Out of My Comfort Zone

What do you do when you’re feeling anxious and depressed? Perhaps it’s not a problem for you. Perhaps you meditate or exercise or take a bath or just breathe. Me? I tend to curl up on the sofa with Netflix and maybe a glass of wine. But all that does is take my mind off things for a while. The stressful routine of a carers’ life does not work well for someone like me who thrives on variety and new challenges.

And while I can’t easily change my current circumstances, I can make little changes to my daily routine, and this week I managed several big ones!

Smallest first….

I cut my own fringe. I’m always afraid of making a complete mess of it, but no one has noticed so I think it will do until I manage to book an appointment with the hairdresser.

Meeting new people for world mental health day. Always scary. Will I make a complete eejit of myself due to nerves? Will I trip or spill my coffee? In fact I enjoyed myself and it was great to have a brief chat with others who are dealing with crises similar to the one in my own family.

Finally, I went wall climbing at the nearby Awesome Walls with my fabulous running group (on a day off). I must have the climbing gene, as when I was a small girl I climbed trees and rocks with no safety harness and often on my own. Not usually a problem apart from the day I fell into a hollow tree…  And some of my friends will recall that even last summer I seized the opportunity to climb a tree when no one else would. Awesome Walls looked absolutely awesome. And it was. I don’t think it will become another hobby because it’s quite time consuming and lacks variety, but as an occasional treat, bring it on!

Awesome Walls collage October 2018

So those are my three challenging reasons to be cheerful for this week. Check out more at Lakes Single Mum.

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Left Outside Alone

It’s Budget Day today in Ireland and for all I care it could be Budget Day in Outer Mongolia. I used to care. I used to march, I used to campaign for better healthcare, universal child benefit, better services for disabled children and adults. And what has happened? Almost nothing. Even though we now have a Minister for people with disabilities, very little has changed, except for the lucky few.

I can no longer bear to listen to most politicians, as they don’t sound genuine any more. I feel ashamed of my former profession – public relations – which was supposed to be about good clear communications, but is now about spin. When a trained politician speaks you cannot trust that anything is true, what they say, how they say it, or even the tone of their voice, because everything has been rehearsed and planned, and that goes for many representatives of organizations and companies too.

On the other hand, I do think that most politicians work extremely hard, and don’t get credit for that. I think many go into politics with high ideals, but lose their way, due to the shiny baubles of power, influence and pay. Just look at our current President, who said he was only going for one term, but is now looking to be re-elected for another seven years. People tell me he’s doing a good job, and I suppose we should at least be thankful that he hasn’t done anything bad or embarrassing.

I’m expecting the Budget to be all about throwing money at as many people and organizations as possible to keep them quiet, then taking it back in increased indirect taxes and charges for services. More complexity to keep accountants, lawyers and public servants in their jobs. There will be no vision, no grand plan, no hope of any real change And certainly nothing significant for disabled people or their carers.  We’re left outside alone.

The problem in Ireland for many people isn’t high taxes or low welfare, it’s the high cost of living and poor services. Money cannot buy the services my children need for example, because they don’t exist!

Respite for B is a good example. As a family in crisis we were given a Case Manager, and one of the items on the agenda was respite. She’s very lucky now to have a personal assistant who brings her on an outing every second Sunday, and it’s been suggested that the respite box has now been ticked and it’s likely that there will be no overnight respite because it is simply not available for adults with her high care needs. Lack of real respite means I haven’t slept properly for years, can’t go away on my own, can’t go to family weddings, comfort sick relatives in person, or support friends in need. At the moment I can’t even go out in the evening because of the problems affecting my youngest. And that’s just one of the many many problems that seem insoluble. Even my eldest daughter is affected, I need her help when she is at home, and she worries about the future and what demands will be placed on her.

You see the State has very little interest in families like mine unless a crisis happens, and then they wring their hands and offer just enough to try and stop things getting worse. We’re just considered dead weight. Outside society, outside the economy. Not of interest. Especially not of interest to Ministers of Finance who are only interested in balancing the books and pleasing their own supporters.

 

 

Reasons to be Cheerful 5.10.18

Once again I’m so thankful to Becky and Michelle for hosting Reasons to be Cheerful, and reminding me to look for them: This week has been mostly about self-care to enable me to keep going as a carer.

