Fat middle aged mum runs for her life

Okay so maybe ‘slightly overweight’ middle aged mum would be more accurate, but fat makes a better headline, right? Anyway, I’m 11 stone and a size 14 which is huuuuuuge by fashion industry standards and I have fat in places where no fat should be. Which is why I will never wear a bikini again!

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This is the fatter me recently, running in the Phoenix Park in Dublin. In the rain.

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London Marathon 1987, one of the best days of my life!

This was me in my mid twenties on a very proud day. But my running career had an inauspicious start.

Three years earlier I could’ve been voted employee least likely likely to run for a bus. My colleagues mocked my attempts at jogging, and when I announced my intention to run a half marathon they sponsored me large amounts per mile… But I got the last laugh, and a local charity did extremely well when I finished in just over two hours.

And I just kept going, joining clubs, running races, taking breaks and beginning again. Right now I’m training really hard for the 10K Great Ireland Run in April and hoping to break the hour — a big change from the days when I was trying to break 45 minutes! But I’m nearly there…

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So while I’ve been running on and off for a long time, others like Sinéad at Shinners and the Brood are just starting, with the excellent couch to 5K programme. Good luck to everyone who is beginning a journey to fitness in 2017, and here are some random running tips from a veteran…

All you need is a pair of trainers and a bit of determination to get started.

But you’ll soon want to spend some money. For comfort and to avoid injury you should invest in a good pair of running shoes bought from a proper running shop where advice is available. Plus a supportive sports bra (unless you’re a man, I guess!). And there’s lots of amazing, gorgeous and useful running gear now, with quick dry fabrics and even bum bags with water bottle holders!

Running on your own is hard to do all the time. I would definitely recommend joining a running group or club. You can find them via social media, sites such as boards.ie (Ireland) or apps like MeetUp.

A goal will keep you focused and keep you going. Whether that’s a regular 5K #Parkrun  or a marathon, it will help you leave the house on those days when you’d much rather slump on the couch with a tub of Ben & Jerry’s.

Variety also helps avoid boredom: take different routes, take photos when you need to stop. Try longer slower runs, or shorter faster ones. Try different locations and times of the day, running in sand or up hills will test you, but the scenery will be great, and there’s something special about running in the city early in the morning when it’s quiet and fresh.

Races are fun to test yourself and to experience the feeling of running with a crowd, getting a medal, a T shirt, and maybe raising funds for a good cause.

Struggling to find a babysitter? Run with a buggy. They are welcome at some parkruns and bigger races too. I slowly ran the Great Pink Run 5K course last year pushing my adult disabled daughter.

Running apps, love them or hate them, they can be motivational. Most people I know use Runkeeper.

Need a break from running? Take it. Your legs will remember the training you’ve done and it will be easier going back than it was starting out.

Running may not feel easy at first, but if you push through, you should get to a point where you feel comfortable running at a pace that’s right for you. You’ll enjoy the feeling of moving, of meeting other runners, of looking at the world around you, and the fresh air. Our bodies were made to run!

As for me, I’m running for my life. To keep me alive, to give me more energy for my children, to help me ditch medication, and to battle anxiety and depression, the life partners of many family carers, including me.

So to all the middle aged women out there who say they cannot run, I have this message: Yes. We. Can.

The Minister for Health is right to say that family carers are the backbone

Irish Health Minister Simon Harris TD reportedly said that family carers are the backbone of carers at a conference for people with acquired brain injury in Dublin today.

But you know what?

He’s right.

And I’ll tell you why.

Because the backbone is hidden away out of sight and out of mind.

No-one thinks about their backbone.

No-one pays it much attention.

Most people take it for granted.

They do little to support it.

They do things that will weaken it.

They do things that may damage it.

But they expect their backbone to soldier on regardless.

They only notice it when it hurts or breaks.

Then there’s a crisis, cries for help, and they wish they’d looked after their backbone all along.

And it seems that every generation is destined to make the same mistake, with their backbone and with family carers who provide such a vital service to society even though most people forget about them as they go about their daily lives.

Perhaps the Minister for Health will now show that he understands the importance of looking after society’s backbone. Let’s hope so.

