The Waiting Room

It’s all honey blonde and pinky red tones with shafts of sunlight making geometric shapes on the floor and warm curved walls to hug you as you sit and wait. But there’s also creaky hard seats and noisy floors that echo with the rhythm of shoes and boots and runners making a cacophony of sound that ebbs and flows.

The door opens and in they go. The door shuts. You’re left outside to wait. Your stomach churns as you wonder how the appointment will go today. You try to read something, write something, concentrate on something, anything that will distract you from fixating on what is happening behind that implacably closed door.

You listen to the sounds of others waiting: cranky children, the lower murmur of women chatting, the rustling of paper and doors opening and closing, voices raised in excitement as gossip is exchanged. The ring of phones and the coughs and splutters of the sick and old.

You sit and wait and wait and wait. How did it come to this?

You’ve become the person who knows almost nothing, but is expected to do almost everything.

Then the door opens. All looks well. Phone away, fix welcoming smile on face, drive home. Another hour spent in the waiting room is over. For another week.

NB I’m cheating slightly as this post is not about my disabled daughter.

 

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You Too versus #MeToo

I’ve kept my mouth shut so far on #MeToo, but foolishly I cannot seem to keep quiet any longer. That’s because of the generational divide that seems to be opening up between women my age and older, and the younger generation on the topic of sexual harassment under the #MeToo campaign.

I am sad to see so many older female icons like Catherine Deneuve being attacked for expressing an opinion on the #metoo campaign. But I actually wish they would stay quiet, or at least be a little more nuanced. Because warning of potential consequences of the #MeToo movement is fairly pointless. No one knows. The main consequence of speaking out is that the media are now salivating at the prospect of portraying this as a battle between different groups of women (just like the stay at home versus working mum debate) and this has the potential to totally obscure the original point of the campaign. So please can everyone calm down and stop rising to the media bait.

Yet here I am, speaking out too.

Because the world was a different place when we were young. And perhaps we have internalised misogyny, as was said on twitter this morning. But there was no Stay Safe programme in schools to help us work out what was acceptable, there was no internet to tell us, and we didn’t confide in our parents in those days either. We just dealt with it as best we could, and we’ve been dealing with it for 50, 60, 70 or more years, but not necessarily in ways that would be acceptable to today’s women.

Sexual harassment on the street? Change the way you dress. An older man puts his hand on your leg when you’re eight? Keep out of his way. Factory production line stops and cheers as you walk through in your suit and high heels like they’ve never seen a woman before? Hold your head up high and concentrate on not tripping over. Work colleagues bring you to a lunch time pub with a stripper? Make them sit outside.

These are some of the challenges I have dealt with over the years. I haven’t forgotten them, but I don’t think they traumatised me.

And remember I have always been socially awkward, always jealous of those women (especially Liverpool and Dublin women) who always seem to have a smart answer for any man who dared to give them grief.

Hopefully if the #metoo campaign succeeds, it will make life easier for all women, in all situations. But I don’t think that misogyny will completely disappear, I think it will just go underground and women will still need to be ready and able to cope with it at times.

Relationships between younger men and women may well change as a result of this campaign, but hopefully it will all work out in a positive way: every time I see a young dad hugging his child to his chest in a sling, my heart lifts at the changes that have already happened.

At the same time, I think that most of us older women have the confidence and experience to continue our relationships with men in the way that we choose. We shouldn’t be criticising the younger generation for the changes they want to see.

It’s true that the behaviours that negatively affected my life are not covered by the #MeToo campaign as far as I know, and I do not write about them publicly. But perhaps if the campaign really succeeds, it will ultimately improve all human behavior. And that would certainly be a very good thing.

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

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!

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?

Why middle aged women wear cardigans

Today is #WorldMenopauseDay and I consider myself an armchair expert as I’ve been stuck in this unpleasant life stage for MORE THAN TEN YEARS! Don’t worry, dear reader, this only happens to a very small number of women.

Anyway, moving swiftly on, I’m sharing something I wrote elsewhere, with a few new additions. I hope it doesn’t scare you too much…

You see the menopause is a bit like childbirth, but without the possibility of a baby once you’re done. Some sail through it with no symptoms and no problems. Some stoical women just get on with life. Some are saved by HRT. Some swear by this potion, or that regime. The rest of us just drink wine. Even though we know it makes our symptoms worse.

Possible Symptoms

(These have been most of mine, I’m sure there are many, many more. One of my friends just blames everything on the menopause. It’s easier that way)

…Severe headaches

…Aching joints

…Night sweats

…Exhaustion

…Confusion

…Irritability

…Anxiety

…Depression

…Memory Loss

…Wrinkles

…Weight Gain

…The Hot Flush.  Queen of all the symptoms.

They will remind you of labour contractions, as they build like a wave…

1. You start to feel irritable.

2. Your ailments become ten times worse.

3. You begin to feel dizzy.

4. You have to stop or slow what you are doing.

5.  You can’t think, you just have to try and breathe through it.

6. You start to heat up, it prickles and burns.  Then you start to sweat.  A scarlet flush may creep up from your chest.

7. Just when you think you can’t take any more, it all fades away.  Until the next one.  Which might be 10 minutes later.

The pluses

It took me a long time to think of these…

…Bigger boobs (whether you want them or not!)

