Falling into the Mental Health Abyss

We’re all told to mind our mental health, so practice self care and mindfulness, to talk about our problems, and pace ourselves. But what happens when that is not enough? What happens when you beg for help and it simply isn’t there?

I am dealing with this situation in relation to a family member right now; it is completely overwhelming and a huge struggle. It’s hard to think clearly about the problems here, let alone define the problems with the system, but others who’ve faced this before do understand and can see clearly, and it was comforting to read these words of wisdom from Jackie (@ja54kki) this morning, and please follow her on twitter.

When we had a major crisis here in the past , the services were basically the police. I remember asking an Educational Psychologist years ago if CAMHS (Child and Adolescent Mental Health Services) provided an emergency service – and the answer was ‘no’. There’s the gap that needs to be filled.

The police can only do so much. Accompany you to A&E if needed, and/or stay until things have calmed. Paramedics can help with injury and arrange emergency medication through an emergency GP. Then, you’re left. No support in place.

I believe there is an emergency social services number for a bed, but how the hell could you place an already stressed and anxious young person in a strange setting with strange people? Where is this “ wraparound” care I used to hear about? More meaningless jargon.

There needs to be support in place to come to your home in an emergency. Very often a fresh face helps to de- escalate. Not rocket science. We need a service like this desperately, we shouldn’t have to use police services in this way. Not fair on them or us. 

What do you think?

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Some hairy reasons to be cheerful!

Once upon a time I wrote a post called ‘My life in bad haircuts’, but it stayed in drafts. Too trivial? Not funny enough? Too much about me? Anyway I remembered it today as I paid a very rare visit to an actual hairdressing salon, where I felt totally pampered especially as I got picked for a free hair treatment that included a massage chair and footrest while my hair was washed! Clearly much has changed since I was last there..

And my hair looks okay too. Also a big change from the life time of embarrassing hairstyles revealed by my collection of old photos – some shown on the right hand side below.

My life in bad hair cuts

It all started well. As a young child everyone loved my thick shiny hair, swung in ponytails or bouncing in plaits. Then puberty happened, and suddenly I was too old for plaits and my hair had turned into this dry, coarse, bushy, uncontrollable mess as I morphed into an ugly version of Kate Bush almost overnight.

I bet the local hairdressers cursed whenever I booked an appointment, knowing they’d send me away looking worse than when I arrived. I scoured the Jackie magazine for tips: I remember pouring eggs and olive oil on my hair, but it just stuck to my head. And the excitement when I first spotted a blue plastic bottle labelled ‘hair conditioner’ in my local Boots. Sadly that didn’t make much difference either.

In my late teens and early twenties, I was far too busy to care, so I wore it short and dyed, which luckily for me was the fashion in the 1980s. It looked fine from the front, but the side view was not so good, due to my unfortunate possession of an egg-shaped head and a large nose.

As a student I was always looking for cut price haircuts, with pretty desperate results at times and there’s nowhere to hide when you get a really bad cut, except under a hat. Which is what I did after one really disastrous cut which left me with these blue and pink feathery bits hanging from my crop. I went straight into the nearest department store and bought a hat and then legged it to the student union hairdresser to get the dangly bits removed!

Then I tried growing my hair long. With layers. And that made me look like an unkept lion (see photo haha).

I got it cut short again after giving birth to eldest, but then I stupidly began flirting with middle-aged lady helmet styles. Not a good style for me either, due to the aforementioned head shape and nose..

I’d almost given up on ever being happy with my hair, when along came the GHD hair straightener. It was finally able to give me what I’d always wanted: shiny flat hair, and I swear it’s one of my most precious possessions.

As my stylist complimented me today, I realised how lucky I am to still have a full head of thick hair with very little grey and the tools to manage it too. Time has stood still for my mane, in the best possible way.

I’ve a big family day coming up soon, hence the visit to the hairdressers. Of course I may still look like an extra from the Walking Dead due to the ongoing crisis, but at least I will have good hair. Hopefully something like this..

Walking Dead but good hair

R2BC at Mummy from the Heart

My new happy place

I climb the stairs slowly, trying to catch my breath. Sometimes it feels like I’m climbing towards the sun as the light usually bathes this upper floor. I pause at the door, but the studio is empty as usual, and a feeling of calm begins to flow gently through my limbs.