I also want to dedicate this post to the memory of Lisa Williams who was a friend of many of my friends and whose death was reported this week. Rest in peace Lisa.

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?

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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.

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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.

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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!

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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.

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

Alcohol is the new Tobacco

I like alcohol, I like the taste of it (with a few exceptions like Pernod), I like the fieryness of red wine, the richness of dark rum, the yumminess of Bailey’s Irish Cream, the refreshing taste of lager on a hot day. I like the way it makes me feel relaxed, confident, sociable, my best self.

But alcohol no longer likes me.

So like the cigarettes, it has to go.

It also has to go because I think that drinking will soon be socially unacceptable and impossible to do and live a normal life. So I want to get ahead of the game.

I can see the signs: instead of #winetime and #gin on my twitter feed, I’m being followed by Team Sober UK. There’s article after article about how alcohol is responsible for every human misery known, from cancer to domestic violence to road deaths. This is how the public were persuaded to accept the smoking bans, and soon I predict that drinking alcohol will be viewed in the same way.

In 2017 drinking alcohol is frowned upon during pregnancy, when driving, at lunch time, when out walking in some countries, at work, and as a parent of small children who may need go to hospital. Meanwhile cashless welfare cards that prevent expenditure on alcohol have been introduced in Australia and working in the gig economy or on a zero hours contract must be impossible if you drink.

I’m not saying this is a bad thing, When I was young I thought that drinking was cool and fun, now I see the effects on some of my contemporaries and the idols of my youth and it’s not pretty.

At the same time, sobriety is becoming fashionable, though I’m finding much of the publicity material a bit too evangelical about the wonderful benefits of being free from alcohol – I’m not expecting my life to be transformed, though I am running faster!

Next week the Irish Government will pass a new law that will disqualify first time drink drivers from driving.

As a carer, I know this means that realistically I will need to be completely sober at all times in the future, unless my disabled daughter actually gets overnight respite.

I need to be able to drive, so this new law will mean curtains to the bottle for me. The future is sober. It may be more boring and less sociable, but life changes, we have to adapt and get used to it.

Society coped with the smoking ban, it will cope with this too.

 

Why carers don’t go out

I need to emotionally dump some stuff, so I’m doing it here to spare those around me. You have been warned!

A date for your diary went the message. Ooh what’s that I wondered. And it looked good: A generous invitation to an evening out to meet a number of other high profile people in the special needs world. Several weeks notice. Plenty of time to plan says you.

But it’s not as simple as that. Like many carers, I don’t go out much any more.

Obviously we all go out occasionally. I try to leave the house every day. But going out at night? That’s an altogether bigger ask.

This is real life when you’re a carer.

I’ve changed a lot in the past eleven years since I became a lone parent to three children, two with additional needs. In 2006 I was still full of pre-menopausal energy, I had a great support system for my disabled daughter, and had no need to spend my days battling bureaucracy and an uncooperative hoist. Since then the stresses and strains of home life have increased, my health has deteriorated, I’m permanently tired and the thought of trying to do something extra rarely seems worth it: the evenings are a busy time, and if I do go out there will extra caring work to do before I leave and after I get home too.

Yet this party girl used to love going out. Especially to pubs. I worked in them, watched telly in them, socialised, ate, drank and danced in them. But these days I only the pass through the door of a pub a few times a year. I’ve no interest any more. My middle-aged ears cannot hear what my friends are saying over the hubbub around us, I’m mostly off alcohol and I can’t stomach soft drinks either. Being sociable is hard too. It could be a life stage, but living in a special needs bubble means my life is boring compared to my peers. I no longer have funny stories, or interesting tales to tell, I don’t have time to sit and watch TV, so I can’t discuss that latest show you love: I have no confidence that I can be sociable at all.

And that’s just while I’m there. The logistics of organising a special needs babysitter, and making sure the time suits so that no hoisting will be required while I’m out – unless I’ve a second person available. Getting ready, getting dressed up, doing make up, hair, organising food, drinks, clearing everything up afterwards, dealing with teens and young adults who won’t go to bed, or won’t sleep without my presence or ability to diagnose what the problem is. The thought of it all is overwhelming.

