Out of My Comfort Zone

What do you do when you’re feeling anxious and depressed? Perhaps it’s not a problem for you. Perhaps you meditate or exercise or take a bath or just breathe. Me? I tend to curl up on the sofa with Netflix and maybe a glass of wine. But all that does is take my mind off things for a while. The stressful routine of a carers’ life does not work well for someone like me who thrives on variety and new challenges.

And while I can’t easily change my current circumstances, I can make little changes to my daily routine, and this week I managed several big ones!

Smallest first….

I cut my own fringe. I’m always afraid of making a complete mess of it, but no one has noticed so I think it will do until I manage to book an appointment with the hairdresser.

Meeting new people for world mental health day. Always scary. Will I make a complete eejit of myself due to nerves? Will I trip or spill my coffee? In fact I enjoyed myself and it was great to have a brief chat with others who are dealing with crises similar to the one in my own family.

Finally, I went wall climbing at the nearby Awesome Walls with my fabulous running group (on a day off). I must have the climbing gene, as when I was a small girl I climbed trees and rocks with no safety harness and often on my own. Not usually a problem apart from the day I fell into a hollow tree…  And some of my friends will recall that even last summer I seized the opportunity to climb a tree when no one else would. Awesome Walls looked absolutely awesome. And it was. I don’t think it will become another hobby because it’s quite time consuming and lacks variety, but as an occasional treat, bring it on!

Awesome Walls collage October 2018

So those are my three challenging reasons to be cheerful for this week. Check out more at Lakes Single Mum.

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If it works for dead saints, why not for me?

I can remember the years when my pillow really did smile at me. My bedroom was a cool, calm and comfy place. Going to bed meant climbing in, curling up and dropping off. Of course nights with the children usually meant that I was up and down like a Jack in the Box, but I sank into sleep every time my head hit the pillow.

Insomnia is a rare visitor here, like a wasp on a winter’s day. Even during the worst of the menopausal years I mostly slept, but not the recommended eight hours of sleep. It’s partly my own fault. After I left home, there was so much to do and see, so many people to meet, so much to experience and enjoy, that sleep just seemed like a waste of precious time. At College I would be up at 8am studying or swimming, in lectures at 9, manning the Rag Office at lunchtime, working in a bar in the evening, then on to a club followed by curry and home to bed at 4. Then I’d get up at 8 and do it all again…

I *may* have slowed down a bit as I’ve got older. But my children’s night time needs resulted in constant interruptions over the past 25 years anyway. Things were improving though, until this year. The crisis affecting my youngest has had some unpleasant consequences for me (as well as for him obviously, but I don’t write about him on here) and today is the anniversary of when it all began to go wrong. At first I thought the problem would be solved in a few weeks, then by the New Year, but a disastrous Christmas sent everything spiralling downwards, and I now feel trapped and traumatised in a very difficult situation with no good options, and nothing seems to be working.

I’ve been finding it hard to talk, to eat, to function, and also to sleep. The novelty of sleeping in the kitchen has long since worn off, though moving out of my lovely bedroom to sleep downstairs has worked out well for my disabled daughter. As for me, I now know every peculiar sound that fridges make in the middle of the night! And I’m also too accessible, as my sleeping corner is on the way to the shower room. This now means regular night time disturbances.

With these on top of all the other stressors, I ended up with night terrors so bad I would often lie awake from 2am, barely fit to cope the next day. Finally I went to my GP for help in August, and reluctantly went back on meds. A sticking plaster over a wound the system seems powerless to heal.

Something, possibly the bed, also led to trapped nerves in my neck and shoulder. As part of the solution I was told to stop curling up, and to sleep unprotected on my back. Ugh. I feel like a dead saint in a tomb. But if it works for them, I guess I’ll have to make it work for me.

And yes the meds plus the Calm app mean I am now sleeping a little bit better. But this can’t go on. Something has to change. After all, I’m not a saint, and I’m not dead either.

