Reasons to be Cheerful 15.6.18

Another busy fortnight is almost over: fewer appointments and less training, but a lot of catching up to do! I’ve reconnected with my morning running group in the Phoenix Park, returned to my Zumba class, and successfully attended two disability-related Annual General Meetings with my disabled daughter B. Plus a physiotherapy appointment for my trapped nerves, and that’s on top of my caring duties.

Most of the really cheerful stuff took place over the two weekends (including a bank holiday here in Ireland on Monday 4th June).

Inclusive Zumba – last Friday night B and I went to a charity Zumba event. It was wheelchair accessible, loud and fabulous. She mostly watched and laughed, but I managed to include her in some of the routines. We’ll definitely be going to more events like this.

A simple trip to town – sometimes I haven’t the energy to deal with all the unknown challenges that B and I may face if I try to bring her to one of the many events held every weekend during the summer. And sometimes the familiar is just as enjoyable for my daughter, so last Sunday we spent a couple of hours wandering around Dublin City Centre and she had a great time..

Bronwen, Dublin City, 2018

Bloom – the previous weekend we had a wonderful day out at one of Ireland’s largest Festivals. You can read about the fun we had here..

Bloom 2018

Parkrun Volunteering – B and I gave out the tokens at the finish line of our local Parkrun recently. I enjoyed it, but B didn’t seem to think it was as entertaining as actually running around the course!

Mini Marathon – B had lunch with her sister while I pounded the streets of Dublin with 30,000 other women on Bank Holiday Sunday. Sadly my training was not sufficient to cope with the oven-like heat, and my finish time was 57.57 for the 10K course, slower than I’d planned. But I had great company at the start: not just my current running buddy, but also my training partner from the 90s, it was lovely to meet her again and discover that we are both still running. You can see us in this 1994 photo of the start line.

Mini Marathon 1994 Irish Times

For more reasons to be cheerful, head over to Lakes Single Mum, and have a good week xx

 

 

 

 

Advertisements

A Rant about Carers Week #RealCarersWeek

Many people say that becoming a carer has made them a better person: I’m sure that can be true, as I saw it within my own extended family.

But I don’t think it’s made me a better person. Instead it’s highlighted my flaws: my lack of patience and tolerance, my self centredness, my incompetence in the face of overwhelming domestic duties and repetitive paperwork. Sometimes I strive to overcome these failings. At other times I rage against the unfairness of it all. I rage at being forced to live a confined life of fear and anxiety. My skills getting rusty, my brain less sharp, my mental health deteriorating.

Sure, I do my best. I do all that self care stuff: I exercise, as I’m sure you’ve noticed! I do social media – often the only opportunity I have to use my communication skills, and writing a successful blog post – or even just a popular tweet – gives me a boost that I badly need. I practice being grateful, I make myself do things that are challenging. I keep going. But it’s not always enough.

It’s not just me either.

There was a Carers Week competition to win a break at a luxury hotel in rural Ireland. Wonderful, you might say. Well deserved (especially if my friend @autieland wins, and I hope she does because she really deserves it as you can read here) but it also rubbed salt into the wounds of those of us who cannot get away from our caring duties, because those we care for have no respite. And even those families that have respite, may not be able to get it when they want or need it.

You see it’s different for everyone: some carers manage to lead relatively normal lives – and I used to be one of them – holding down jobs, perhaps enjoying holidays, a busy social life. Even then they may be facing challenges they don’t talk about. But many of the family carers I know live lives so difficult that the rest of us sometimes wonder how they keep going at all (no choice is often the answer to that question), perhaps due to the number of disabled dependents they care for or the severity of their difficulties; perhaps due to totally inadequate housing, no support, poor health, chronic pain, being housebound for months or years at a time, lack of money, lack of interest, feeling ignored, unappreciated and left behind by the rest of the world. It’s a recipe for despair.

The manicures and other little treats being offered to carers are thoughtful attempts to mark Carers Week, and undoubtedly appreciated by many. But those carers stuck deep in the trenches may not be able to leave their duties to enjoy a little pampering, or they may feel under so much pressure that doing something for themselves becomes just another item on the ‘to do’ list. And a set of pretty painted nails would not last long with the amount of hand washing that many of us have to do each day for hygiene reasons. It’s just not worth it.