No music on this level, just whatever I choose to listen to on my headphones. No one’s watching, so I can do my own thing. Try out routines I’ve seen others do downstairs, practice my cartwheels and handstands, look silly: no one will know.

This is my new gym.

I’ve mentioned it before, but it’s taken a while to cement our relationship.

The weights room in the gym is where the hard work takes place. I take a tour of the machines until I feel completely exhausted, and there’s always other people around so I just do what I know. It’s noisy and hot and sometimes busy.

But few people bother with the studio upstairs.

I love that I can switch off completely. I don’t have to speak to anyone, and no-one is looking for me. There are no piles of dirty clothes or dishes demanding to be cleaned. No stacks of paperwork demanding to be sorted.

You’ll probably remember that my happy place used to be the beach, but not even the sound of the sea can drown out the negative thoughts in my head. Nor do I enjoy running alone right now for similar reasons, and also because I’m afraid of bumping into people and having to smile politely when they ask me how work is going, or tell me how great it is that I get a break while B is in her day programme.

So TG for the gym, and the chance to work it all out in peace.

Finding it, and enjoying it, is my main reason to be cheerful for this week.*

Gym Ballybough StudioR2BC at Mummy from the Heart

*I’m excluding the run at the weekend, which I will include in an entire piece on assisted running, when I get time…

Reasons to be Cheerful 9.11.18

Another reason I love this linky is because I think it actually makes me do cheerful things to make sure I have something to report! And I do…

Christmas Songs

I was giving out on Twitter on November 1st when my disabled daughter’s favourite music channel suddenly began playing non stop Christmas hits. But B is thrilled! I had no idea she would like Christmas songs so much, but as my eldest pointed out, they’re mostly upbeat, tuneful and happy, unlike much of the stuff she sees.

Books

After a break of about 6 months, I am finally reading again: I really enjoyed and learned from a book by an autistic blogger I follow: Aspies Hate Christmas by Amanda J Harrington. And now I’ve begun reading the Killing Eve series by Luke Jennings after watching the TV show

Funrun

I took a chance and entered a family fun run in aid of Brian Tumour Ireland with B, planning to use her running buggy without any arranged help. But people are very good and within second of seeing the two of us plus two buggies someone offered to assist, both before and after the run.

Shrek the Musical

Tickets were bought for this to celebrate a joint birthday for B and my friend’s son and we all went together to the theatre. Sadly the evening did not end well for B, but I really enjoyed the chance to dress up and make myself up too.

A New hat

Another bargain from Lidl that’s warm snug and fleece lined. I love it!

New hat

Going to the pub

I brought B with me to a nearby pub for an hour to have dinner out with friends. She felt very grown up, and all was well at home while we were gone.

Exercise

The more demanding the better, as it gives my stressed head a break. This week I went to my zumba class and for a run with my running group in the Phoenix Park: the autumn colours were stunning.

Phoenix Park

Power chair

B got to try out a powered wheelchair with specially adapted switches and she got the hang of ‘Green means Go’ within seconds. She will need a lot more training before she would be approved for a power chair, but it was a great start and I was very proud of her.

Powerchair training

More reasons to be cheerful over at Mummy from the Heart.

R2BC at Mummy from the Heart 

No place for disabled people

The handles of her wheelchair were touching the door. The footplate was touching the toilet seat. If she could stretch out her arms, she would easily have touched the walls on either side. This was the disabled toilet in our local accident and emergency department.

My daughter wasn’t even the patient. But I am her sole carer, so if I have to go somewhere outside the hours of her day programme, then she usually has to come too.

I had to seize an opportunity and we left the house in a mad rush, just a few random things thrown into bags and hung off the back of the chair. No time for her to use the toilet, I just had to hope that there would be a usable facility available and that we wouldn’t be waiting too long. I *may* have been a bit too optimistic.

Phone calls were supposed to have been made, and we were promised we would be met on arrival. It didn’t happen. And when I saw how many people were waiting to be seen I understood why. There wasn’t an empty chair to be seen. Luckily my daughter was okay – one advantage of bringing your own seat with you everywhere you go.

