The Empty Room

What happens to an empty room? A room that no one uses?

It’s empty, and you feel the emptiness.

She’s not there.

Every day I open the door, pull back the curtains and open the window.

Every day it’s the same. Nothing has moved. The lingering scent of candles, perfume and hair spray gets fainter as the days pass. Blown away by the gentle August breeze. No empty mugs of tea, with little green rings in the base. No clothes discarded on the floor, no mess, no change.

Every day is quiet, oh so quiet. I’d even miss the podcasts, the American commentators that she loves. Her energy is gone, the whirlwind of activity. The gush of news every evening. The fabulous smells that fill the kitchen.

After a while the room seems to close in on itself. Stay away, it seems to cry as you dare to cross the threshold. Leave me undisturbed. As though it’s succumbing to a coma-like sickness. Pining for the person who is missing.

Empty inside.

 

The empty room belongs to my eldest daughter who was away for  2 1/2 weeks and has now returned, breathing life back into the room once more.

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The fear

After a really good day, I woke up with chest pains this morning. Again.

I thought I’d kicked them into touch after they became unwelcome visitors in my life last week.

I’m sure they’re stress related, as they followed a panic attack in town – I was on a very tight schedule: I HAD to get a pile of schoolbooks and the only bookshop that stocks them had a bomb scare while I was there and we were all evacuated. The panic attack wasn’t brought on by the bomb scare, nope, it was that no one could tell me when the shop would reopen, and I HAD to be home for 3.30 to meet B off the bus…

I woke on Thursday with chest pains, which wore off during the day, and the same thing happened on Friday, but they were barely noticeable and quickly wore off. Yesterday I had no pain at all. But now they’re back, and I’ll have to get them checked out, for the sake of the children if nothing else. Because two of them depend on me for most things.

I laugh when I hear how most people attend their GP once or twice a year. Not when you’re a carer. Not only do your children tend to need the doctor more often, but most carers I know struggle with a string of chronic health problems, even those in their twenties.

Sometimes I wish I could tell absolutely nobody if I ever got a serious illness – I think it would be easier to cope.

But that’s not possible when you’re a parent or a carer, whether for elderly parents or for children, especially children with complex needs.

You see the fear is not about the illness. It’s about logistics. How to manage their care, how to find the time to attend medical appointments and fit everything else in, who to tell, and how and when to tell them. Those are the things that worry me far more than any illness.

I HAVEN’T GOT TIME TO BE SICK!

After my last hissy fit about this topic I eventually received a letter from the Irish health service confirming that a full home care package would be put in place if I get ill. Which is very welcome, but still means I’ll be directing everything from my sick bed. Today I was trying to plan for all the scenarios, emergency instructions for my children just in case the worst happens, as well as trying to relax a bit, while still doing everything on the list (apart from exercise, I did have the sense to skip that today!).

Tomorrow I promise to ask for an appointment with my GP and hopefully it will be a wasted visit and nothing serious will be wrong, and I won’t have to fear another string of medical investigations, and how to fit them into my overbusy life.

That’s my biggest illness-related fear, what’s yours?

 

 

The Diary of Doom and other reasons to be cheerful

So last week I ran out of time and positivity, and no reasons to be cheerful got done. I’ve been feeling both guilty and a bit bereft since, especially as I’m heading into a stressful period, with school for my youngest beginning next week.

My head has been a disjointed mixture of happiness, stress, anxiety, fear and worry, so rather than inflict all those negative emotions on all of you, I’ve reconnected with the Diary of Doom, aka my journal, and hopefully I can park most of them in there. It’s a bit of a shame really, as something so pretty deserves to be filled with beautiful words, but still.

The Diary of Doom

I’ve taken a week off: From services, carers and my exercise programme.

B is at home all week, and eldest is away. So I can’t just pop out for a run and I’m doing lots of wheelchair pushing and a bit of yoga instead. And you know what they say about a change…

I cancelled the carers so I could switch off the alarms and escape from the schedule for a few days, even though it means doing everything myself. I’m actually enjoying it, but my back is protesting.

Of course, the paperwork and the admin doesn’t take a week off –
I have an appeal to complete within 21 days, a retest of the van, government deadlines to meet, and preparations for school. It’s hard to believe I spent most summers during the last decade down in Co. Wexford with the children. Bureaucracy has made that impossible now.

The nappies ran out, so one afternoon was devoted to chasing up the next delivery and sourcing some to tide B over. Their successful purchase was celebrated with cake, of course.

Cake, The Wooden Whisk,

There was a hospital visit for B, and despite all the health service bashing that goes on, she had an appointment and blood tests done in less than 2 hours.

One of my best friends for the past 40 years came to stay with her husband and daughter and we had a wonderful few days doing the tourist thing in Dublin, including only my second visit to the Guinness Storehouse, which has some very strange exhibits en route to the free pints at the top of the building!