More and more it feels like normal life is receding, disappearing over the horizon, out of reach. Dreams and ambitions are beginning to seem impossible now. A recent article about an 84 year old woman who has had to go public about her dementia to beg for residential care for her 50 year old daughter reminded me that I could be living this life for another 30 years too, so I’d better conserve my energy!

And sometimes the occasional night out feels worse than none at all because it’s a reminder of what I’m missing.

And then there’s the guilt.

I had one night away from the kids in 2010, and I had to be home for 8am the next morning after 2 hours sleep to relieve the babysitter. It was a bucket list night – I finally got to go to a ball, and I had a ball too. But planning the event was exhausting and so was the catch up and recovery and my children were a lot easier to please (and lift) in those far off days.

Now I do almost nothing that does not involve them, or benefit them in some way. But that can be fun too. Going to the cinema with one of more or my children doesn’t make me feel guilty at all. Unless I eat a really large portion of Ben & Jerry’s. Or bringing B to a music festival: that’s something we can both enjoy.

Other activities I can justify 😉

Keeping fit, so I’ll be alive for longer and have more energy for the children.

Meeting friends for coffee during school hours keeps me sane, and we swap useful information too.

Blogging, for when I can’t meet friends.

Watching a show on Netflix before bedtime to switch off my brain so I can sleep.

Facetweeting, because it’s where I’ve learned almost everything I need to know to help my children.

But propping up a bar with a G&T? I can’t justify that. At least hardly ever.

And the generous invitation to a night out? I didn’t go.

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A new hope

Corners have been turned for all three of my children this week: for my disabled daughter B, the news came that the local disability manager has agreed that home nursing will be organised in the event of an emergency medical crisis affecting me. It just shows that screaming and shouting on social media does bring results, but it shouldn’t have to be that way. As for the other two? Well their news is mostly theirs to share at this stage..

But here’s some of the other things that made me happy this week:

All three of my children arriving home each day happy and chatty. Love the way my eldest spills all the news when she gets in, I feel privileged that she still lives at home and wants to share all the highlights of her day with me.

Happy Mum and happy daughter photos from last Saturday.

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Two Instagram challenges for February, perfect as I’m just finishing up an on-line mindfulness course from Happy Healthy Minds, so I need another challenge. No images I’m really proud of so far, but it’s keeping me entertained and distracting my mind from disability issues.

Irish radio: It’s always a little bit less serious than in other countries and sometimes it’s not serious at all. Like this interview with Batman. Listen if you have time, you won’t regret it!

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The carpets are once again their original colour thanks to an exhausting 24 hours collecting a giant carpet cleaner and then lugging it, shampoo and buckets of water up and down the stairs. Glad to have that job done though.

And because the week ended well, I felt cheerful enough to do some baking on Friday to mark carrot cake day – in a healthy way of course – and these were the results. #notprettybuttasty

carrot-cakes

Have a great week and head over to Lakes Single Mum for more Reasons to be Cheerful.

 

If not me, then who?

If I do not say my daughter is severely disabled, how will anyone understand that she needs much more than a wheelchair to live her life? Is complex disabilities a better word, or just a different one that fewer people understand.

If I do not express my individual needs as a carer, who will take over when I burn out? Giving rights to disabled people should not mean no rights for carers. We are people too. We are not heroic, that label allows society to pat us on the head for doing great work and send us on our way with no rights and no help, while allowing others to sneer at our role.

If I do not question the sweeping statements about disability that are made without thought for how my daughter’s life could be affected, then who will?

If I don’t question the hurtful, unhelpful stereotypes of both disabled people and their carers, then who will?

If I don’t ask that we all work together, and stop fighting, then who will?

If I do not remind the world that 20 years of hard work by me and a huge professional team have failed to teach my daughter to speak – or communicate with words in other ways – then who will listen when I say I have to be her voice?

If I do not stand up to those who describe my daughter as a burden, or those who airbrush away her disabilities, then who will?

If I refuse to be silenced, though how much easier it would be to say nothing, do nothing, stop bringing my daughter to sit alongside disability activists at protests, stay off social media, stop trying to make a difference, who will stand up for her and her needs?