Once I realised we were in a queue of indeterminate length, my first priority was getting help, and this is where Facebook is a life saver for me. I did text a couple of people first, but they were not available. And yes it was close friends who responded again, but I felt more comfortable putting out a general plea instead of approaching them directly and perhaps making them feel pressurised.

Being stuck in A&E means very little choice of food and drink, especially if you have a disabled daughter who needs a mashed diet. Again my friends were able to bring something suitable for her, and later a bag of (very good) chips for myself and the patient.

But my friends couldn’t really help with B’s toileting needs. I had to sort that out all on my own. I sat on the toilet seat and changed her while she lay half out of her moulded seat – dangerous and uncomfortable for both of us. I’m still amazed I managed it at all.

Later she was crying due to needing to go again, but I was trapped while the patient was getting attention and there was nothing I could do to help her until I got her home.

Really hospitals are no places for severely disabled people, even though the busy staff were friendly and welcoming and made sure we were seen quickly.

This particular hospital is due to get a new Accident and Emergency Department soon, and I really hope that a changing places toilet with a bench and hoist is part of the plan.

My daughter is very healthy right now, but that could change at any time, and she should have the same right to a suitable toilet as everyone else.

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.

Left Outside Alone

It’s Budget Day today in Ireland and for all I care it could be Budget Day in Outer Mongolia. I used to care. I used to march, I used to campaign for better healthcare, universal child benefit, better services for disabled children and adults. And what has happened? Almost nothing. Even though we now have a Minister for people with disabilities, very little has changed, except for the lucky few.

I can no longer bear to listen to most politicians, as they don’t sound genuine any more. I feel ashamed of my former profession – public relations – which was supposed to be about good clear communications, but is now about spin. When a trained politician speaks you cannot trust that anything is true, what they say, how they say it, or even the tone of their voice, because everything has been rehearsed and planned, and that goes for many representatives of organizations and companies too.

On the other hand, I do think that most politicians work extremely hard, and don’t get credit for that. I think many go into politics with high ideals, but lose their way, due to the shiny baubles of power, influence and pay. Just look at our current President, who said he was only going for one term, but is now looking to be re-elected for another seven years. People tell me he’s doing a good job, and I suppose we should at least be thankful that he hasn’t done anything bad or embarrassing.

I’m expecting the Budget to be all about throwing money at as many people and organizations as possible to keep them quiet, then taking it back in increased indirect taxes and charges for services. More complexity to keep accountants, lawyers and public servants in their jobs. There will be no vision, no grand plan, no hope of any real change And certainly nothing significant for disabled people or their carers.  We’re left outside alone.

The problem in Ireland for many people isn’t high taxes or low welfare, it’s the high cost of living and poor services. Money cannot buy the services my children need for example, because they don’t exist!

Respite for B is a good example. As a family in crisis we were given a Case Manager, and one of the items on the agenda was respite. She’s very lucky now to have a personal assistant who brings her on an outing every second Sunday, and it’s been suggested that the respite box has now been ticked and it’s likely that there will be no overnight respite because it is simply not available for adults with her high care needs. Lack of real respite means I haven’t slept properly for years, can’t go away on my own, can’t go to family weddings, comfort sick relatives in person, or support friends in need. At the moment I can’t even go out in the evening because of the problems affecting my youngest. And that’s just one of the many many problems that seem insoluble. Even my eldest daughter is affected, I need her help when she is at home, and she worries about the future and what demands will be placed on her.

You see the State has very little interest in families like mine unless a crisis happens, and then they wring their hands and offer just enough to try and stop things getting worse. We’re just considered dead weight. Outside society, outside the economy. Not of interest. Especially not of interest to Ministers of Finance who are only interested in balancing the books and pleasing their own supporters.

 

 

Reasons to be Cheerful 5.10.18

Once again I’m so thankful to Becky and Michelle for hosting Reasons to be Cheerful, and reminding me to look for them: This week has been mostly about self-care to enable me to keep going as a carer.

#MagicOfOctober – this Instagram challenge from theclotheslines.ie is distracting me from other thoughts as I try to find something to fit each day’s prompt.
Instagram #MagicOfOctober
Bargains – chocolate counts as self-care I think, and what could be better than a bargain 10 cent bar I found in my local Tesco!

