Neurodisney

As I type this 

I am sitting in a waiting room

In clinic D

Which is the Motor Neurone Disease clinic

In Beaumont hospital

On the north side of Dublin

I think I mentioned that my Dad was diagnosed with MND a few months ago

Which affects his lower limbs 

His hands are pretty much crippled

He can't open or close buttons 

Pull his zips up

Has trouble eating 

Opening bottles and jars

His legs are also affected

And he now walks with a stick

At one point today 

Dad came out of the bathroom holding his trousers up

And I had to zip and fasten them for him

Not that I mind doing it at all

It's just sad that he can't 

It was a real shock when he was diagnosed 

And we were all very upset 

But we are told his particular illness is slow progressing 

So 

Every couple of months 

Dad visits the MND clinic in Dublin

Where he is seen by the top neurologist in the country 

Professor Orla Hardiman

Amongst others such as the physiotherapist, the psychologist

And various other specialists 

This time 

Myself and my sister have made the trip to Dublin with my Dad

To give you an idea of the journey 

Dublin is on the east coast 

We live on the west coast 

And Dad lives right in the middle between the two

It's a three hour journey each way

Which makes for a very long day 

I really wanted to come today though 

To support my Dad 

And also support my sister who drove today 

I wanted to experience the clinic 

And meet all the specialists that Dad talks about 

My sister and left home at about 9am this morning 

We hit the road in good spirits 

Prepared for a long and possibly stressful day 

We arrived at my Dads at about 11am

Which is the house I grew up in

I don't go back to my home town as a rule 

As it is just one big trigger for me 

We drove through the town itself 

Some things hadn't changed 

Others were unrecognisable 

Being back in my childhood home is always very strange 

Every time I visit there it seems to get smaller 

Or maybe I'm getting bigger

I took a walk around the living room while waiting for my Dad 

So many ghosts and memories 

Mostly not good 

I could almost hear the shouts of arguments 

Feel the tension

The bad energy that lingers 

Truth be told 

I don't like being there 

I never did 

Anyway 

We hit the road to Dublin

I decided not to take my meds until I got home 

As I wanted to be as alert as possible

We arrived in Dublin at lunch time 

Found the hospital with relative ease

Parked in the disabled bay

Getting out of the car and in to the hoSpital 

Was akin to getting a child ready 

We had to put his jacket on 

Get his bag with all his bits and bobs

Get his stick 

Fix his clothes 

All the time watching that he doesn't trip or fall

The my sister accidentally knocked Dads disability parking disc down the front of the car 

Which with the use of a handy credit card 

We managed to retrieve 

And headed in to the hospital

As I walked through reception

I saw a sign for ST. Michaels ward 

Where I spent time when I was 19

In the detox unit 

Detoxing from heroin and methadone 

I was just a kid 

In a locked ward with hardened addicts

It was there I was first told that I had anorexia 

Bad memories 

We found clinic D

And took a seat in the waiting room

My sister and I went to get teas and coffees and sandwiches 

Which we had while we waited 

Looking around 

There were people in all states of MND

Some like my Dad walking with sticks 

Some in wheel chairs 

It was a bit of an eye opener to see the way things could possibly go

We weren't waiting long 

Before we were called to see the first doctor 

Dr. Amina Coffey

She was a young Muslim doctor 

Very pleasant

And very thorough 

As she carried out the examination

My sister took rough notes of things we would need to remember 

Then professor Hardiman saw Dad briefly 

They seemed happy that things were going relatively well

And there was no great deterioration

Next we saw Niamh

One of the physiotherapists 

Whose area seemed to be a closet off the waiting room 

She went through a questionare with Dad

Now we are back in the waiting room

My sister is dozing 

I am blogging 

And Dad is looking pensive  

In with the doctor 

Dad mentioned that his appetite has been effected 

And later on admitted to me that when he is hungry 

He can't just make something easily 

So he just has a cigar and a cup of tea 

This worried me some 

So the doctor weighed my Dad 

His weight was 76.9 kilos

I asked what it had been at his last check up 

She told me that it was 78.9 kilos 

So he has lost a little bit of weight

Not enough to be alarmed 

But it's something to watch 

It's now just after 4pm

And we are all starting to flag a bit

Waiting around like this is pretty exhausting 

And we still have the drive home to look forward to 

It's a real role reversal though

My Dad used to bring me to Dublin

To appointments 

To treatment centres 

And now I'm bringing him 

I can really see him getting old 

And it's not nice 

My Dad was always active 

Coached basketball teams for years 

And to see him deteriorate is tough

But that's life I guess 

Anyway 

I'll leave you here 

And hopefully we'll be finished her soon

I'm sure some of you can relate to parents becoming ill and old 

I was wondering how you all deal with it ?

