Slowing down

Some days I clock up 10,000 steps by 10am, according to my new toy smartwatch. Though I think its definition of steps is generous. Still, rushing around at 90 miles an hour has been my modus operandi for as long as I can remember and last week it caught up with me.

Yes readers, I was felled by a virus. Not a dangerous virus, but combined with stress and lack of sleep, the effect was quite scary. For a couple of days last week I thought I was going to collapse. Then lulled into a false sense of security by a good night’s sleep I took part in Saturday morning’s 5 kilometre Parkrun, pushed myself to the limit on a freezing cold morning, was the third female to finish and ended up in the GP surgery on Monday evening after also spring cleaning the house and car before the arrival of visitors.

The GP prescribed rest with a rueful smile, knowing that rest is not really possible when you are a lone parent carer. But something had to give.

I’ve slowed down. I’ve stopped obsessively exercising for now, and I’m trying to move more slowly, and think more slowly: finishing one train of thought before rushing on to the next one. I’m even doing a bit of mindfulness. It’s not as annoying as I feared. And slowly I seem to be improving.

So if I’m not around so much, that’s why. Of course I might decide I like slow living, but somehow I suspect I will back to my normal racing pace before too long!

 

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My Sunday Photos

Hello! Just popping back in because my disabled daughter B and I had a lovely afternoon yesterday at the Rainbow Junior Arch Club Christmas Party. As many of you will know, the Arch Club is an inclusive social club for children with special needs, disabilities and autism, and we have been involved for the past 16 years – B still enjoys it even though she is no longer a child, and it works especially well for us as it has a fully equipped changing places toilet.

You may also know that we are looking for more families to join us, so if you know anyone in the Dublin area who may be interested please ask them to message the club via the Facebook page by clicking this link:

https://www.facebook.com/rainbowjuniorarchclub/

Rainbow Junior Arch Club, B, happy
With Lisa, our Club Co-ordinator
B and Santa
With the man of the moment!
B, Angel
Happy Christmas!!!

 

 

When you can’t make lemonade out of lemons

When I began this blog I hoped it would be a place to celebrate all that’s positive about caring for a young disabled adult. As you know, life has a way of skewering the very best of intentions. Doors are still being slammed in our faces, and I’m feeling exhausted, ill and overwhelmed most of the time. So I’m planning to take a proper break over Christmas – the phones are not manned and there’s no pressure to follow this up or chase that down. There’s no one there, everything is on hold until January. I’m determined to take a break and see if that clarifies what I should do next. I may write, I may not, I’m not going to pile any additional pressure on myself.

Even the (far too small) Christmas tree is sitting forlornly in the living room, undecorated and unloved. And the news on new bungalows is that no way have we any hope of purchasing one now and probably not in the future either.

Forlorn Christmas Tree

The Christmas tree will get done. The essential things will get done. My two girls are doing well, and a night out to see Star Wars has been booked, so I’m hanging on to those things even as life keeps pelting lemons at me. And since I’m now allergic too all things citrus, I can’t even make lemonade!

Are you shocked at the idea of sleeping in the kitchen?

This is a post about middle class privilege, I accept that. But life is not always easy even when you’re not homeless, or desperately trying to find somewhere safe, secure and affordable in the private rented sector.

I know how lucky I am, but I do find life difficult, and it’s only going to get harder as I hurtle towards retirement age. Oh wait, I’m a lone parent carer, so there will be no retirement, and no State pension either.

My current home is no longer manageable, and I got very excited last summer when I saw that a development of new bungalows was being built within commuting distance of my disabled daughter’s adult service. I got to see a sneak preview of how the interiors are likely to look yesterday, and unlike my current home, everything will be flat, spacious, open plan with wide doors, warm, secure, easy to clean and maintain. I also got told that all the bungalows in the development have been appropriated by the local council for social and affordable housing, so I can’t buy one. Do you know how often new reasonably affordable bungalows are built in the Dublin area? Almost never. I totally understand that the people on the local housing list are in greater need than we are, but does the local council need ALL the bungalows? Because if something doesn’t change I’m going to burnout eventually and then the State WILL be left with a hefty annual bill for my children’s care. But does anyone join the dots? It seems not.

To rub salt in the wound, there’s an article doing the rounds today about the 13 most depressing rental properties in Dublin that highlights the unacceptability of sleeping on a sofa bed in the kitchen.

Because that’s what I have to do now. To make sure I wake up and get up to meet my daughter’s needs during the night. And I was very grateful to the friend from whom I bought the sofa bed too.

But it’s not really sustainable long term. Or perhaps you think it is?