Zumba – I know I’ve mentioned Zumba before, but dancing is proven to be good for the soul, mental health, and brain health too, and it’s the one weekly fixture I hate to miss.

Running – a lot of running happened this week. Beginning with an assisted run with B on Saturday at a nearby Parkrun, when we got to test a real running buggy, and I hope to blog about that experience properly soon. On Monday I went for a run along the Royal Canal with a pal, and yesterday I was absolutely delighted with this result from a training run with my Phoenix Park running group.

Strava Phoenix Park Run October 2018

Hope you have a great week xx

 

 

A light for when all other lights go out

It’s been another week of emotional earthquakes, and I don’t know if I’m numb or shattered in the face of it all. But on Monday a little light was thrown into the disaster zone of my life. A mystery parcel arrived from an unknown sender and when I opened it, I found it full of good things and encouraging messages, including this candle.

A light for when all other lights go out

I can’t tell you how much this thoughtful gift means to me. I will be dipping into it for weeks, and one day hopefully I can pass on the favor to someone else in need.

The package was actually sent by Michelle, aka Mummy from the Heart, the founder of the Reasons to be Cheerful linky that I have been doing since 2010. Finding positivity really does help to bring light when all else seems dark.

It also reminds me of the power of those people who brighten up or illuminate our lives in different ways.

My disabled daughter whose smile can light up a room – or even a stage – which she did last Friday when she made her acting debut at Dublin’s Helix Theatre, part of the cast of The Big Musical Mashup. I never thought I’d see my daughter on the stage, so huge thanks to her service for arranging it.

The Big Musical Mash Up

On Wednesday I attended the launch of a report designed to shine a light on some of the darker practices in Irish schools, and I was there to support one of the brave families who came forward to tell their story. Not a cheerful day, but hopefully a good day for the children of Ireland if this report leads to positive changes in the way that disabled children are treated. It can’t come soon enough.

Seclusion and Restraint report

Yesterday I brought a little light into my own life when after an emotionally difficult meeting I took myself off for some grown up time and attended an exhibition. Okay so it was an exhibition of wheelchair accessible vehicles, so still disability related, but everyone I spoke to was positive and constructive about my mad ideas for my next van, so I came home feeling hopeful that maybe one of my dreams can still come true.

R2BC at Mummy from the Heart

Reasons to be cheerful 21.9.18

I removed my rose tinted blogging specs this week to mark the anniversary of the current crisis. To keep it real and tell it like it is. But I don’t want to lose the positivity on here either, so I’ve been scratching around to bring you some reasons to be cheerful this week too….

An unexpected outing

B and I plus a friend planned a flying trip into town to book theatre tickets as a birthday treat, but due to a mix up over the box office opening times we ended up hanging around for a bit of light shopping, dinner out in a local hotel, and watching a race on the water in Dublin’s Docks. B loved it!

Normality

A brief taste of normality when I attended another meeting of the Human Rights Committee at my daughter’s adult service. It’s empowering and encouraging to sit around a table with an inclusive group who are committed to making positive changes in the lives of disabled people.

Mornings

My morning alarm has been moved forwards by 15 minutes to 6am – always my watershed time, and despite a difficult week, I feel much more awake than usual, and I’ve got more done in less time so far today.

I’m also making an effort to appreciate the semblance of normality when my youngest is asleep – like the option to close internal doors.

Swimbags

As I trudged from a nearby housing estate to B’s service for her assisted swim laden down with a rucksack, two pool noodles, her special but awkwardly shaped float and a selection of towels in another plastic bag that had sprouted an inconvenient hole, I decided there had to be a better solution.

Thanks to Google, I found one. Its unfortunate name is Big Mummy Mesh Bag, and while I haven’t had the chance to try it out yet, I can confirm that it easily fits four towels and our swimming gear, so it’s looking good so far.

Birthdays

And finally, it’s my eldest daughter’s birthday tomorrow. She’ll be 26. I’m as shocked as you. But she’s grown into a mature, caring young woman who is determined to change the world for the better. I believe she will and I’m very proud of her 💕

R2BC at Mummy from the Heart