A fish needs a bicycle, Guinness Storehouse,

Then there was the delivery of police traffic cones to ensure I can park the van outside the house even when all the parking space is taken by match traffic heading for the nearby stadium.  Huge thanks to #AbleHour, @cmcoughlan @SenatorJDolan  and @CMDIRL  for making it happen.

Finally, I’m delighted that my friend Carol is now blogging about cancer and disability, and here’s the link to her latest post: https://carolsramblingsblog.wordpress.com/2017/08/24/the-words-that-change-your-life/

For more reasons to be cheerful, head over to Lakes Single Mum who is the host this month.

Reasons to be cheerful – the simple things

It’s been another week of ups and downs, both of which have conspired to make me very late with this very important post with my weekly reasons to be cheerful. And yes it is important, it helps to keep me grounded and focused on the good things in my life, at least for while. It gives me a lift, and then I can tackle the problems. So here goes:

My severely disabled daughter B was very happy during the early part of the week helped by chocolate cake that she could pick up herself without it squashing into crumbs, and even a trip to Tesco was fun.

Got my van serviced, and despite its age, all it needed was a few new light bulbs. It got its annual wash and is now ready for the biannual NCT next week (the Irish MOT). Fingers crossed it passes.

My eldest daughter unexpectedly bringing me home a take away coffee on Friday. My eyes may have been moist. As I’ve said before: I hate crying, except when people are kind (or I’m grieving). Then I can’t help it. She also made me lunch, as it was a very stressful day, and I may write about that later.

You know I have a phobia of drilling, but I’m a dab hand with a screw driver (no sniggering please!) and doing little jobs like putting in door stops helps me feel more competent around the house.

Huge thanks to Fairview Parkrun, I really enjoyed my first time taking part, but I was beaten by a ten year old… 😶

That’s it for this week: head over to Lakes Single Mum for more happy posts.

 

Facebook Overload

Social media seemed like this new bright shiny exciting toy back in 2008 when I first joined Facebook. Reconnecting with old friends and making new ones from all around the world. Sharing parenting woes, discovering new strategies, learning about rights and entitlements for disabled children, and how to claim them.

But in recent years that shiny toy looks tired and shabby.

Last week I looked at my Facebook feed and I couldn’t see any posts by my friends. Instead it was a confusing mish mash of ads, news items, and posts by people I don’t know in groups I forgot I’d been added to.  I’m involved in so many groups and pages because I wanted to give back for all the help that was given to me. But it’s become overwhelming: that feeling that you have to help others every single day, or you’re a bad friend, a poor advocate. I know what I can do: I’m good at finding articles of interest to others, but sorting out the inevitable conflicts that happen on Facebook? I haven’t a clue. Wondering what to do has kept me awake at night, often over people I do not know.

So a year after I cut back on other social media, I’ve now cut back on Facebook too. I’ve left most of the groups I used to belong to (apologies to all my friends who added me), and I feel better already. My feed is less cluttered with depressing posts by people I don’t even know, and instead I can see news from my friends and pages I’ve liked. Why didn’t I do this before?

I’m not sure what to do next, but there could be more cuts and mutes and blocks ahead.

Sorry Facebook, you’re overloading my life with too much cr*p. And it has to stop.

 

55 and still alive

The title of this blog post was going to contain lots of ‘F’ words – not 4 letter ones I hasten to add – because I am feeling pretty fabulous right now. But it sounded a bit too cheerful for a birthday I was not looking forward to – because even though I’m actually a fairly optimistic person (except when under extreme stress) 55 just sounds old to me.

My 50th birthday was fine, because lots of us can expect to reach 100, can’t we? But now I’m half way to 110, it’s time to embrace the idea that I have more years behind me than ahead. And that’s a scary thought.

And I’m finally, definitely middle aged. I should be grumpy, grey, gloomy and saggy. Eeyore with a paunch.

Luckily that hasn’t happened yet, thanks to author and blogger Office Mum who passed on a free month’s gym membership that got me over my gym phobia, and a friend who encouraged me to join her running group. And this week saw confirmation that I have lost over a stone in weight over the past 18 months with no calorie counting involved and I haven’t given up eating cake.

Life has also been slowly improving – with a number of deep dips – and so between the exercise, and a restricted menu due to stomach problems, I’ve been able to tear up my regular prescription and ditch everything on it, including stuff I’ve been on for ten years or more for a number of different diagnosed medical conditions. The weaning process wasn’t easy, but I’m glad to be rid of all the horrible side effects from the medication. Of course I’m not the same person I was: I’m stuck in never ending menopause and I need to get my cholesterol level checked and I still have anxiety, but it’s manageable for now, though that may change once school begins again…

The sad thing is that the physical and emotional problems needing medication were probably the result of severe stress, most of it caused by the State and other people. And most of it completely unnecessary and avoidable. And many of my friends have experienced similar issues, or are going through hell right now. It’s so wrong and leads to so much misery. Just why????