After all, I’m only a carer.

new home, disability
B was very taken with the house we saw yesterday that illustrated what the bungalows would be like

 

 

Scraping the barrel

We need help. We’re not coping. But with one exception, we’re being ignored. Just like so many other families with disabled dependents. I’m sure I’ll manage to keep going, so long as the universe doesn’t throw any more curved balls in my direction. And perhaps so long as I keep doing my reasons to be cheerful and reminding myself of the good things, even when they’re very small. So here goes:

…My annual panic over the fire warning about Christmas trees is finally solved thanks to finding a shop selling stands with a built in bucket for watering (from Woodies DIY if you’re interested and live in Ireland).

…A nasty looking ‘mole’ turned out to be something much rarer – and completely benign – when I got the biopsy results this week. It was actually a bad reaction to an insect bite!

…With a bit of help, I’ve cleaned up the house for Christmas.

…A simple trip to a local shopping centre was magical for my disabled daughter, she was overjoyed with the Christmas music, the lights and sparkly decorations. Her happiness was infectious.

…For the first time in years, I made an apple pie – on request – and apparently it was good.

Check out Lakes Single Mum for more reasons to be cheerful, and I hope you have a good week xx

R2BC-badge-2016-1024x683

 

Feelings

It’s almost 6 o’clock on a shivery dark Friday evening, but I’m getting a few hours break from most of the crises piling up, like a stone wall I can’t climb over. Right now, I’m can lean back in its shelter and try to get my breath back. Try to breathe evenly, to feel the stony weight leave my shoulders for a while.

I’ve been firefighting without a real break for 2 1/2 months, and its taken a toll. Things are slipping, things haven’t been done, people forgotten, time has rushed by, and also dragged, as little progress has been made in so many areas. So many things are still the same. And I’m so so tired.

I was called to a meeting about me last week. I thought I was going to be admonished, perhaps for not being a stricter mother. Instead it was supposed to give me support and a space to talk about my feelings. But I couldn’t think what to say. I think my feelings are buried very very deep at this stage, and even I can’t remember where. Mostly I just feel numb. It gets me through. Any other feelings just get in the way of functioning. Especially the angry ones! Therefore they are not useful and get stomped on as quickly as I can manage.

Except now?

I’m going to have to get back to the chores in a minute, but I’ve realized I am feeling something right now. I’m feeling lighter. And that has to be good, right?

Stress, steps, signing up and a surprise

Stress

Let’s just sprint through the bad stuff: life is still stupidly stressful: even my eating and sleeping is now affected (this almost never happens!). I’m lucky that I’ve been offered counselling, but emotional support will not improve things, it’s action and solutions that I need, so I turned it down.

What to do? Well when you can’t fix the big problems, you take control of the little ones.

I may not be able to fix the house, but I can mop the floor.

I may not be able to get all the services that my children need, but I can help them make positive progress every day.

I may not be on top of the special needs and household paperwork, but I’m keeping the lights on at least.

I may not be able to go to the gym right now, but I’m running to appointments if I’m the only person attending.

I may have just tripped in the hall due to tiredness and stress, but my parachute training kicked in, and I fell beautifully and only have cuts and bruises to show for it!

I may feel that I can’t cope with it all, but there’s always self care – today I plan to combine an essential trip to the pharmacy with a nose around the new local M&S food store that opens today 😍

Steps

Christmas came early this week: Back in July I backed a Kickstarter project for a budget smart/fitness watch and my ‘gift’ arrived a few days ago and since I needed a boost, I opened it then and there. Of course I haven’t had time to suss out exactly how it all works, but I am enjoying some features: having the weather on my wrist, being able to turn off alarms without dashing for my phone, and most of all the revelations about the amount of activity I do: It seems I manage more than 20,000 steps every day without doing very much at all. I did wonder if the watch was counting seconds not steps, but the numbers do stop increasing if I sit down. So every time I think I’m being lazy, all I have to do is look at my watch and it gives me a little boost.

Ticwatch S

Signing Up

Yes I know I have ‘a lot on my plate’, but when I was invited to a meeting and asked to join a Human Rights Committee that only meets 6 times a year, I couldn’t say no. I was like a puppy with a new toy at the first meeting because it will let me use my skills, do something I’m good at, and give me the chance to feel useful again.

The Surprise

After taking part in the launch of the debut novel by writer and blogger Nicola Cassidy, it was a wonderful surprise to get a signed copy of her book December Girl in the post together with a few goodies. So far, this historical novel set in Ireland and London is a joy to read, with a feisty heroine whose story make you want to keep reading. If only I had more free time!

December Girl

So that’s this week’s update and reasons to be cheerful, head over to Mummy from the Heart for more.

 

 

 

 

The Princess Party

On Friday afternoon it was just another ordinary school classroom. Twenty four hours later, it had been transformed into a magical grotto full of light and colour, music and balloons, a candy cart and the sweet smell of cake. A wonderland fit for a princess. My princess. It was finally time to celebrate her 21st birthday.

