Reasons to be Cheerful 9.11.18

Another reason I love this linky is because I think it actually makes me do cheerful things to make sure I have something to report! And I do…

Christmas Songs

I was giving out on Twitter on November 1st when my disabled daughter’s favourite music channel suddenly began playing non stop Christmas hits. But B is thrilled! I had no idea she would like Christmas songs so much, but as my eldest pointed out, they’re mostly upbeat, tuneful and happy, unlike much of the stuff she sees.

Books

After a break of about 6 months, I am finally reading again: I really enjoyed and learned from a book by an autistic blogger I follow: Aspies Hate Christmas by Amanda J Harrington. And now I’ve begun reading the Killing Eve series by Luke Jennings after watching the TV show

Funrun

I took a chance and entered a family fun run in aid of Brian Tumour Ireland with B, planning to use her running buggy without any arranged help. But people are very good and within second of seeing the two of us plus two buggies someone offered to assist, both before and after the run.

Shrek the Musical

Tickets were bought for this to celebrate a joint birthday for B and my friend’s son and we all went together to the theatre. Sadly the evening did not end well for B, but I really enjoyed the chance to dress up and make myself up too.

A New hat

Another bargain from Lidl that’s warm snug and fleece lined. I love it!

New hat

Going to the pub

I brought B with me to a nearby pub for an hour to have dinner out with friends. She felt very grown up, and all was well at home while we were gone.

Exercise

The more demanding the better, as it gives my stressed head a break. This week I went to my zumba class and for a run with my running group in the Phoenix Park: the autumn colours were stunning.

Phoenix Park

Power chair

B got to try out a powered wheelchair with specially adapted switches and she got the hang of ‘Green means Go’ within seconds. She will need a lot more training before she would be approved for a power chair, but it was a great start and I was very proud of her.

Powerchair training

More reasons to be cheerful over at Mummy from the Heart.

R2BC at Mummy from the Heart 

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No place for disabled people

The handles of her wheelchair were touching the door. The footplate was touching the toilet seat. If she could stretch out her arms, she would easily have touched the walls on either side. This was the disabled toilet in our local accident and emergency department.

My daughter wasn’t even the patient. But I am her sole carer, so if I have to go somewhere outside the hours of her day programme, then she usually has to come too.

I had to seize an opportunity and we left the house in a mad rush, just a few random things thrown into bags and hung off the back of the chair. No time for her to use the toilet, I just had to hope that there would be a usable facility available and that we wouldn’t be waiting too long. I *may* have been a bit too optimistic.

Phone calls were supposed to have been made, and we were promised we would be met on arrival. It didn’t happen. And when I saw how many people were waiting to be seen I understood why. There wasn’t an empty chair to be seen. Luckily my daughter was okay – one advantage of bringing your own seat with you everywhere you go.

Once I realised we were in a queue of indeterminate length, my first priority was getting help, and this is where Facebook is a life saver for me. I did text a couple of people first, but they were not available. And yes it was close friends who responded again, but I felt more comfortable putting out a general plea instead of approaching them directly and perhaps making them feel pressurised.

Being stuck in A&E means very little choice of food and drink, especially if you have a disabled daughter who needs a mashed diet. Again my friends were able to bring something suitable for her, and later a bag of (very good) chips for myself and the patient.

But my friends couldn’t really help with B’s toileting needs. I had to sort that out all on my own. I sat on the toilet seat and changed her while she lay half out of her moulded seat – dangerous and uncomfortable for both of us. I’m still amazed I managed it at all.

Later she was crying due to needing to go again, but I was trapped while the patient was getting attention and there was nothing I could do to help her until I got her home.

Really hospitals are no places for severely disabled people, even though the busy staff were friendly and welcoming and made sure we were seen quickly.

This particular hospital is due to get a new Accident and Emergency Department soon, and I really hope that a changing places toilet with a bench and hoist is part of the plan.

My daughter is very healthy right now, but that could change at any time, and she should have the same right to a suitable toilet as everyone else.

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.

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