Worse still the state expects carers like me and my friends to keep caring indefinitely, and yet the messages from politicians tell us that our health and fitness is our responsibility. How does that work if you don’t have respite or a service for your loved one, or spend your days at appointments and form filling? Or have lost your home and income due to your caring responsibilities?

It doesn’t make any sense, but enough of the ranting as this is supposed to be a cheerful post, and back to the birthday and the reality of being 55. I seem to be healthy, I’m comfortable with the way I look, I’ve accepted that I’m socially awkward – and luckily my friends seem to have accepted it too – I’m a stuck at home carer, but when things are calm, it’s not a bad life, I can see that now. So this is me, looking forward and feeling very much alive.

Joining in with Reasons to Be Cheerful, which is hosted this week by Lakes Single Mum.

 

Sticking my old head in the sand and having fun doing it

I *may* have mentioned that I have a fairly scary birthday coming up soon, and I am in complete denial. I’m in fear that I may have to begin acting my age, wearing beige cardigans, and going to Neil Diamond concerts (not my thing, apologies if it’s yours). So if this post seems a little crazy, that’s why. I’m having a last hurrah, with the expectation of old age descending like a metal shutter some time next week…

In the meantime, I have all these reasons to be cheerful:

…My disabled and non-verbal daughter B clearly said ‘mum’. I don’t know if it was a word or just a sound but it was lovely to hear.

…Being asked if I was B’s sister at a communion party – it’s amazing what long hair and sunglasses can hide!

…The house now has two ramps for B, so she can enter and exit through the front door, like everyone else. And she’s enjoying it too.

…A flower in bloom, one I planted myself, and trained up a trellis that I put up myself, with the help of my eldest daughter and a drill.

Bloom, flower,, clematis, trellis.png

…Beating the kids at a fitness challenge at a local Family Fun Day, and B loving every minute of it.

Smiley, B, disabled daughter,

…Climbing the Wishing Tree on the top of the Hill of Tara to tie a wish for a friend, after much coffee, madness and cake…

If you enjoyed reading this, why not head over to Mummy from the Heart for more reasons to be cheerful.

 

On celebrating the saints and scroungers during Carers Week

Because that’s how the public sees us.

Every story about the selfless middle aged woman* caring for elderly parents and disabled children feeds into the saint narrative, which reaches its peak during Carers Week and the annual carers’ awards. And while I’m very happy for those who win and enjoy the accolade, there are carers like me who find the whole thing a bit patronising: it’s like society feels that all we need to keep going is an annual pat on the head.

No mention of real support, pay for the work we do, pension arrangements for when we are too old to care, or anything that really matters.

The rest of the year we’re painted as scroungers.

Of course keyboard warriors like me were blamed when Leo Varadkar (likely to be the next Irish PM) had to row back on his rhetoric about being a leader for people who get up early in the morning. He had to add in carers, and others. But the genie was already out of the bottle, as the above article shows, giving permission to portray carers as whingy costly parasites, so long as it’s not Carers Week.

I write about my life as a carer, and luckily the words pour out of me head like a torrent: I don’t have to sit down and wonder what to write, instead I find myself jotting down thoughts whenever I have a spare few seconds, often when I’m doing something else as well!

But it is hard to find the time or energy to write when you’re a carer, so there’s very few of us who do, but I’d like to introduce you to two friends of mine. Like me, neither will be attending of the events for carers during Carer’s Week. Because they can’t.

This week is Carer’s Week. There will be a wide variety of events across Ireland for carers to attend – lunches, coffee mornings, walks, pamper events with manicures and massages, nights out with music and dancing – all to celebrate and treat the much deserving carers. But, how many of the nation’s carers can attend? I can’t. I’m housebound while my son is bedridden. I have no one to relieve me so I can go to any of those events.I have no one to relieve me so I can go to any of those events.

Read more at Transitioning Angels

We’re back to no sleep. But with Luca I think he has constipation issues again, he’s back on movicol.

Emmy was supposed to go for a blood test today but no one up to the hour drive there and hour drive home and we’re still a bit under weather so I cancelled the appointment, all I seem to do lately is cancel appointment after appointment

We’ve reached the stage where we get no energy boost at all, just permanemt tiredness and feeling flat, the weather isn’t helping. 

I bought cbd capsules for myself during the week, they should be here today, can’t wait to get started as I’m in a shit heap, constant fibro flare and pains in stomoch from IBS.

Read more at the Spectrum Facebook Page.

Both write about the harsh realities of extreme caring in a world that doesn’t really want to know, doesn’t want to think about it, doesn’t want to imagine that it could happen to them too. Even though it could.

 

*The peak age for caring amongst women was 45–49, with 11.2% of women in this age group providing unpaid care, amounting to 572,680 hours of care every week, according to the 2011 census.