday here in Ireland on Monday 4th June).

Inclusive Zumba – last Friday night B and I went to a charity Zumba event. It was wheelchair accessible, loud and fabulous. She mostly watched and laughed, but I managed to include her in some of the routines. We’ll definitely be going to more events like this.

A simple trip to town – sometimes I haven’t the energy to deal with all the unknown challenges that B and I may face if I try to bring her to one of the many events held every weekend during the summer. And sometimes the familiar is just as enjoyable for my daughter, so last Sunday we spent a couple of hours wandering around Dublin City Centre and she had a great time..

Bronwen, Dublin City, 2018

Bloom – the previous weekend we had a wonderful day out at one of Ireland’s largest Festivals. You can read about the fun we had here..

Bloom 2018

Parkrun Volunteering – B and I gave out the tokens at the finish line of our local Parkrun recently. I enjoyed it, but B didn’t seem to think it was as entertaining as actually running around the course!

Mini Marathon – B had lunch with her sister while I pounded the streets of Dublin with 30,000 other women on Bank Holiday Sunday. Sadly my training was not sufficient to cope with the oven-like heat, and my finish time was 57.57 for the 10K course, slower than I’d planned. But I had great company at the start: not just my current running buddy, but also my training partner from the 90s, it was lovely to meet her again and discover that we are both still running. You can see us in this 1994 photo of the start line.

Mini Marathon 1994 Irish Times

For more reasons to be cheerful, head over to Lakes Single Mum, and have a good week xx

 

 

 

 

A Rant about Carers Week #RealCarersWeek

Many people say that becoming a carer has made them a better person: I’m sure that can be true, as I saw it within my own extended family.

But I don’t think it’s made me a better person. Instead it’s highlighted my flaws: my lack of patience and tolerance, my self centredness, my incompetence in the face of overwhelming domestic duties and repetitive paperwork. Sometimes I strive to overcome these failings. At other times I rage against the unfairness of it all. I rage at being forced to live a confined life of fear and anxiety. My skills getting rusty, my brain less sharp, my mental health deteriorating.

Sure, I do my best. I do all that self care stuff: I exercise, as I’m sure you’ve noticed! I do social media – often the only opportunity I have to use my communication skills, and writing a successful blog post – or even just a popular tweet – gives me a boost that I badly need. I practice being grateful, I make myself do things that are challenging. I keep going. But it’s not always enough.

It’s not just me either.

There was a Carers Week competition to win a break at a luxury hotel in rural Ireland. Wonderful, you might say. Well deserved (especially if my friend @autieland wins, and I hope she does because she really deserves it as you can read here) but it also rubbed salt into the wounds of those of us who cannot get away from our caring duties, because those we care for have no respite. And even those families that have respite, may not be able to get it when they want or need it.

You see it’s different for everyone: some carers manage to lead relatively normal lives – and I used to be one of them – holding down jobs, perhaps enjoying holidays, a busy social life. Even then they may be facing challenges they don’t talk about. But many of the family carers I know live lives so difficult that the rest of us sometimes wonder how they keep going at all (no choice is often the answer to that question), perhaps due to the number of disabled dependents they care for or the severity of their difficulties; perhaps due to totally inadequate housing, no support, poor health, chronic pain, being housebound for months or years at a time, lack of money, lack of interest, feeling ignored, unappreciated and left behind by the rest of the world. It’s a recipe for despair.

The manicures and other little treats being offered to carers are thoughtful attempts to mark Carers Week, and undoubtedly appreciated by many. But those carers stuck deep in the trenches may not be able to leave their duties to enjoy a little pampering, or they may feel under so much pressure that doing something for themselves becomes just another item on the ‘to do’ list. And a set of pretty painted nails would not last long with the amount of hand washing that many of us have to do each day for hygiene reasons. It’s just not worth it.

There are no easy answers: my disabled daughter has been given a ticket to see Taylor Swift on Saturday, with support and some friends. A great break for me, you might think. Not quite. You see I won’t really be able to relax, as I will be dropping and collecting her, I need to be on standby in case she wants to come home early, and when I do bring her home there is a long bedtime routine that includes hoisting her onto the toilet and her night time stretching exercises that help her to sleep. We are both going to be exhausted! But we’re going to give it a try anyway. Oh and I forgot to mention I will still have one person to care for while she’s out….

What can I do except keep trying to raise awareness? This week I’m joining @Carer49 and tweeting using the hashtag #RealCarersWeek to highlight issues and possible solutions. I hope someone will read them, someone who can take action to improve our lives and the lives of our dependents. It’s hard to hope though, when UK Councils chose Carer’s Week to announce further cuts to vital care services. Does anyone else think that old, sick and disabled people and their carers are actually held in contempt by many people in today’s world? Yes? Not just me then.

As you can see, becoming a carer has not made me a better person, but I feel better after that little rant, and I promise my normal cheerful service will be resumed soon..

The day we walked to Bloom to test out a toilet

The Sanctuary Nurture Garden
The Sanctuary Nurture Garden

It was a sunny bank holiday Monday, we were planning to go to Ireland’s biggest flower, family and food festival, and I hate traffic jams. But we had to go, because I’ve been publicly campaigning for Bloom – as it’s called – to hire a Mobiloo, a mobile changing places toilet for children and adults like my disabled daughter B.

The solution? We walked. Obviously not all the way, but I left my van outside the Park where Bloom is held, and walked the last 1.2 km to the entrance, passing many cars on the way 😀.

After we’d paid in, we were handed a leaflet for Mobiloo, surely a good sign?

But we hadn’t traipsed all this way JUST to use a loo, so we had a look around first.

B associates outings with food, so we headed straight for the Food Village, and she really impressed me as she tried jam on bread, ham and wild Irish tuna. (She even helped me to finish a fancy hot dog at lunchtime.)

Then we both danced to strains of the Kings of Leon, sheltering from the sun under the Food Matters awning while drinking Innocent smoothies.

She loved the buzz in the Food Village, and I swear she was absorbing chocolate and sugar through her pores.

The Muffin Man

By contrast the atmosphere in the display gardens was almost reverential, and since B couldn’t see much apart from other people’s backs, the only one that interested her was the Mamma Mia Garden, because there was music and activity, of course!

Mamma Mia Garden

We also had to stop by the entertainment stage, and caught some fabulous performances by young stars from the Leah Moran Stage School, sustained by coffee and carrot cake from The Coffee Shack , which did not disappoint – as usual.

Leah Moran Stage School

Finally it was toilet time, and we searched for the Mobiloo: and it was such a welcome sight when we found it. Michael and Graham from the Mobiloo Ireland team were so friendly, and the facility is small, neat and totally amazing: a toilet with a changing bed and a ceiling hoist – the vital toileting facilities that are not provided by a standard disabled toilet (just bring your own sling): It’s very simple, but its availability will transform lives, and I look forward to seeing it at other events soon.

Mobiloo at Bloom

Note: I hope this doesn’t read like a review, I wasn’t asked or paid to write it, and I paid to get into Bloom. I wrote it because I believe in the importance of spreading the word about changing places toilets, including Mobiloo, and how they can improve inclusion for disabled children and adults.