Lilo

Lilo

Thursday, 5 July 2018

Happy Birthday NHS

It's 70 years since the inception of our NHS. 
As someone who has always been used to having free at the point of access health care, it could have been easy to just take it for granted. 
But born in the early 60's, to parents and grandparents to were used to a totally different way of medical care, it was a kind of unspoken rule that you didn't waste this new method of care.
 They had been used to times of maybe not having the money for the doctor, so any time of illness, you really had to think hard about if you should call the doctor out.
A kind of respect for the system. 

I didn't realise the significance of the date of our wedding at the time, but Matthew and I set our date - 5th of July 1985. We just wanted a good day, with our families and friends and we would sail off into married life and all would be happily ever after.

Ah, so young. So na├»ve.  So sweet really when I look back!

So here am I, sitting at the pc 33 years on and looking back on the impact our NHS has had on our lives.

Very quickly, we began our journey into our medical care system.
Matthew developed Epilepsy, which, for a number of years meant hospital visits, GP visits, trying out drugs, combos of drugs...……. until, it was decided that neurosurgery was part of the solution.
As scary times go, having your hubbie going under the knife and you have a 9 month old child, well, it was a scary time. 
With a few tweeks over the next few years, things are no fine. But thanks to our Institute of Neurological Science, things are fine now.

Me - well, I gave the NHS a good run for its money. 
Endometriosis - and the "you may have some issues" talk about babies. 

Thankfully. my body doesn't listen at times.
 2 babies.
 The a recurrence.
Then another baby.
Till I got so fed up with the pain I asked the Consultant to just get rid of those bits that I didn't need any more.
BTW - the deliveries of said babies was not easy - did I  tell you my body doesn't listen?

Well, that meant 3 c sections, some crazy bit, where I was told the surgeon had his foot almost on the table trying to pull my chilled baby out. Not saying who it was, but youngest children...……………..!!!

And my children have had a fair share of treatment from NHS Doctors, nurses, ST, Physio, OT, Genetics teams...………… We have quite a mix in there .

I shudder to think what all this would have cost if we'd had to pay. 
Things I can do - well, one is self refer to our genetics team to get an appointment to see them. 
And they are only a few miles away.
I've heard of people in other countries being told  no - no genetic appointments. And anyway, the nearest team is maybe hundreds of miles away.

I've had appointments where I've argued the toss with an eminent Professor of Paediatric Neurology and didn't I just shock him when I spoke back.
I've argued with a geneticist and told him if he couldn't work out what was wrong with my son, told him to send me to someone who might have a clue  .   (in fairness, I don't think he really knew how worried we were and how much it impacted on our life)

I've had to explain  to a nurse in A+E that my daughter is NOT having a panic attack, but it's her asthma (and try yo make sure here boyfriend sitting beside me in the waiting room didn't go into a hypo due to diabetes.
I've asked anaesthetists to look after my boys as they went for surgery and Speech therapists to help my boys with various issues round their speech.

I've cried at times, had to explain to my GP that i'm not really an alkie  , I just have a screwed sense of humour.
I've take great pleasure in watching a GP open the bag we've brought back from Disney as a thank you for writing the letter for our pass - small price to pay for something they didn't need to do (and i'm sure THAT wasn't on the remit 70 years ago!!!)

So thank you to all the front AND back line staff in the NHS. We need you, we should cherish you 
and here's to another 70 years.


Saturday, 23 December 2017

Have Yourself A Merry Little Christmas - Nicholas Wells





So, here we are again at  almost the end of another year.

It's not been too bad for us, apart from social work rattling the cage and giving me a near heart attack over money and budgets. But that got sorted out.



Lesson is - don't rattle a cage at me - I can rattle back just as hard, loud and long!!!



But some friends have had a rough year, so they are in my thoughts and i'm sending you good wishes.



I love this song (and the singer!!) Several years ago, the staff choir at St Ambrose sang it, very well.



So take that shining star, hang it high, where you can see it - even in the darkest times. And i'll be there - even if it's just with a cup of tea for you!!

Thursday, 19 October 2017

Being a carer............

.......... Can be lonely at times.



On the outside, we can look happy and in control. But in reality, we're a bit like ducks - all calm above the water, but feet going like fury in the water to try and keep going!!!



Thing us, not everybody under what it's like being a carer.

Actually, I don't think people really understand until a caring role lands in their life and things change.



Sometimes, you really just need someone to chat with, who "gets" that you are fed up and stressed. That you need to have a good moan about things, without being judged and people get your warped sense of humour, because they too can have a similar warped sense of humour!!!