 

 

A butterfly with fragile wings

Progress is a beautiful thing, but in this house it’s fragile and easily damaged. Progress means hours when I feel almost normal again, when my anxiety levels go down, and everyone else in the house perks up too. And yes I’m having to write in riddles and hints, but I did promise that this blog would focus mostly on my disabled daughter B and myself – and not on my other children – so I can’t tell you exactly what’s been happening.

But I can tell you about my other reasons to be cheerful…

My weekend away with B, that I wrote about here.

Kerry

Rain. Only a little bit of rain, but I was so glad to see it, as I was beginning to worry if it would ever return! I know that sounds crazy, but extreme weather events have become the norm even in Ireland, and nothing seems certain any more. Not even rain. (Of course some people were complaining.)

Getting out for the whole day to attend a country funeral to provide support to a couple of friends. It was a risk, but everything at home was okay while I was gone. On the same day I agreed that B could go to the circus after hours without coming home from her day activities first. And that went well too.

I bought a different newspaper at the weekend to begin doing crosswords again. All the challenges this week (to counterbalance all the progress) meant that I am still trying to finish the first one. But it’s a start.

B and I joined the first outing of the Rainbow Junior Arch Club’s Summer Programme last Friday and we had a wonderful time exploring the Airfield Estate and Farm in South Dublin. We visited it once before a couple of years ago, and I wrote about that visit here.

Sculpture Airfield Estate

B and I went house hunting again, and with new bungalows as rare as pink butterflies, I decided to look at new two storey houses with large downstairs toilets and room to install a lift. And we found one. Of course the developer is only interested in selling to first time or cash buyers, but I’m not giving up just yet! At least I’m finding options.

But the butterfly of hope is fragile and elusive, and I’m always afraid it will fly away if something changes. This week though I will try to be cheerful and enjoy the way things are right now.

R2BC at Mummy from the Heart 

The Great Escape

It felt like some crazy dream. A road trip across the country with my severely disabled daughter in 30 degrees of heat, on the day the schools broke up.

For a weekend break.

My first break for seven years.

I didn’t believe it would actually happen until I pulled away with the van stuffed with enough emergency items to see B through the Zombie Apocalypse, never mind two days in Co Kerry. Of course I forgot most of my clothes…

When I got the invitation my instinct was to say thank you, but I just can’t manage it. As usual. But I have wonderfully persistent friends. They had a house with a downstairs room where B and I could sleep, as well as the essential downstairs toilet. They didn’t ask can you go, they asked when can you go .. And then my eldest said of course she could manage everything at home for a couple of days.

And so I found myself on Friday afternoon cruising down the motorway, sunglasses perched on my sweaty nose with the music turned up and B dancing in the back.

Almost five hours later we arrived to a wonderful welcome and food on the table. And so it continued – I barely lifted a finger, except to look after myself and my disabled daughter, and obviously that wasn’t always easy in a strange house not designed with wheelchairs in mind. Apart from that it was everything a break should be: great company, good food, beautiful scenery and glorious sunshine. Poor mobile coverage forced a digital detox, but I didn’t really miss it as there was always someone to talk to and something to do.

Killarney looked stunning in both sunshine and clouds, and there were plenty of wheelchair friendly rambles and places to visit. On the Saturday night we went out to dinner at a hotel overlooking the lake, and there was no hassle including a severely disabled young adult at the table. In fact no fuss was made at all, she was treated the same as every other guest. It was very refreshing.

The break reminded me again that with a little help, it IS possible to have a good life with a severely disabled young adult.

Trip To Killarney Collage June 2018

 

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..

Reasons to be cheerful 20.4.18

I almost stopped writing these posts: I’ve been doing them for about 9 years in different places, and I thought you might be bored with them at this stage. Especially as there is definitely repetition – after all, my life is not exactly exciting any more!  Yet every post still seems to get a good reaction, so here we go again for another week with some daily tidbits…

Friday: B may be grown up, but it’s important to get her out of the wheelchair every day. So floor time is still part of the daily routine. And on Friday I remembered to put her on her tummy, which helps with her head control: I haven’t done it in a long time, and luckily she enjoyed it.

