Festive Greetings

Happy Christmas, Festive Greetings, Happy Winterfest, or however you celebrate, have a wonderful day.

Thank you for all your interest and support during 2017, it is much appreciated.

For 2018, my dearest wish is that all my family, friends and readers could find a way to enjoy life as much as my very special daughter. Here she is showing how it’s done…

Me abd B, Christmas 2017

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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!

 

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?