But the thing is, we are always so busy, it's hard to get together with other carers. It can be a hassle and often you can think of 101 things you need to do.

So it's a bit of a vicious circle.



A number of years ago, a friend dragged me along to a carers support group.

At last, people to talk to.

And for a few years, it was good, getting the support, people to talk to. But things change and I was finding myself coming home more stressed than I had been before. Going along had become a habit and it just wasn't doing it for me.



So I then got involved with a FB carers group.

They are a crazy bunch mainly, I know some of them in real life and others in cyberspace. We can moan at each other, support and generally just try to make sure that we don't get .that lonely feeling too often.



But i was finding that i really wanted some human company. One of the girls suggested I go along to another carers group. I was a bit, thanks, but no thanks. Been there, done that and I don't want to be stressed again.



But I found myself needing to chat to someone about stuff for Peter .



So I went along to the carers cafe.

I even found I knew a couple of people!!!



I'd forgotten how god it was to sit and chat, with a cuppa and maybe a nibble or two.

And it was worth the effort of getting myself out of the house for a bit.



A couple of weeks ago, the MP came along to have a chat with us. He wanted to find out what concerns we had and maybe help out if he could.

Going round the room, those who spoke all had something to tell. No matter who the person cares for, no one has an easy time and often a take would be told and we'd laugh, or say "That's not fair/right". Or others would tell of their experiences on a certain topic.

But the the comment that stopped me in my tracks was a comment from Rosemary. She had been to the GP recently and he asked how she was. Ach, alright she said. So the GP proved a bit deeper and she kind of admitted (as most of us carers do!!) that things were hard and she was feeling it.

The GP said "you know Rosemary, even Jesus had 12 friends to help him!

A lot of us carers just get on with it, because we think it's easier to just get on with it.



So it can be a vicious circle of being lonely, then just not being able to get out of it, because you're doing so much for the person you care for and it's a hassle to get out on your own for me time.



But it's been good the past while getting to know these carers. It's nice when someone asks how you are and doesn't matter if you grumble a bit, because you know that maybe in a week or two, you'll be that listening ear.



So, this time, I'm giving you a are treat.

I've just found out about Nicholas Wells from a fellow carer. This song kind of sums up, for me anyway, how carers support each other. You don't need to be there ALL the time, now and then can be good.



Oh, and the man likes cats. We KNOW  cats suss out the good people. His cats have told our cats he's a good guy!!

But I suspect that they just want some cat treats!!!



Sunday, 2 July 2017

Soaring, tumbling, freewheeling through the Circle of Life

Peter and I have been very lucky in the past 9 months to have seen both The Lion King and Aladdin in the theatre in London. 
Peter loves music and if it's Disney even better. Well, he's a Disney geek who loves a Princess, so who am I to deprive him of what he likes.

There are a lot of "autism friendly" events these days, which is fantastic - families don't feel so pushed out of doing family things and they can get out to the cinema or the theatre and not worry about being judged.

But our autism journey began a LONG time before cinemas and theatres (and even shops these days) did this kind of thing - lights up, bringing your own juice and sweets and so on.

Plus the fact I have 2 other neurotypical children who needed days out and needed mum and dad to do things with them.

(Please don't kick me down and say that Peter must be more able than your child. We all have to do what we think is right for our children and it's a hard road we all walk)

I do believe that much as Peter has an ASD , a rare chromo abnormality and learning disabilities, he has to live in what is really a mainstream world. And that world can be nasty at times, to people they don't understand. So it's nice to know that we . as parents, can choose to opt into a friendly screening of a film, or afternoon at the theatre.

But it's also nice when we decide as a family to go down a more mainstream route and have staff who go all out to help us. 
As a family, we can make a bubble round Peter, to help him feel safe.
Yes, we do have the tantrums and the meltdowns as well!! I remember well one Sunday  going off to New Lanark for the day and he has a face like fizz on him, because HE didn't want to go. Didn't matter what the rest of us wanted to do. He wanted to stay at home.

So it was deal with the fizzy face (by saying you know what, tough. We're a family and we want to do things , like together!!) or go home and have  2 more fizzy face to deal with.

For those of you who have never met my children, you do NOT want to deal with fizzy faces. It's not nice , as the Genie says and there may be blood.

So, like Aladdin on - the magic carpet - says to Jasmine "Do you trust me?", we had to take Peter by the hand and ask him to trust us to take him on the magic carpet and see how things went.

