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.

 

Reasons to be cheerful 24.3.17

I’m just going to dive straight in this week, so here goes:

Feeling the fear and doing it anyway

I was published this week.  A recent blog post that I threw together at the breakfast table was seen by a representative from an online paper who asked if I would expand it for publication. Normally I turn down these requests because I hate that kind of publicity and scrutiny of my life and thoughts, but after so many friends have put themselves out there on radio and TV, I felt it was the least I could do. If you want to read it, the link is here.

My long lost love

I’m talking about chocolate. I had a particularly bad day on Monday. and out of the blue I had a craving for my favourite ever bar of chocolate. I’ve not seen it for sale in Ireland, so I just thought I’d check out amazon and there it was. And yesterday this was delivered by post!!!

Cote d'or , chocolate, .png

Friends

In the past few weeks I’ve met friends I haven’t seen for a decade, others I haven’t talked to properly for months, some who I see as often as I can. I met them in coffee shops, running slowly, running fast, on the beach and in the pub. When I feel the urge to hide away, I must remember how good these meet ups were.

Trips out

As the weather improves, my disabled daughter B and I are getting more adventurous in our trips out. We went to the theatre , and spent last weekend trying out many of the activities on offer as part of the St Patrick’s Festival. The variety is good for me, and there’s nothing better than seeing her so happy.

B, disability, St Patrick's Festival, .png

Not a hoarder

I’m not naturally a hoarder, but there are a few things I keep in the press (cupboard) just in case. And the just in case actually happened this week when after many many years I finally got to open this bottle of liquid magic and it cleared the biro marks off B’s lovely pink coat. Result.

Stain devils .png

A new wheelchair for B

Progress is being made: this week she and I got to view some new wheelchairs. They won’t have everything on my wish list, but the team are bending over backwards to try and meet her needs as fully as possible. She’ll also get to pick the colour of the frame, upholstery and wheel guards. I may have to hide the Barbie pink option…

So those are my reasons to be cheerful for this week. Head over to Mummy from the Heart for more.

My Big Love

Apart from my children, obviously. And probably tying with coffee. Yes this is a quick post about the sea. For Valentine’s Day. Because, why not?

valentines-day-sutton-the-sea

And I really do love the sea, even on a grey chill day like today. Actually even more so. It was just me, my thoughts and a flock of squabbling Canada Geese. Exactly what I needed.

sutton-beach-february-2017-sea

I needed a break from the paperwork: a 36 page government disability document, minutes from a recent school meeting, and the biannual disability parking permit application form, which necessitates ordering a new cheque book – paypal etc not accepted – remembering how to print a passport size photo of my disabled daughter B and then dragging her up to the local Garda (police) station and getting poor PC Plod who would much rather be catching criminals to confirm that the photo is a true likeness of her. Catches breath.

sea-spray-sutton

So anyway I was feeling a bit down. Perverse really as things have been going a bit better, and I’m getting a few child free hours for several days every week at the moment. I suppose it’s hit me how tired I actually am, and it being Valentine’s Day I decided a bit of self love was needed. So instead of going on another tough training run, I went for a little jog along the Sutton sea front, and let the tide wash away all those self pitying thoughts. And thought about how much I’m blessed and lucky and loved.

Happy Valentine’s Day!

And then this happened

You know I’m not doing a lot with this blog, right? It’s not registered with Mumsnet or Netmums, I don’t have a Google Plus or Pinterest account for it, and I still haven’t the foggiest about Snapchat or Domain Authority.

Yet someone somewhere has not only been reading this blog, but has also nominated it in a number of categories in the new UK-based BAPS awards for bloggers who write about disability issues (SEND bloggers). Since I’ve gone back to my blogging roots and am writing about topics that matter to me, when I feel like it, and not with an eye on the Tots 100 blogging index, I did not expect or look for recognition. But it’s absolutely wonderful to get it!

baps-awards

With a few notable exceptions* the SEND blogging community is where I find more blogs that are still true to the way the blogging world was when I first joined it – passionate, honest, funny, heartbreaking, campaigning. Blogs that mean something. Here’s a few outstanding examples from the last few weeks – from around the world:

Zen and the Art of Extreme Parenting

I have recently become interested in extreme sports and have been considering amazing feats of daring-do and endurance. Maybe this is an age thing (46 as our local paper was keen to pointlessly share) or maybe it’s a growing awareness that life is short.

I suspect it is more to do with the fact that jumping off the side of a bridge attached to an elastic seems a great deal easier than parenting my three children.