Saturday: Chatting with other parents in the lovely garden of the Carmichael Centre in Dublin while our teenage sons and daughters attend a therapeutic drama session. Best of all, B was happy to join in.

Sunday: Doing the 10K Great Ireland Run in Dublin’s Phoenix Park with my pal Lisa (and clocking up 31,400 steps over the day). It was wet, cold, windy and wonderful!!! A 3 1/2 hour escape from all my worries and I look 10 years younger. Even in a bin liner 😂.

Me collage Candi 17.18
Left hand photo taken at Christmas when I hit rock bottom with stress and exhaustion

On a more serious note, it shows the value of respite, and how difficult life can be without it.

Monday: I discovered a new season of my current favourite TV series: Marvel’s Agents of S.H.I.E.L.D. Please don’t judge me, it’s a little bit of escapism for an hour after B is in bed – and I suspect I may view Coulson as a surrogate father figure 😂

Tuesday: Zumba 💙

Wednesday: The arrival of sunshine meant I got some work done in the garden.

Thursday: I rewarded myself – and the rest of the family – with cake following a painful physiotherapy session. I have to get my shoulder problem fixed as it’s preventing me from doing some of B’s essential daily stretching exercises.

Friday: A morning meeting that promised much. Now to see if it delivers!

Head over to Lakes Single Mum for more reasons to be cheerful.

 

What’s It All For?

Everything is a struggle again. All the juggling, dealing with the on going stress of the problems I’m not writing about on here, trying to put my positive face on in public. The weeks slide by without progress or resolution. I feel my family has been abandoned, and I know so well that I’m not the only one.

And if I can’t write about the only topic that consumes my thoughts, how can I write at all?

I just haven’t got the heart to write yet another cheery post about our Easter outings. I planned to, I really did. I even took the photos and saved them in a little folder on my desktop. All ready to go. I might even give you a sneak peak later.

I was brought up to believe that I could follow my dreams, achieve whatever I wanted if I was determined enough, and of course those beliefs were backed up with the support of a cradle to grave welfare state: you paid into it when you were working, and used the services when you needed them. You earned enough to be able to buy a house, you could get a mortgage because your job was permanent. It may have been pensionable too. The security this gave people of my generation is impossible to overstate. But even for us, it’s starting to falling apart, just as many of us need the services we thought we were funding through our taxes when we were younger.

Perhaps it’s better that my children have learned the hard way that life is mean, life is tough, and you have to make your own luck, that the world is becoming a place where one needy group fights another for scarce resources and publicity. Except that resources are not scarce at all. The world is more wealthy than it’s ever been. But those who have the wealth are reluctant to share it with others.

I wish I could accept my life with grace, as so many others do who are dealing with far more difficult situations, and accept that it may not change, because that’s the way the future looks. But I was always greedy, I always wanted more out of life. More and then MORE again 😀. But it feels as though I’m getting less and less, that I’m trapped in a cage, partly of my own making. Yet people still ask me where I’m going on my holidays, even though I haven’t had a foreign holiday since 1996 (not a typo). People still ask me about respite, even though my disabled daughter has had only a handful of days over the years and none since 2015. My other qualifying child has never had respite. People still ask me how work is going, even though I lost the job I loved during the Economic Crash in 2008. People assume I get lots of support, yet the last time I felt that someone was really sharing the load was summer 2011 during a weekend at my Dad’s house before he succumbed to his final illness. Life is about to get trickier too, as my eldest and only non-disabled child begins a new job away in two weeks, though she may be home at weekends.

So I am finding everything very difficult once again, but I didn’t want this blog to become a moanfest. There are too many mixed messages on mental health for me to feel comfortable sharing my worries all the time:

Avoid negativity, they say: and I don’t want you to feel you have to avoid my blog.

Cut negative people out of your life, they say: yet I would hate for my friends to feel they had to do that to me.