There are times we've soared, times we've tumbled and times we freewheel it, making it up as we go along. Oh, and add in juggling apples, jumping through hoops and keeping plates spinning, you can imagine that at best, it was an adventure, at worst...................... oh, just don't even go there - you don't want the tears and the hassles.

Peter copes fairly well with doing mainstream things, but i'm sure that's because we didn't have the option of any other way and the need  (and want) to go out as a family. 
Paul says he loved it at concerts he was doing, seeing Peter jigging about in his seat, enjoying the music. I think he did once get a "huh" from someone in band, but he just told them that if someone enjoyed the music, so what.

So, we often borrow that magic carpet and go on adventures.

Sometimes it's brilliant.
Sometimes it's ok.
And sometimes it just doesn't work out, but heck, that's life.

As I sat in the Gods at the matinee of Aladdin on the 17th of June, we sat and sang I Can Show you a world. 
But in truth, I think Peter and  Louise + Paul have shown us a world where life might throw up issues, but we work on it.
And as they say in Lion King - never take more than you give.

Life is there to be lived, even if you have to take it at a slightly slower pace!!! 



Wednesday, 14 June 2017

Ohana - some very special people

It's that time of year again.
Rare Chromosome Awareness week, where, by now, you all know, I facebook, twitter, share all sorts of info and facts to help you understand our life with Peter.
And the blog. You have to do a blog. 
Well, I don't need to, but I want to.

Every story in Unique is, well, unique.

I'm sure most of you know a bit about Peter. He has develops delays, an asd, learning disabilities and *something* genetic going on in the mix.
We've just not managed to quite pin down what that something is. The latest bloods, taken about 4  or 5 years ago seem to have been, well, not quite a red herring, but threw up more questions than answers.

But never fear, our new Geneticist has a few ideas. We just need to wait for more bloods to be done and sent off.

We have been involved with Unique for 27  years. 
The support we've had is brilliant. I'm not made to feel I don't fit in because we don't have an official diagnosis. There are others who have been in the same situation as us who get a diagnosis when their child is an adult, so I live in hope.

(Mind you, someone, not on the Unique fb page, but another carers group did question WHY  we were in the group. After all, she said, how can you possibly get matched up with other families. I pointed out that, yes I knew about SWAN - syndromes without a name - but back in those pre internet days, they didn't seem to have the support to give and even though I got in touch, they didn't seem so organised. So we stuck with Unique and have learned so much)

To be honest, this person has been the only negative person and even though she may have thought she was being helpful, it was a bit hurtful. I began to think we weren't as valued but other union families told me to behave. I was Part of the group and most of them wanted us to stay.
I will also say, that on line,both can't always know what someone is really meaning, cos you can't hear their tune of voice.
So note to us all, be kind.

So that brings us to Ohana.
Anyone who has watched Lilo and Stitch will know about Ohana.
Ohana means family.
And family means no one gets left behind or forgotten.
It does not need to be blood family. It can be like Unique, a group of people who are together to support each other.
New members start off asking questions, wondering if life will ever be the same again. (Often that's a no. But it'll be different)
Them you get to know other members. They could stay near you, so you have that connection.
Or their child, young person, adult has some things similar to your child.
Or you find that you have a similar way of coping with things, the same black sense of humour, so you chat more.
Then you find that it's not just you unique child you talk about, but the rest of your family.
Some of the people in the group have helped me when my parents were ill and then died. 
Sometimes, we plan to run off to an island, with supplies, but the realise that our offspring and spouses would get to the island before us and form a welcoming committee!!
Bang goes THAT quiet weekend!!
The support and friendship is what we really need.
Sue, one of the mum's I have met, asks just how Cargill go to meet someone for a cuppa.
Well, Aberdeen to meet her and Sophie, but we nearly met a family at Disney in Paris.(didn't quite work out, they were travelling to the park from the airport as we were travelling to the airport!!)

So it really is ohana. 
Support, friendships and a cuppa.
It's always good

Thursday, 4 May 2017

Elections, voting and living in the Dear Green Place.

As I walked home from the polling station today, I saw one of the things l love about Glasgow.
It's the trees and the knowing that there is plenty of green space in this city for the people to look at, walk in, kids to play in..................
There is a good reason the  name Glasgow  means Dear Green Place!!

Over the past 2 1/2 years, I've seen this view more than usual - because  we've been to the polls more times than usual.

Independence Referendum.
General Election.
Scottish Election.
Referendum on Europe.

Today was council elections and in 4 weeks, ANOTHER  general election.