There are no easy answers: my disabled daughter has been given a ticket to see Taylor Swift on Saturday, with support and some friends. A great break for me, you might think. Not quite. You see I won’t really be able to relax, as I will be dropping and collecting her, I need to be on standby in case she wants to come home early, and when I do bring her home there is a long bedtime routine that includes hoisting her onto the toilet and her night time stretching exercises that help her to sleep. We are both going to be exhausted! But we’re going to give it a try anyway. Oh and I forgot to mention I will still have one person to care for while she’s out….

What can I do except keep trying to raise awareness? This week I’m joining @Carer49 and tweeting using the hashtag #RealCarersWeek to highlight issues and possible solutions. I hope someone will read them, someone who can take action to improve our lives and the lives of our dependents. It’s hard to hope though, when UK Councils chose Carer’s Week to announce further cuts to vital care services. Does anyone else think that old, sick and disabled people and their carers are actually held in contempt by many people in today’s world? Yes? Not just me then.

As you can see, becoming a carer has not made me a better person, but I feel better after that little rant, and I promise my normal cheerful service will be resumed soon..

The day we walked to Bloom to test out a toilet

The Sanctuary Nurture Garden
The Sanctuary Nurture Garden

It was a sunny bank holiday Monday, we were planning to go to Ireland’s biggest flower, family and food festival, and I hate traffic jams. But we had to go, because I’ve been publicly campaigning for Bloom – as it’s called – to hire a Mobiloo, a mobile changing places toilet for children and adults like my disabled daughter B.

The solution? We walked. Obviously not all the way, but I left my van outside the Park where Bloom is held, and walked the last 1.2 km to the entrance, passing many cars on the way 😀.

After we’d paid in, we were handed a leaflet for Mobiloo, surely a good sign?

But we hadn’t traipsed all this way JUST to use a loo, so we had a look around first.

B associates outings with food, so we headed straight for the Food Village, and she really impressed me as she tried jam on bread, ham and wild Irish tuna. (She even helped me to finish a fancy hot dog at lunchtime.)

Then we both danced to strains of the Kings of Leon, sheltering from the sun under the Food Matters awning while drinking Innocent smoothies.

She loved the buzz in the Food Village, and I swear she was absorbing chocolate and sugar through her pores.

The Muffin Man

By contrast the atmosphere in the display gardens was almost reverential, and since B couldn’t see much apart from other people’s backs, the only one that interested her was the Mamma Mia Garden, because there was music and activity, of course!

Mamma Mia Garden

We also had to stop by the entertainment stage, and caught some fabulous performances by young stars from the Leah Moran Stage School, sustained by coffee and carrot cake from The Coffee Shack , which did not disappoint – as usual.

Leah Moran Stage School

Finally it was toilet time, and we searched for the Mobiloo: and it was such a welcome sight when we found it. Michael and Graham from the Mobiloo Ireland team were so friendly, and the facility is small, neat and totally amazing: a toilet with a changing bed and a ceiling hoist – the vital toileting facilities that are not provided by a standard disabled toilet (just bring your own sling): It’s very simple, but its availability will transform lives, and I look forward to seeing it at other events soon.

Mobiloo at Bloom

Note: I hope this doesn’t read like a review, I wasn’t asked or paid to write it, and I paid to get into Bloom. I wrote it because I believe in the importance of spreading the word about changing places toilets, including Mobiloo, and how they can improve inclusion for disabled children and adults.

 

Reasons to be Cheerful 1.6.18

Once again May was a ridiculously busy and sunny month, and I spent far too much time cooped up in a hot car driving to twelve big appointments for the two young adults I care for, formerly known as my two younger children. All these appointments took place during the hours when B is supposed to be attending her adult day programme, or my ‘time off’ as some people mistakenly describe it! I’ve also been distracted by other issues, but today I’m back with a positivity post 😀.

1. Funding for B’s day programme that she loves has been confirmed for another year. It’s not been made permanent yet, but I will keep hoping.

2. A few firsts – B voted with assistance in the recent referendum, she attended an inclusive Zumba class, and she thoroughly enjoyed being pushed around the inaugural AsIAm 5 kilometre Run for Autism. As you can see.

As I Am 2

3. I baked for the first time in ages, a healthy carrot and banana bread recipe that I clipped from a newspaper. It was delicious.

Banana and Carrot bread

4. As a lone female householder, I regularly get ripped off by the people I pay to do the endless maintenance jobs that are needed to patch up this old house. This week I got fed up with waiting and fixed a badly done job myself. It seems all I needed was a screwdriver and a paintbrush – to be used separately though! It’s good to feel competent occasionally 😍.

And that’s it for another week, hope you have a good one xx

R2BC at Mummy from the Heart