If not me, then who?

The Hub

It’s the word that got me first. What does ‘hub’ conjure up to you? I keep thinking of a hive of insects, which is obviously wrong. Or the hub cap covering a car wheel, often dirty and broken. Or the centre of a bicycle wheel with spokes heading out in all directions. Actually I think that last one is probably what is meant by a hub, at least in terms of the Hubs that are being set up for disabled adults under New Directions, to provide a base for accessing services in the community. However the name does not give me a warm fuzzy feeling, or suggest somewhere welcoming. At least not to me.

But I’m always willing to be converted, so I happily accepted an invitation to visit a Hub in Drogheda, about a 40 minute drive north of Dublin. Obviously I brought my disabled daughter B with me, so I could see what she thought, and whether it would suit her.

the-hub-drogheda

This Hub is a revamped building in the grounds of a Rugby Club in Drogheda, it was set up as a partnership between parent group Autism Support Louth&Meath, the Irish Health Service (HSE ) and non-profit Praxis, and parents sit on the steering group. It provides a service for 15 adults, all bar one have autism. and most have moderate intellectual disabilities. The adults spend 75 per cent of their time in the community and go out in groups or on their own – everyone has a personalised programme of activities. There are also group activities like yoga and music and the adults can choose to take part or not. There’s even an allotment with chickens!

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Specific life skills are taught, like how to use a pedestrian crossing safely. Specialists come in to the centre to meet individual needs, such as occupational therapy. There are a number of different rooms for different activities, such as this lovely relaxation room.

relaxation-room

The Hub was wheelchair accessible but there were no changing place toilets for those who need a hoist for toileting or changing. Nor was there a medical team on site.

The atmosphere was quiet, friendly and purposeful, perhaps a bit too quiet for my daughter, who was a bit withdrawn during the visit. The adults at the centre all seemed content and occupied, which was great to see.

Perhaps there will be different kinds of hubs, maybe some will be more lively, and with a wider range of facilities, who knows? My daughter follows a very similar programme, and spends a lot of time in the community, but it’s not ‘her’ community, it’s a couple of miles away, and under New Directions, she’s supposed to be closer to home. Also her current service is on a campus – which means it has lots of specialist facilities that are not available in the community – but campuses “do not comply with the criteria.” This makes me sad.

I can see how hubs could offer a much better lifestyle for those with autism and mild to moderate disabilities, who can easily enjoy and take part in community activities.

But I’m not convinced yet that hubs could work better for adults with multiple disabilities and complex medical needs. My daughter seemed to agree, she was interested, but not excited.

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Do you mind?

Do you mind that this is an old style blog? An on-line diary that mixes angry rants with reasons to be cheerful.

Do you mind that it’s mostly about disability and carers? Because that’s my life now.

Do you mind that I don’t have time for polished writing any more? Because blogging now feels like a self indulgence since I can no longer justify it as honing my writing skills or learning about social media and coding.

They say that those who matter, don’t mind. I hope that’s true, because no-one has to read any of this stuff if they don’t want to.

But if you do want to read on, here are this week’s reasons to be cheerful

Finally getting a new coat for B. Not as easy as it sounds. Black doesn’t suit her, puffy jackets don’t work, other coats are too big, too stiff, to hard to get her arms into, or the sleeves won’t roll up so her hands are free. This one is perfect, and she seems to like it too!

b-pink-coat-new-look

Getting over my current fear of being too boring and miserable and returning to my running group. AND completing 5K in 30 minutes – a great start to my aim of running 10K in under 60 minutes in the Great Ireland Run in April.

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Totally enjoying a nostalgic rewatch of my favourite ever TV series Blake’s 7 on YouTube (but don’t tell Netflix!).

Depression at President Trump’s inauguration being eclipsed by joy at the resistance movement and the wonderful women’s march.

A little four hour holiday on Monday, with a trip to the gym, coffee with Jazzyville and a tiny bit of shopping too. And I bought something for myself that I didn’t absolutely need. It felt great.

Hope you have a good week, and head over to Mummy from the Heart for more reasons to be cheerful.
R2BC at Mummy from the Heart