…No more periods.

…A final farewell to spot cream.

…No more fiddling around with bits of rubber.  Or whatever it is you use.  Except you can’t do that immediately, or you could end up with a ‘change of life’ baby.  It does happen apparently.

…You can do as you please, and dress as you like.  Believe me, unless you’re Sharon Stone no-one will care any more (with the possible exception of any kids you may have), and there’s a certain freedom in that.  Time to embrace your inner eccentric!

What you can do

Well I tried everything.  HRT was wonderful, but did not agree with me.  I spent a small fortune on fancy supplements and special foods, none of which made any difference at all.  In desperation I even bought a ‘magic’ magnet that you put in your knickers….what was I thinking?

What does help

HRT: a miracle for some.

Exercise: even though you won’t feel much like it.

A healthy diet: sounds boring, but you’ll probably want to eat more healthily – munch on a burger and it will sit like a rock in your stomach, weighing you down and making you feel worse.

Friends: more important than ever.

Laughter: you just have to laugh at it all.


A little of what you fancy: whether that’s wine, chocolate or crochet.  Anything to keep sane and provide a little distraction.

The great outdoors: perhaps that is why gardening is so popular with older women?  More than ever I crave fresh air and sunshine.

Antidepressants: Sometimes these really do make a difference.

Makeup: the long lasting stuff

Ice packs: the highlight of House of Cards for me was when Claire stuck her head in the freezer as she felt the heat rising.

Clothing: Denim and black hide a multitude of sweaty patches! So do patterns.  Avoid flimsy fabrics and invest in cardigans and anything else you can wriggle out of quickly!

Breathe: Learn to breathe through the hot flushes, and that will stop you panicking. 

There are many people who harp on about the menopause being natural.  So are lots of other horrible things: it doesn’t mean we have to put up with them.

As for me? Well I keep reminding myself that while the menopause is annoying, embarrassing and exhausting, it’s not a disease and it’s not going to kill me, so things could be a lot worse. I’ve managed to shift most of the weight gain through diet and exercise, and some of the other symptoms have lessened over time, apart from the hot flushes. In the meantime, I will just keep adding to my collection of cardigans…

What’s A&E REALLY like?

The media coverage of the A&E crisis meant that I’d begun saying I’d rather die at home than go there. It sounded like my idea of hell.

So it was with much trepidation that I headed to that exact place on Friday morning with a patient.

Imagine my surprise when I arrived to a quiet, clean and half empty room. All was calm, and we were able to sign in straight away. They forgave the lack of a GP letter, and told us we would be seen as soon as possible.

We we’re triaged after about 15 minutes.

Then the wait began.

Would it be 1 hour, or 48? Who knew?

I was barely able to use my phone, so I spent most of the morning observing those around me: the family chatting and laughing in the back row, the young woman talking loudly on her phone and sharing the details of her life with the rest of us too, one person in tears, and another asked to leave and told to visit her GP instead. Visitors wandering in and out of the door, stressed going out, smoky smelling when they returned.

Gradually the seats filled up and you could feel the stress building in the room. Some – just a few – were called through, and did not return.

After three hours I was getting antsy, from lack of information and lack of coffee. Perhaps we’d been forgotten….

I don’t use A&E, so I was unsure of the etiquette. Can you ask where you are in the queue? Or is that just using up valuable staff time?

Just as I was about to try it, the patient’s name was called.

Off we went through the double doors.

First stop was the emergency consultant. The story was told, tests were done. Then more waiting.

Then we met with a specialist in a consulting room. More conversations followed, a plan was prepared, and finally, FINALLY, we were able to pop down to the cafe and get some coffee.

After 8 hours, we were allowed home.

The day brought into sharp focus the fragility of my support system, and I am hugely grateful to everyone who provided practical help and on-line support too.

It also made me wonder about simple changes that could surely make the A&E experience much less stressful.

Like a sandwich trolley or mobile shop that could visit every hour with coffee, tea and healthy food (not like the crap in the vending machines) as well as other useful items like tissues and newspapers.

And why oh why has no one invented an airport style electronic update board – surely everyone could be given a number when they arrive, and then being able to track their place in the queue would alleviate some of the stress? If it works at busy pedestrian crossings, surely it could work in A&E?

Saying all that, the staff actually were as lovely and caring as everyone says, and my opinion of A&E has improved a little. My fear of being taken there has reduced. But then we didn’t head down there on a Saturday night…

 

Jenga

I was afraid it wouldn’t last, and now it looks as though I was right. That carefully constructed tower of support, structure and progress is getting shakier this week as some of the building blocks crumble away. I’m so afraid it will crash down. Each time the tower starts to fall, it’s harder. Each time my resilience cracks further. Each time I wonder how I will make it through the emotional debris. How I will scaffold the remaining blocks so we can make it through another winter with enough shelter from the storms that life throws at us.

Like a Jenga tower, our lives are already full of holes. Plugged as best I can, with the help of family, friends and services. Like most people, we muddle through, coasting one minute and firefighting the next.

One service came through for me today. I asked for help, and the call was returned. A plan was developed and I was kept busy. But best of all, there was an unexpected follow up call to check that all is okay. There are good people out there, and even when it feel like life is hurling Jenga blocks from all sides, there is always hope that the tower will not fall down completely.

 

 

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.

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?