Right 

I'm off 

See you on the next post....

Monday

I had quite the busy and productive day today

While I was over in my neighbours house minding Bobby the dog

Some people called to view the house

As it is up for sale

They were only supposed to look around outside 

But they asked me if they could have a look inside 

So I put Bobby in to the bedroom

And gave the prospective buyers an impromptu tour of the house

I have to admit 

I really enjoyed it

And really got in to it too

Before I knew I was using words like 'potential' and 'space'

And isn't the light in this room amazing?

They seemed quite impressed with the house 

And made all the right noises 

It is a lovely little cottage

And in an ideal world 

I would snap it up

If I had the funds of course

Why does it always come down to money.....?

Anyway 

After my little tour 

I came home 

And got a call from the lady from the employment scheme I was looking in to 

She asked if I could meet her at lunch time today 

I could 

So we met in the local village 

Her name was Majella

And she was lovely 

She explained that the course is about getting people back in to employment 

By matching them up with an occupation they are interested in 

It's a four year course 

A mixture of training and work

Which is 20 hours a week

She asked me what areas I am interested in 

So of course I said something to do with animals 

And asked her if it would be possible to get a place in a stables 

Here's where the downer comes 

The placement can't be in a working business

It has to be a non profit organisation

So that rules the possibility of working in a stables 

So my next thought was an animal sanctuary 

Which she didn't seem entirely thrilled about 

Failing that 

I said I would be interested in working in an arts centre 

So she seemed a bit more positive about that 

Majella is going to look in to it

And get back to me

But I have to admit 

I was disappointed about the horse riding 

I came home feeling a little deflated

So I decided to do a little digging Of my own

A few short clicks on the computer later 

And I had found a horsemanship course in a town about 30 minutes from me

I decided to give them a ring 

I was speaking to a lady called Atlanta

Who was very helpful 

She told me all about the course 

Which is 18 months long 

Two days a week are spent in the stables learning about care of the horses and riding 

And three days in the classroom 

It sounded brilliant 

So I asked Atlanta so send me out the application form 

She said now is a good time to be applying 

As there are six new people starting the course next month

So I could potentially start then 

Exciting!!!

So 

That leaves me with a couple of options 

I will see what Majella comes back to me with 

And I will also apply for the horsemanship course 

I guess I will have to choose one though 

The good thing about the employment scheme is that it's two and a half days a week 

Which is very manageable 

And I can fit all my other things around it

The horsemanship course is full time 

A bit of a drive away 

But saying that 

I am much more excited to do this course 

Atlanta told me that I could do a tater course lasting a week

To see if it's something I am interested in

To be honest 

I don't need to do that 

I know I'll love it 

But I guess the smart thing to do would be to do it anyway 

Whatever happens 

I will keep my options open

But I feel real excitement when I think of moving on

And doing something I love 

I just know that what I'm meant to do will happen 

Fingers crossed....

Before and after....

When I was at horse riding last week

One of the men called Pat 

Was asking me about my condition

You see the group I ride with 

Are called para-riders

Which means they have a physical condition or disability 

For instance 

Pat has multiple sclerosis 

MS

Land in his case 

It effects the left side of his body 

So he has trouble walking 

Among other things 

Pat was asking me if I have MS

And I explained to him that I am recovering from an eating disorder

Namely anorexia and bulimia 

He didn't really seem to understand what that meant 

So on the spur of the moment 

I showed him a photo on my phone 

Of me when I was very unwell 

He was shocked to see the picture. 

I also showed Eilish and Fintan

Who were equally shocked 

Then when I got home that evening 

I showed my sister 

She said that it is a brilliant photo

If a little disturbing 

I remember when it was taken 

I asked my brothers girlfriend to take some photos of me 

To document that time in my life 

Most of the shots are of me in my underwear 

But the most vivid shots 

We're the ones of just my face 

I look like I have given up 

Like an old and very sad woman

Then I looked at photos of myself now 

And the difference is night and day 

It shows me just how far I have come 

I feel so sorry for the girl in that photo

She looks desperate 

Lonely 

Like she has been crushed by her illness 

And by life

Her eyes look dead

I am just so grateful to have made it out the other side 

To have survived

Here are the photos...

Hello out there?

