She’s Gone

And just like that, she’s gone. Twenty five years of parenting gone in a flash.

Bags hanging at every angle, squeezing awkwardly through the porch door, keep cup in hand, out into the grey early morning light.

Heading away to begin a new job.

There was planning, shopping, grumps, nerves, anticipation, a hug or two and a final goodbye.

She’s left behind a well-used Tassimo, a huge collection of plastic food containers, bags and bags of old clothes that she no longer wears but cannot bear to throw away just yet, and an empty room. I will have to get used to that.

My first born taught me to become a good enough parent, she taught me that parenting is fun and frustrating by turns, rewarding and exhausting, transforming and fulfilling. I made many mistakes, that she teases me about now, but said nothing about back then.

And of course I’m going to miss her, especially the chats we had every evening when she arrived home from work, bursting to tell me all about her day. But I’m not sad. This is the natural order of things. This is how it’s supposed to go. This is what all those years of parenting were for. She’s launched herself into the world. She’s chosen her big adventure. I know she’s going to pour every ounce of energy and determination into it. I know she will succeed in making her mark.

I love her and I’m proud of her, and also she’s back on Friday for the weekend ….

Megan as a toddler

 

 

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Nostophobia

Nostophobia is the fear of returning home. Okay, okay, so I’ve been self diagnosing again, but without any meaningful help, it really is up to me to try and work out why I’m finding life so difficult. The why is the first stage in tackling the problem.

You see I had time to think today. I was able to leave the house for an extended period – 4 hours – during which time I went to my weekly Zumba class, and then flew drove very fast (but not faster than the speed limit) to Newry to post a parcel that I was unable to post in Dublin. Don’t ask. Apparently lots of and lots of new restrictions have been brought in since I last tried to send a parcel anywhere. And the price has gone stratospheric. The cost of the diesel for the trip was probably funded by the difference in postage between Dublin and Newry, *sigh*.

Anyway, I’m digressing. As usual. I know have a bad habit of trying to explain everything, whether you’re interested or not.

Back to the Nostophobia. I’d never heard of it, but it fits some of the issues that affect me. After an extended period away from home today, I began to feel normal again. Able to function, talk properly, drive safely, and make sensible decisions.

That all changed when I walked in through the front door, and my anxiety levels immediately went off the scale. I always said that this house would be too much for a domestically challenged person like me to manage on my own, and so it has proved. On top of that I am now caring for two young adults with conflicting needs, and coping with the ever mounting pile of household and disability administration. My ‘to do’ list just gets longer and longer, and that’s without even considering the stuff that other people do, like switching utility providers to save money, redecorating or taking up knitting!

When I’m in the house, I’m constantly under pressure and constantly on edge, there’s so much stress here, and within these walls are so many bad memories.

It’s another reason to look for a bungalow, as a fresh start might be just the cure I need. I want to say no to Nostophobia and yes to a home where I can breathe a sigh of relief when I put the key in the door. Where my home is a sanctuary, where I can relax and feel safe.

New house, new start, new me… Sounds good, dontcha think??

 

The Dentist

Not everything happens when it should, especially with the seismic shift to adulthood when you have a daughter with severe disabilities. So much change is happening so fast that some things just slip off the calendar, and you barely notice.

And so it was that B did not go to the dentist for 3 years. In my defence, I used to get a text reminder every year from the local health clinic to make an appointment, and that stopped without warning on her 18th birthday.

My recommendation: send out a letter explaining this, and advising what to do next.

Since I didn’t know what to do next, I consulted Facebook – as you do – but wasn’t particularly happy with the replies, and so the issue of a new dentist for B got put on the long finger. For a long time.

But New Year Resolutions and all that meant I decided to tackle the family health checks. And I remembered bringing B to another health clinic one time for an emergency appointment to get her teeth checked when she was very upset for no apparent reason – and of course she can’t tell me why.

I rang them, and explained the situation.

“No problem,” I was told.

It wasn’t urgent, so I was happy to get an appointment in March at a time that suited – just after B finishes her day programme of activities and before the rush hour begins 😀

She was noisily delighted to see me, no phobia of dentists for my happy daughter!

After a 10 minute mobile disco dancing session in the car (as you do), we drew up outside the clinic, currently in a run down sprawling old building, but not for long, as there is a shiny new replacement about to open next door. But for me it’s not about looks. It’s about accessibility, and how much stress is involved in the appointment.

On those criterion, this clinic scored top marks:

We arrived early, there was free parking, including disabled parking.
It’s wheelchair accessible.
The atmosphere was calm, and there were some free seats.
Reasonably clear instructions for new or occasional visitors.
A very short wait! Which is always good.
A lovely dentist and dental nurse.

I’m in awe of dentists who check my daughter’s teeth, as she normally bites down hard on anything you put in her mouth, including fingers. Yet somehow these trained professionals are able to check her teeth without complaint or upsetting her. I don’t think she actually enjoyed the experience. But she certainly cooperated.

Best of all, her teeth and gums are healthy. Despite her love of cake and chocolate, it seems she needs no dental work at all.

I don’t feel quite such a neglectful mother now!

R2BC at Mummy from the Heart

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.

 

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…