Tell someone your problems, they say: yet even counsellors need counselling to cope with what they hear from clients, so who would want to burden their friends?

I heard a desperate woman on the radio in January who was facing repossession of her home and she told no one of her plight, “because everyone has their problems”.

Yet we’re told it’s good to talk…

Some people manage to talk about their problems in a way that makes you feel sympathetic, makes you feel privileged that they chose you as a confidante. Some don’t: I’ve called it emotional dumping, when someone pours out all their problems to you, and they feel better afterwards, but leave you feeling stressed and exhausted. Though airing my problems usually makes me feel worse. Except on here, for reasons I don’t understand.

The Government tells us to eat healthily, take exercise, switch off our phones etc as though our mental health is entirely within our control, and basically our responsibility. In fact many people struggle with mental health issues as a result of Government policy. Medication and counselling are pushed on people, yet they just deal with the symptoms, not the cause, which is often the lack of state services and support!

All I can do is keep going, doing lots of self care, even when I don’t feel like it, even when it feels like just one more thing on the desperately long ‘to do’ list. Even when I wonder why I am bothering at all.

So what’s it all for? I’m lucky that my disabled daughter’s zest for life, and love for those who love her give me a reasons to drag my weary ass out of bed every day. Because I am tired, physically, mentally and emotionally. But you’d keep going too, wouldn’t you, for this?

Bronwen in Farmleigh 2018

 

 

Yesterday

All my troubles…
…Seemed a bit more manageable.

Yesterday was a good day for me, with several reasons to be cheerful:

Baking

A request was made for a homemade chocolate cake, and it was agreed that my reliable 5 minute recipe would do. The result? Three happy young adults, and a bit of stress free baking therapy for me.

Running

Entries opened for the Dublin Women’s 10 kilometre Mini Marathon yesterday, and I got my place, and it’s in the runner’s section at the front –  I earned an automatic qualification thanks to last year’s time. So no pressure, and I now have something to look forward to, as last year’s Mini Marathon was definitely one of the best days of 2017 for me. There’s something very special about being part of such a massive event that involves running around the streets of Dublin with 40,000 other women.

The start line, Dublin Womens Mini Marathon 2017
The start of the 2017 Mini Marathon

Parading

Due to the family crisis, I forgot all about St Patrick’s Day and the need to organise something fun for B to do, but yesterday the lovely people in Snowflakes Autism Support once again invited her (and me) to march with them in a local parade. You might remember these photos that show just how much she loves St Patrick’s Day, and taking part seems to be even better than watching…

Disability Rights

Yesterday was an historic day for the disability community in Ireland. After TEN LONG YEARS Dáil Éireann (the Irish Parliament) finally voted to ratify the UN Convention on the Rights of People with Disabilities. Every other EU country has already done this, and I am one of many people who protested with weary regularity to make this happen. I won’t be stopping now either, as this is just the start, next we have to ensure that the Government acts on the convention, and actually improves the lives of disabled people in Ireland. But it was a good start.

So yesterday showed what even one good day can do for my mood: 24 hours later and I can still feel the positive effects. You could call it a highover perhaps… Let’s hope it’s the first of many 😀

Written yesterday…Finished today…

R2BC at Mummy from the Heart

 

Battling anxiety by scaring myself silly! #timetotalk

It’s no secret that the ongoing family crisis here has had a negative effect on my mental heath. I’ve never suffered with anxiety like this before. The effects have been frightening, and that resulted in a negative feedback loop where the fear made me more anxious. I retreated, avoided people – even friends – avoided situations and activities that suddenly seemed too difficult. From talking to friends, some of this may be age related too – my peers are experiencing similar issues – a loss of confidence, feeling anxious about everyday chores and activities, afraid of doing something stupid, of others seeing it, of feeling stupid yourself and therefore wanting to avoid anything that might be challenging.