It's no secret

That over the last few months 

I haven't been the best blogger

Or the best reader or commenter 

I guess I kind of feel like I'm not relevant anymore 

That maybe my blog has done its piece 

And maybe I should think about retiring 

I don't want to

I want to write 

But I am just not getting much feedback these days 

So I don't know if people are reading 

If my blog is still helping people 

And even if it's good for me

Don't get me wrong 

I love you all dearly 

But I am starting to wonder if my blog has run its course 

And maybe it's time to say goodbye 

For now at least 

I started writing this blog back in 2012 

And have faithfully documented every step of my life since then 

I have met the most amazingly kind and wonderful people 

Who I will stay in touch with whether I continue to write or not 

I heavily relied on my blog when I was unwell

I was so isolated and trapped in my illness 

I didn't have friends 

I was so very lonely 

And relied on my blog for support 

For friendship 

For a break from the relentlessness of my condition

Blogger and all the girls in it

We're there for me over the years when I couldn't bear to leave the house or face the world 

But over the last six months 

My situation has improved greatly 

I made friends 

I held down a job 

I regained weight to a healthy BMI

And generally improved in all areas 

Now that my real life is flourishing 

I don't need my blog as much now

I don't have the time 

As I am out living my life 

So I guess that is a good thing 

Anyway 

This is a shout out to you 

If you are reading

If you are still following me 

Let me know t

Let  me know that you are there 

That I am still relevant

And please 

Be honest 

I'm a big girl 

I can take it 

I just need to know that I am still part of this community

And that our community is still thriving 

This is an invitation to you 

To comment 

To text 

To email 

Let me know that you are there 

That my story still needs to be told 

Show me you are there.......

Taking the rough with the smooth....

Life is full of ups and downs 

And the only real constant is change

As you know

I go horse riding on a Wednesday 

And for the last couple of weeks 

I've been been doing two classes instead of one 

Because the equestrian centre is a full hours drive from my house 

So it makes sense for me to make the trip worthwhile 

Let me tell you in no uncertain terms 

Horse riding is not easy 

The pros make it look effortless

And you could be fooled in to thinking that the horse does all the work 

But in actual fact it is hard work controlling a horse 

Trotting can be exhausting 

As you are using your whole body to rise and fall in rythm with the horse

You need to be pretty fit to ride a horse properly 

There is a reason why I'm always sore the next day 

It's because I am engaging so many different muscle groups while riding 

Anyway 

In my first lesson yesterday 

There was myself, Fintan and another girl called Laura 

Eilish is our instructor 

From the get go 

She was pushing us hard 

For me 

It was getting my posture correct 

And for Fintan 

It was his legs 

Fintan has a condition that wastes his muscles 

And he is finding riding tough going at the moment 

Fintan has become a really good friend over the last few months 

We talk every day in the phone 

We travel to riding together 

And we generally get along very well

But back to the point of this post 

After a warm up 

And a few rounds of trotting 

It was time for cantering 

For the last couple of weeks 

I have been stressing about my canter 

As it doesn't always happen for me

And I don't know why 

So 

I was first up

I trotted Star on and we got to the corner 

Eilish was shouting at me to 'Sit in!!'

And I was trying my best 

But it didn't happen 

She had me circle and go back around to try again 

But 

The same thing happened 

I was beginning to get frustrated at this point 

But Eilish had me go round again

And this time she gave me a whip

I trotted on 

Trying to get a steady pace 

So Star could easily transition in to a canter 

At the corner 

I gave him a tap of the whip as I sat in 

And straight away 

He went into a canter 

He really is a tidy little mover when he wants to be 

I got such a buzz off cantering around the arena 

As I reached the back of the arena 

I heard Eilish shout something at me 

I thought she said go around again 

But she had actually been telling me to circle 

I didn't hear in time though

And went around the arena again 

It feels amazing when the canter comes together

But it is beyond frustrating when it doesn't work out 

And more often than not 

I can't tell why it hasn't worked

Eilish really pushed me though 

And it can be hard to take 

After the first lesson

She asked me if I thought she was being too hard on is 

I said I didn't 

And I don't 

As a lot of the time I do better when pushed 

But sometimes 

Communication is an issue 

And something's get lost in translation

But I am so hard on myself anyway 

So having someone else be hard on me too can be a bit of a downer 

So the first lesson finished

And myself and Fintan got a cuppa 

And had a meeting about the lesson 

The general consensus was that it's a real bummer when the riding doesn't happen for us

But 

It's like anything 

Some days it happens 

And other days it doesn't 

And it could be down to any number of things 

The horse 

Fatigue

Or a combination of both 

That's just the way it is 

You hAve to take the rough with the smooth 

As I said earlier 

I am very hard on myself 

And am probably a bit of a perfectionist 

I want to be the very best that I can be 

I was to grow 

And improve 

And thrive 

I love horse riding 

But I also love to be good at it 

Fintan tells me that he is happy to walk and trot and do a bit of dressage 

But I'm not 

I want more 

I want to go as far as I can with this 

Where that is?

