Wheelchairs and waiting

If you didn’t see the post last week about Jono you can read it here. There’s not really any news on that front. A few councillors have been in touch, just a few (Chris MacManus, Marie Casserly and Dara Mulvey) this is quite disappointing considering how many were tagged and contacted. The occupational therapist phoned me on Thursday and said she see what she can do, the referral finally went in – surprise that after I kicked off about it.

Anyway Jono really needed to get out of the house so we headed to Ennskillen on Friday, they have a fantastic Shopmobilty scheme where anyone can avail of the use of a wheelchair/scooter. Unfortunately on the day we went up the scooters weren’t available but we got to borrow a wheelchair. I can’t begin to tell you how much easier life was. Jono was able to look at the things he wanted to look at. I was able to relax because I knew he was safe in the chair.

We had a fantastic, much needed, day out. Although I now realise how difficult life can be for wheelchair users. We saw cars parked on wheelchair ramps and as for cobble stones they might look pretty but for someone with a bad back in a wheelchair they are a nightmare. On the positive side the people of Enniskillen are fantastic. Two men offered to push Jono up the hills – there are a lot of hills in Ennskillen. Downhill is almost worse as I found out when we went whizzing off and Jono narrowly avoided being tipped out on numerous occasions. It’s also hard on the old hands pushing the chair (and hard on my back too). But all in all it was brilliant, thank you Shopmobility and Enniskillen for being so wonderful. This is available to everyone and they hire them out for longer periods too. Asda have their own little electric vehicles complete with a basket on the front. Jono didn’t try these because he was exhausted by the time we got there but it’s handy to know.

As for me. I’m now kind of scared to sleep, I know it’s the whole anxiety thing. I’m falling asleep but only for about an hour and then wide awake. I’m exhausted though. I fell asleep on top of the washing pile yesterday. I resorted to a sleeping tablet midweek but I hate the taste they have. I also don’t like how my body feels asleep but my mind is still racing. I’ll get there though.

The week has also been a stark reminder, again, of who my friends are. I can’t help but feel a bit sad, the coffee mornings which I thought might be a turning point with me making friends haven’t changed things at all. I know people are busy, have their own lives and their own stuff going on but sometimes it’s nice just to say hello, check if someone is OK. Especially when you see these busy people all over Social Media commenting on various things. Anyway I’m going to wind my neck in and drown in my bubble of exhaustion, happy Sunday.

 

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No Country for the Disabled

Many of you know that my son Jono has scoliosis and kyphosis (and Asperger’s Syndrome). Many of you also know that he is now in such pain he can’t walk far or stand unaided for long periods of time. I asked the GP to refer him to Occupational Therapy Services. Over two months have passed and we’ve heard nothing so I phoned the O.T office in Markeivicz House who told me there is no record of a referral. I contacted the GP surgery and they said they assumed he was referred but they can’t find a record of him being referred.

So it’s looking like he hasn’t been referred at all. Markievicz House tell me I can refer him myself but he has to go to the back of the waiting list. The last couple of months count for nothing because there’s no record of it. I didn’t even know you could refer someone yourself.

I went into the Citizens Information office three weeks ago and they said there was nothing they could do and I should contact my local TD. I’ve since found out there is a disability advocacy officer in the Citizens Information Centre. This person is away this week so I phoned the National Advocacy Service for People with Disabilities who tell me there is a 28 working day waiting list to be seen in Sligo….but they aren’t sure if there’s anything they can do anyway. I have to admit I got upset, I don’t usually cry but I did today. It was then suggested that perhaps I should go for counselling or phoned the Samaritans.

If I wasn’t angry enough about this whole situation I’m now bloody fuming about it. How dare someone suggest I need counselling. Am I not allowed to get upset when I see my son in so much pain?
Why wasn’t the referral sent to the OT?
Why does Jono go to back of the list even if the GP tells the dept. it was their mistake a referral wasn’t done.
Why is everything a bloody battle?

Jono was born in Ireland, one of the reasons we moved to Ireland was to have our family in a place that would offer them a better quality of life. We had no idea Jono would become disabled and we wouldn’t have him any other way but it’s awful seeing your son suffering and knowing there isn’t a thing you can do to help him. Yes I could buy him a very basic wheelchair but we tried one out and it isn’t really suitable. I’m not going down the crowdfunding route, I can’t deal with the negativity to be honest and I also don’t see why members of the public should bail out the HSE or mop of the mistakes of people not doing their jobs.