But if you know me at all, you’ll also know that I hate feeling fearful, I hate feeling weak, I hate feeling vulnerable, so I searched around my head for strategies that would improve things. And I remembered the advice that facing your fears – in a gentle way – should make it easier to cope with them.

So for the past week, I’ve been making a real effort to get out of my comfort zone.

‘Me’ time was prescribed for the weekend, and I was lucky enough to get a sitter for Sunday morning, so I went for coffee on my own and then to the gym. With no worries about having to rush home after training, I tackled the showers. It’s only taken me two years… But in all fairness, communal changing rooms are very intimidating for women of a certain age, especially those who don’t have time to do all the grooming and tanning and exercise that’s expected! And I had stupid little worries about whether the lock I had would work on the locker, would the key be safe while I showered (I had visions of it being washed away…). All my fears were misplaced: no one  noticed me at all and my plan to manage the locker/shower process worked perfectly.

Then there was another incident in the saga of the fridge, that I’ve mentioned more than once over the years! On pulling it out one day, I was horrified to see dust almost filling the vents in the back. Dangerous, I thought. Luckily Google came to rescue and told me that I needed to vacuum the fridge coils. I’d never heard this before, and it took me a few days to tackle it, especially as you have to remove the back cover of the fridge which says ‘Technicians Only’ in very large letters. But I did, and nothing blew up or went on fire either!

Cutting and taking up winter leggings for B – because her legs are a non standard length and only summer leggings come in capri length. (Her clothing issues are worthy of a whole blog post in themselves –  I promise to write it one day 😀). I was afraid I’d ruin them of course, but I didn’t, and she’s wearing them today. Result.

Back in the gym again, and there were two young men demonstrating their handstand skills. It was impressive, and you couldn’t miss the demonstration either. And you know I’m competitive, right? And that I used to do school gymnastics as a child? And that I can resist everything except temptation? So when I’d finished my essential training (it is essential, it keeps me strong, and keeps my back healthy, so I can carry on caring) I got my breath back and then attempted a handstand, and then two more. I was only able to hold them for a couple of seconds, but still! The guy behind the desk winked at me on the way out ha ha #55notdeadyet.

Finally, I have agreed to go for talking therapy, to keep others happy, but very reluctantly. Here’s why:

It eats into the free time I don’t have.
It requires me to talk about all the crazy stuff that has happened in my life. Again. And I find that traumatic.

So you could say I’m scared of counselling too, so that’s another reason to do it. And because today, February 1st, is #timetotalk day, I really should make the effort to talk about mental health, and I hope you do too.

Time to talk

Because scaring myself has made me feel better, this will also be my reasons to be cheerful post for this week: read more over at Lakes Single Mum.

 

 

A Family Affair at the Mini Marathon

How to explain the Mini Marathon and why it’s so loved by so many women? After all, isn’t it just a 10K race that takes place every June Bank Holiday weekend through the streets of Dublin?

Yet it’s so much more than that.

For me the highlight is the countdown to the start, with the nervous smiles among the runners, the anticipation, the watches being checked, water bottles discarded, goosebumps from the strains of Sisters, are doing it for themselves, and knowing there’s 30,000 more women at your back.

The Start Line, Mini Marathon 2017,

You feel like you’re part of something.

And you are.

It’s the biggest women only race in the world and one of the biggest charity fundraisers in the Irish calendar.

I’ve probably told you before that I ran it many times in the past, until life got too complicated! And that my first attempt was in 1992 when I was 5 months pregnant with my eldest. This week she walked it pushing her disabled sister, with the help of a couple of friends. And despite the rain that set in as I finished and they reached half way, we all loved the experience.

For me, almost everything went right. I wasn’t feeling well, but with the help of a really fast course, I crossed the line in a very satisfying 57 minutes and 15 seconds. Which means I qualify to enter as a runner again next year. And if I can keep that up, I will do it every year (once I have someone to mind my disabled daughter – or push her round for me).

And having something special to look forward to every June from now on is my  reason to be cheerful for this week. Head over to Lakes Single Mum for more.