#MagicOfOctober – this Instagram challenge from theclotheslines.ie is distracting me from other thoughts as I try to find something to fit each day’s prompt.
Instagram #MagicOfOctober
Bargains – chocolate counts as self-care I think, and what could be better than a bargain 10 cent bar I found in my local Tesco!

Zumba – I know I’ve mentioned Zumba before, but dancing is proven to be good for the soul, mental health, and brain health too, and it’s the one weekly fixture I hate to miss.

Running – a lot of running happened this week. Beginning with an assisted run with B on Saturday at a nearby Parkrun, when we got to test a real running buggy, and I hope to blog about that experience properly soon. On Monday I went for a run along the Royal Canal with a pal, and yesterday I was absolutely delighted with this result from a training run with my Phoenix Park running group.

Strava Phoenix Park Run October 2018

Hope you have a great week xx

 

 

A light for when all other lights go out

It’s been another week of emotional earthquakes, and I don’t know if I’m numb or shattered in the face of it all. But on Monday a little light was thrown into the disaster zone of my life. A mystery parcel arrived from an unknown sender and when I opened it, I found it full of good things and encouraging messages, including this candle.

A light for when all other lights go out

I can’t tell you how much this thoughtful gift means to me. I will be dipping into it for weeks, and one day hopefully I can pass on the favor to someone else in need.

The package was actually sent by Michelle, aka Mummy from the Heart, the founder of the Reasons to be Cheerful linky that I have been doing since 2010. Finding positivity really does help to bring light when all else seems dark.

It also reminds me of the power of those people who brighten up or illuminate our lives in different ways.

My disabled daughter whose smile can light up a room – or even a stage – which she did last Friday when she made her acting debut at Dublin’s Helix Theatre, part of the cast of The Big Musical Mashup. I never thought I’d see my daughter on the stage, so huge thanks to her service for arranging it.

The Big Musical Mash Up

On Wednesday I attended the launch of a report designed to shine a light on some of the darker practices in Irish schools, and I was there to support one of the brave families who came forward to tell their story. Not a cheerful day, but hopefully a good day for the children of Ireland if this report leads to positive changes in the way that disabled children are treated. It can’t come soon enough.

Seclusion and Restraint report

Yesterday I brought a little light into my own life when after an emotionally difficult meeting I took myself off for some grown up time and attended an exhibition. Okay so it was an exhibition of wheelchair accessible vehicles, so still disability related, but everyone I spoke to was positive and constructive about my mad ideas for my next van, so I came home feeling hopeful that maybe one of my dreams can still come true.

R2BC at Mummy from the Heart

Reasons to be cheerful 21.9.18

I removed my rose tinted blogging specs this week to mark the anniversary of the current crisis. To keep it real and tell it like it is. But I don’t want to lose the positivity on here either, so I’ve been scratching around to bring you some reasons to be cheerful this week too….

An unexpected outing

B and I plus a friend planned a flying trip into town to book theatre tickets as a birthday treat, but due to a mix up over the box office opening times we ended up hanging around for a bit of light shopping, dinner out in a local hotel, and watching a race on the water in Dublin’s Docks. B loved it!

Normality

A brief taste of normality when I attended another meeting of the Human Rights Committee at my daughter’s adult service. It’s empowering and encouraging to sit around a table with an inclusive group who are committed to making positive changes in the lives of disabled people.

Mornings

My morning alarm has been moved forwards by 15 minutes to 6am – always my watershed time, and despite a difficult week, I feel much more awake than usual, and I’ve got more done in less time so far today.

I’m also making an effort to appreciate the semblance of normality when my youngest is asleep – like the option to close internal doors.

Swimbags

As I trudged from a nearby housing estate to B’s service for her assisted swim laden down with a rucksack, two pool noodles, her special but awkwardly shaped float and a selection of towels in another plastic bag that had sprouted an inconvenient hole, I decided there had to be a better solution.

Thanks to Google, I found one. Its unfortunate name is Big Mummy Mesh Bag, and while I haven’t had the chance to try it out yet, I can confirm that it easily fits four towels and our swimming gear, so it’s looking good so far.

Birthdays

And finally, it’s my eldest daughter’s birthday tomorrow. She’ll be 26. I’m as shocked as you. But she’s grown into a mature, caring young woman who is determined to change the world for the better. I believe she will and I’m very proud of her 💕

R2BC at Mummy from the Heart 

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.

 

 

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.