This afternoon Jono is upset because we are upset and angry and he can’t understand why, once again, he’s waiting. Much of his life has been spent on one waiting list or another. The 8 years suffering under the team in Sligo Hospital being told to take 2 panadol and lie down until we realised they couldn’t carry out the surgery anyway. The Crumlin Waiting list for the spinal rod fusion which finally happened in 2009, a good few years respite until the curve start again above the rods. On the waiting list for surgery again since April 2017. Waiting since January for pain management injections because somehow although he was being seen regularly and they really made a difference he’s now on the waiting list again.

Without our fantastic physio who told us this week that he believes another surgery will relieve the pain we would be lost. It seems that no one else in the health service gives a damn.

This is really no country for the disabled. Thanks for reading.

 

Sleep and simmering

Thanks so much for the lovely comments especially to my Facebook tribe. I can always rely on someone when I’m on a middle of the night rant. I managed to sleep last night, I feel like I failed because I took a tablet. I’m now suffering this morning – the rotten taste in my mouth and my head moving ten minutes after it was meant too.

I’m home today so I can be dozy in the comfort of my own place. A few things have come up over the last few days. There was almost a very long, angry, blog post yesterday but Andy is a very wise person and advised me to find out the full story before I start complaining. He’s very right so that topic is on hold for now, it doesn’t stop me fuming about it but I tell you something when I find out who was behind this particular situation there’ll be noise made. At the moment I’m simmering quietly…..

When you feel so tired but you can’t sleep

Who’d have thought that I’d ever be quoting Coldplay lyrics! Jaysus I must be bad.

I got my usual 45 minutes of sleep and here I am wide awake. I did stop bringing the phone upstairs but I went downstairs to make a chamomile tea and decided to write a blog. Although I don’t really have much to say.

I’ve been trying to sketch something but it’s not working out. In my head I think I can draw but when I pick up a pencil I realise I can’t.

There are a lot of things banging around the house tonight. Random sounds and it’s not the family because there ended up being an impromptu gathering around the kettle and no one knows what the sounds are. A lightbulb has blown too – at times like this I’m convinced someone is trying to tell me something but I have an overactive imagination.

Just as well I did wake up as Jono’s dressing fell off his finger and he started picking at it so I’ve patched it up again now.

I’m hoping sleep pays a visit soon. Maybe now I’ve typed something it might. Fingers crossed.

Ballina Fringe Festival – A Brand New Festival of Words, Art & Music for North Mayo

It’s “thumbs-up’ from Ballina Arts Centre Manager Sean Walsh as Ballina and its renowned Salmon Festival add yet another dimension to its outstanding community festival programme with an impressive artistic Fringe Festival to be held in junction with the town’s festival week. Attending the launch of the Ballina Fringe Festival – with all its outstanding artistic events – were main sponsors Pearse Farrell and Bernie Keogh of The Ice House Hotel Ballina, pictured with Mayo North’s Anne Marie Flynn, Ballina Municipal District’s Leas Cathaoirleach Cllr. Michael Smyth and tourism & marketing consultant Susan Heffernan. Picture Henry Wills.

Summer is here and it’s festival season again.  And the good news this year is that Ballina has a brand new festival coming to town!  Ballina Fringe Festival is a fledgling week-long arts festival has been curated to run from 6-15 July alongside Ballina’s flagship Salmon Festival, now in its 54th year.

Ballina and North Mayo have a proud heritage in the arts, and our rugged wild Atlantic landscape has inspired countless artists through the years.  Ballina Fringe Festival will channel this creativity and hopes to bring high-quality arts content in Ballina and North Mayo in an ambitious, sustainable way over the coming years, attracting locals, national and international tourists to North Mayo, making Ballina Fringe Festival an unmissable event on the festival calendar.

The inaugural Ballina Fringe Festival has a focus on how North Mayo, its landscape and heritage have set foundations for ambitious and creative arts in many media.  The flagship event of the festival, Crossing the Firebreak: An Exhibition by Donald Teskey is a rare Mayo exhibition of Teskey’s 40-year artistic career, much of which has been inspired by his residencies at Ballinglen Arts Foundations and along the Wild Atlantic Way.  This exhibition, in association with the Oliver Sears Gallery runs 6-27 July at Ballina Civic Offices.

Also in the mix is a diverse and engaging programme of evening entertainment, blending a very special evening of live music by Paddy Casey (12 July) and an eclectic variety performance based on his newest novel Heartland by the always entertaining Patrick McCabe (13 July).  Poets Vona Groarke, Tom French and Eamonn Grennan from the Gallery Press stable will bring their award-winning work to Ballina Arts Centre on 10 Jul.  The inimitable Paddy Cullivan will shine a light on events of 1798 in his show The 10 Dark Secrets of 1798 – we always knew of the extraordinary tale of General Humbert and French Mayo, but what other secrets of that revolutionary year has history been hiding?

Full festival details are available on www.ballinafringefestival.ie and Facebook, with tickets on sale now.