(has no one told our elected members about voter fatigue?!?!?!)

The  general election was kinda sprung on us by Cruella,  oops, sorry Theresa May.

She says she wants a strong government.
I've lost count of the number of times I've hear those words lately and it isn't really cutting the tomato sauce in my life.

Not when there have been so many cuts to social care, cuts (in real terms) to benefits, people being turned down for PIP, who are ill, unable to walk far - even tho they would love to be able to walk and work and not be dependant on the welfare sate for money.

I was wanting to really have a go at anyone who turned up at my door looking for the promise of my vote.
I wanted to know WHAT they were doing to help the most vulnerable in our society, the people we really should be looking after.
And what about the people who care for them?

I saw this morning that unpaid carers save the government £15.1 million each hour. How true this is, i'm not sure, but given that we get £62.60 or thereabouts for more than 35 hours of caring.................. Go figure out just WHY i'm so mad.

I don't want a pat on the should, I don't want to be told I'm "doing a good job".

I want to be trusted to use my Son's SDS budget the right way.
Not live in fear that (as has happened to others) I will be told i'm not doing things right and as a carer, I am not allowed to go on some of the short breaks with Peter.

(think about this. Much as the workers would LOVE to go to Disney, the time away would take something 106 hours, roughly of his support. Given that he gets 15 hours support a week, how many weeks would we have to go without support to cover this break. Can any councillor , msp or mp riddle that one for me???)

Or being told that we're not allowed to choose who WE want to support our young adult.
Or being told that we just don't get it, so, heck, the council will just do it all for us.

Meanwhile, the person getting the support is wondering just what's going on.

All my son really wants to do is go swimming, to art class or walking group. To go to Karaoke and stun one of the support workers who didn't realise he could belt out the Proclaimers or Dolly Parton with such gusto.

All he wants to do is go on a break, sometimes with Mum - take her on Big Thunder Mountain and hear her scream, or go off to respite to get away from me at times.

But did anyone come to my door to hear my rant?
In a word NO.

Now, I appreciate my reputation and soap box may go before me  , but seriously ......No one. Nobody. Zilch, nada, almost nothing. One letter from the SNP, address to my hubbie.

Excuse me, but there are more people than him who vote in this house.

I got to the polling station this morning.

The 2 guys out handing leaflets really got wellie from me.

I did take my soap box (left the high horse at home!!)

Paul appeared to vote as well and he started laughing - told them that they'd better listen, because I may be a small wummin, but I have a voice and I use it when I get annoyed.

Thankfully, another woman came along and said that SHE hadn't had either leaflet through the door or anyone knocking, so I felt better about that, knowing it just wasn't me.

The SNP guy has got my details and concerns that he is passing on to their candidate for Westminster..

Yes, I did go and vote.
Because even in the 21st century, there are people in this world who do not have that  right.

The right to go and put their mark against who they want.
OR, to spoil a ballot paper in protest, safe in the knowledge that "authority" will come after tham for not doing what THEY consider the right thing to do.

I may be getting fatigued with all the faffing about and having to walk to a polling station.

(oh, jings, what a 21st century, 1st world problem. Having to WALK about 1/3 of a mile to go and cast my vote)

Then I remember 2 things - 1, if I don't cast my vote, I have no right to complain about the out come and 2, people fought long and hard to get the vote for future generations and that fight and struggle is still going on even now in parts of this planet we call home

Monday, 19 December 2016

Who stole half this year???

......... And can they give it back to me please. I feel as if most of this year has gone by in a blur.

It's been not too bad, weddings, graduations, engagement parties and a few weekends away.

Oh and trainee ninja duties!! Christopher comes along to annoy the cats, trash the living room, get a taste of rosti and then whirls back out, leaving gran clutching the gin bottle!!!!

In between all the goings on, we met our new Geneticist, who explained more about Peter's last lot of results and just why they don't seem to be the cause of his problems. It's now when, not if a new blood test is available to help us get to the bottom of it all.

Peter has enjoyed not only his respite, but the weekends that we've been away.
Disney was brilliant, as usual.
Lion King - we want to go back.
And Harry Potter, just brilliant .

Just need to keep convincing the powers that be the money is well spent and gives us both a break.

Mind you, I may be banned from going away. David Bowie died when we were in Disney and Fidel Castro popped his clogs when we were in London.
Mmmm. It wasn't me, honest!!

The tree is up, the presents are wrapped and the freezer is full of food, so we're sorted.

Have a good Christmas and a peaceful new year.