I have no clue 

But I am excited to find out 

To explore my potential 

I put a huge amount of effort in to horse riding 

It takes me over an hour to drive there

And in every lesson 

I give it my all 

Because I love it 

Because I want to be the best horse rider that I can be  

I guess that is my personality 

And when I was ill

I used these traits in a self destructive way

I used my stubbornness

Determination 

And perfectionistic streak to maintain an addiction 

And also to lose weight 

I am the type of person that when I want something 

I will get it come hell or high water 

In my addiction 

It was like playing a game of cat and mouse 

Trying to stay one step ahead of withdrawals 

And I was always playing catch up

I was constantly trying to come up with money to feed my habit 

And it is truly amazing the ways and means that I went to to score my drug

The lengths I went to were truly incredible 

So now I guess I am putting these traits and skills in to healthier pursuits 

Like horse riding 

Like my job

I swear 

If I put half the energy in to improving life as I did in to my addiction 

Then I am doing well

That is for sure 

In other news 

I haven't heard back from the course I applied for 

I really hope to hear something before the weekend 

I just want to know if I have a place or not 

As I hate hanging around just waiting 

But if it doesn't work out 

Then I will find something else 

I trust that I will be guided in to the right path

And that I am exactly where I am supposed to be

As someone once said 

When one door closes 

A window opens 

I just hope my next window leads me to a happy place 

I just want to do something to learn 

To be happy 

Content 

To work in an area I love 

To be a good person 

That's all I want

So that brings me to the end of another post 

Thank you for staying with me 

I know the changes in my life and my blog are difficult to adjust to 

But I appreciate you sticking by me 

Thank you 

From the bottom of my heart...

Tuesday

I saw my counsellor Breda again this morning 

I had to finish off filling out forms for the course I am applying for 

It's basically a work/training scheme 

20 hours a week

It's a tailor made course for each individual 

So I will be matched with an occupation that I am interested in

So for myself 

I mentioned horse riding

Animals 

And writing 

I'm really hoping a stables will take me on and train me 

And the great thing is 

That it lasts for four years 

It sounds perfect for me 

So I am really hoping it works out

There are ten places available 

With only two places left 

So I just hope I'm not too late applying 

We will see I guess 

Because the thing is 

Only a week after finishing work 

I  already starting to get bored

And last week 

I misused my meds 

In an effort to fight the boredom 

So I know I need to get busy doing something 

Before I get in to a rut of abiding my Mrs and doing nothing 

It really is my dream to work in a stables 

I think about horse riding all day 

I dream about it at night 

I love for Wednesday's 

And my two lessons 

There are quite a few horse riding centres near me 

So I have a few options 

I'm keeping my fingers crossed they it will work out 

So I'm getting used to having less money again 

Now that  I am not working 

I have a lot less disposable income 

And it is an adjustment 

But I managed before 

So I will manage again 

I don't have a lot to say today 

I just wanted to check on and say hello 

Happy Tuesday....

Sunday

Today 

Is the first Sunday I have had off since I started working four months ago

It's very strange

But very wonderful

I slept in until 9 45am

Which is very unusual for me 

As I am an early riser

And if I am getting up for work 

I get up before 7am

For as long as I can remember 

I have disliked Sunday's 

When I was a child 

It was the day before going back to school

And as I grew up 

It was the day before going back to work

Sunday was also usually the day when I had the fear 

A severe hangover 

Or a horrible come down from what ever substance I had been taking the night before 

I also find Sunday's a very lonely day 

I've always associated it with families and couples 

Doing family and coupely things 

So yes 

I was glad to be working this day for the whole summer

And today is my first Sunday off in a while 

I got up late 

Had breakfast 

And brought Lea for a walk 

Honey doesn't always come with us now 

And I don't make her go 

She comes when she feels like it 

And that is entirely her perogative 

My dogs are old now 

Nearly 12 years old 

But they have had a long and happy life 

And I am hoping that they will be around hit another few years 

Anyway 

This weekend 

An old friend of my sisters came to stay with us 

Geraldine 

She was actually my sisters first girlfriend 

And they were together for a long time 

So this girl has known me since I was a kid 

Her and my sister broke up 

But she still remains a close family friend 

And we all love her to bits 

So we had a lovely weekend 

Chatting 

Walking 

Drinking tea

And remembering the good ol' days 

The last time Geraldine saw me 

I was in hospital 

And not in a good place at all

So it's nice that she got to see me in a much better place 

She is so lovely 

And we had such a great laugh

Below are some photos we took this morning 

Happy Sunday

What ever you are doing...