Read more here: https://thewrongkindofsnow.blog/2017/02/07/zen-and-the-art-of-extreme-parenting/

Actually we would rather not do that. It puts a strain on our service.

Back to this whole media promoted, lack of adequate education driven idea that people such as my son are a drain, and a burden. Yes he is undoubtably costly to local authorities and the health service. But his life matters. The minute we start picking apart society in terms of who’s life matters more we start on a slippery downward spiral.

Read more here: http://theaandnatesmam.blogspot.ie/2017/01/actually-we-would-rather-not-do-that-it.html?m=1

Shit Happens

(Promoting the building of Changing Places toilets)

Poo is normal. Let’s help all people poo with dignity!

Read more here: https://ordinaryhopes.com/2017/02/08/10762/

I’d Move Heaven and Earth to Help You

I’d pray to God, 
To any god, 
To every god, 
If I thought it would make a difference. 

Read more here: http://www.littlemamamurphy.co.uk/2017/02/i-move-heaven-and-earth-to-help-you.html?m=1

Reality 2017

(The Bright Side of Life reflects on her son becoming an adult)

What do you do?

When you realise that 2017 is the year that your special needs child is turning 18?

When it hits home that this should be his last year of schooling?

When it dawns on you that this is the year he qualifies for a driver’s licence?

When your heart pangs over the fact that he will not be spreading his wings ~ leaving home ~ getting a girlfriend ~ going to University ~ becoming independent?

What would you do?

Read more here: http://brightsideoflifeasd.blogspot.ie/2017/01/reality-2017.html

Two and a Half Years later

(An update from This is no ordinary kid, now a young adult living in Australia)

He still loves blondes.
He still curls up and has a snuggle with me. 
He still gives the best hugs.
He still has the biggest smile.
He is still VERY LOUD. 

Read more here: http://thisisnoordinarykid.blogspot.ie/2017/01/two-and-half-years-later-our-family.html?m=0

My heart knows

(My friend Lynne writes about grieving the loss of her adult son, who was so like my daughter in many ways)

I know he his gone. My heart feels the pain of it every single second of every single day. My brain on the other hand, likes to pretend that he is in respite or at school and that he will, at some point, be home.

My brain recoils from the thought of never ever seeing him again so I try to not think about that….AT ALL.

Read more here: https://breathethroughitblog.wordpress.com/2017/02/05/my-heart-knows/

Other SEND bloggers that I read regularly include Steph’s Two Girls, Ojo’s World, Transitioning Angels, Faithmummy and Was This In The Plan???

With apologies to everyone I couldn’t include.

So being nominated and being part of such a great community is my reason to be cheerful for this week.

r2bc-badge-2016_zps6ka08a1n

*Such as my fellow Reasons to Be Cheerful bloggers, Liveotherwise and many of the Irish Parenting Bloggers.

Lots and lots of lovely appointments

There may be a bit of sarcasm in that title…

The news:
Nothing sinister was found in my scope, but no real explanation for my symptoms either, so I’m stuck with a very restrictive diet for the moment.

My disabled daughter B finally got her neurology appointment, it means she has a lead hospital consultant now, who is really interested in her, which is good. Not so good is the news that she is having small brief seizures – she actually had one during the consultation. So she’s now on a low dose of medication that will hopefully ensure they don’t develop further.

On Wednesday B got her therapeutic Botox injections that help reduce the stiffness in her legs, which could get progressive without her comprehensive medical and exercise management programme. It was less than a week after an Irish celebrity received cosmetic Botox live on Ireland’s premier TV chat show, and I felt the feature was such a missed opportunity to cover its other uses – and my daughter would probably have loved the attention of live TV, if she could’ve had her treatment at the same time!

Today is the wheelchair assessment and another protest in support of disability rights outside Irish Government Buildings.

And in really good news, I have the following reasons to be cheerful:

A new goal, doing a parkrun with B, inspired by BuggyWalks Ireland.

Possibly joining the no beer for a year campaign, inspired by my blogging friend Kate Gunn in the Irish Independent.

Eldest bought B an unbirthday present of a mermaid blanket for floor time especially when it’s cold. Pink of course, and she looks soooo cute in it…

B has started wanting to share my dinner even when it’s not red (ketchup) or brown (chocolate) culminating in her eating purple coleslaw on Monday!

A hospital visit and finding a free and available parking space easily in the adjacent cul de sac. I think hospital car parking charges are an insult to sick people and I hate paying them so that was a win.

 

And finally, look who was thrilled to be back at the Rainbow Junior Arch Club this week.

b-disability-smiley-rainbow-junior-arch-club
Have a great week, and why not check out more cheerful posts over at Mummy from the Heart.