And celebrate we did. With plenty of music and dancing, a gorgeous cake, family and lots of lots of friends, old and new. There wasn’t even time to take many photos: we were all too busy having fun.

(Most photos have other children in them so cannot be used here)

Why a school, you might be asking? Why not a swanky hotel? Well the school is home to the Rainbow Junior Arch Club, so it is familiar to B and has everything she needs, including a Changing Places Toilet. It meant all the children from the club could easily attend, as well as many former club members who are all grown up now, just like B. And finally because the school said yes to my request and I am very grateful to them for that.

As I wrote last week, with everything else going on at home, I could not have made this happen alone. Once again I asked for help, and once again my friends responded. I won’t name them on here, but they know who they are. And I hope they know how much I appreciate everything they did, from finding my daughter’s costume to making the invitations, to decorating the room and making sure everything ran like clockwork on the day, so I could spend the time  with B, making sure she had the time of her life….

It’s an afternoon I will never forget and the best reason to be cheerful I’ve had in a long long time.

R2BC at Mummy from the Heart 

Celebrating carers who always put others first is a dangerous message

Once again I’m seeing red at the headlines around the Carer of the Year Awards. Always putting others first is not a good long term strategy. I know women who’ve died young because they were too busy caring to get their health needs met, let alone anything else. If you’re a carer for life, as I am, you have to look after your physical, mental and emotional health in order to keep caring without burnout. But these constant media messages about selflessness put huge pressure on carers not to look for help, and relieve society of the guilt they feel about not offering it — with some exceptions, of course.

As I am totally overwhelmed right now, I am going to recycle another old article, that says a bit more on the same subject, with apologies to the organisers and to those who do enjoy these awards.

When you become a carer, everything changes. Not just your own life, but society’s expectations too. No matter what you were like before, you are immediately obliged to take on saintly qualities and become endlessly patient, loving, energetic, unselfish, undemanding and uncomplaining, with a beatific smile permanently plastered on your face. Don’t believe me? Look at the Carer of the Year Awards. Now obviously I have huge admiration for the winners, they manage the most challenging situations and care for the longest number of years. But what do these awards say to the rest of us?

Keep your head down, keep caring and if things get really tough, you might get a day out at an awards ceremony in 30 years time.

Don’t complain, don’t look for help, there’s many people who are much more deserving than you.

You made it through the day? Congratulations on “surviving”.

Having special children makes a family special (well actually it’s made me cross, fat, sick and tired).

You think your life is difficult? Well guess what, it’s going to get harder and you will still be expected to keep going.

“I’ve learned that you can keep going long after you think you can’t.” Except when you actually can’t.

Yep, these are the messages that we hear all the time. They may help carers to keep going, they may find them inspiring. I understand that, I really do. But sometimes they just make me feel like screaming…

In the words of the song, Is That All There Is?

Is getting through another day all that we have to look forward to? Well I think that carers deserve better than that. I want more, both for me and for the other carers that I know. Somewhere out there are carers whose lives do not resemble those of the award winners. I want to hear about them.

Where are the stories of carers who have made a conventional success of their lives? 
Who have careers, who set up businesses? 
Who live in nice homes, enjoy hobbies and nights out, have great respite?
Whose children are settled in quality residential care, and who don’t feel guilty about it and are not ashamed to say so as they know that they’ve made the best decision for their family.
Who go on holidays, for goodness sake? 

Yep, maybe they needed a lot of help to achieve these things. So let’s celebrate the people who helped them. The services that make a difference. Let’s tell the world that many carers need that help, very very badly. They are not bad people. Everyone has a breaking point. Congratulations if you haven’t reached yours yet. But do not judge those who have. It could be you tomorrow.

 

 

Unpalatable truths

I was so sure I was on the right path. The future I had sketched out for myself and my disabled daughter was starting to take shape in real life.

Perhaps planning and hoping too much is a bad idea?

The ongoing two month crisis here and the gentle comments made to me this week mean I have to face some unpalatable truths, and reevaluate everything about this family’s future. So I’m beginning to sketch out alternative plans and reaching out for advice, but as I no longer write about all the issues affecting this family, I can’t tell you any more on here.

So I thought I had no reasons to be cheerful this week, but there at least some reasons to be grateful…

…I got to most of my Zumba class again – the one chance I get at the moment to completely switch off for a while.

…That hour between 5 and 6 pm when my eldest daughter arrives home from work, and we talk about normal stuff and laugh at the crazy bits too.

…My friends who rallied round to help with a very special event happening later today. It is not an exaggeration to say I wouldn’t have managed it alone. THANK YOU SO MUCH.

R2BC at Mummy from the Heart