Garden make-over to create accessible garden

Garden makeover

A few images of the Before - and After of my garden transformation.

Trust me - there was an awful lot of 'in-between'. 

Must say, I am proud to have orchestrated this change and am very grateful for ALL the help received. Too many to mention all here, but you know who you are. My deepest gratitude.

I spend hours looking at images, making a scaled plan, designing layout and the corner seat. I watched garden programs on Netflix when I got frustrated that I couldn't actually do the work myself. The future (possible) need for wheelchair ramps from backdoor and into studio have been taken into account in my design.

A lot of materials, slabs from the garden, paint, plants etc were re-used, or moved.

A few more things to finish, like painting the house, some other walls to finish painting, cushion for seat etc. but my goodness, what a beautiful peaceful garden is has become. 

I can now go safely and easily around my garden on foot or in my wheelchair. There is a lot less actual gardening to do, and much more time to just rest and watch and listen to the birds.

spring 2019

(spring photo of a few years ago)

Trilled with ALL the help 

   
what it became,  summer 2019




Studio painted with a green 'wash' (left over bedroom paint)

My once very much beloved greenhouse had to go too. A big decision, but the space it created is just wonderful. It has gone to another good home.

 

Shed wall is a lot more pleasing on the eye too!

The icing on the cake - a wonderful corner seat where the bins used to be. Created by Joop and Adrian Duyn

view from my corner seat - and 'boardwalk'

 Even the garden entrance at side of house had a face lift. Amazing what can be achieved with a 'bit' of creative thinking, wood, bamboo and a pot of paint.

Trilled!

The road to nowhere

The challenges of organisations 'joining dots'.

My main challenge I am experiencing is to have the HSE Disability Services "join the dots" among their departments.  For All of them I am registered as disabled, except for part of the Disability Services... 

But THAT is a story for another day.

This story is about the HSE and the County Council and contractors, not always joining dots...

In February my manual wheelchair was being serviced. The Occupational Therapist (O.T)  was informed that I really needed to have my chair replaced. It was eleven years old.

I am hugely grateful for the expertise of the O.T. and the Rep for how they managed to create a chair for me which would support my body much better, which would allow me to leave the house more easily, to find a chair which would fit in my little house, a chair which can be dismantled for transport and which is both a manual and powered chair. 

No mean feat!

One of the concerns of the O.T. and Rep and many others whom have seen me using the existing ramp to my front door, was the gradient. The ramp was put in ten years ago, and has always been too steep. While I used a mobility scooter, it was just about manageable. Not safe, but manageable. But I was not allowed to go up or down this ramp when the new wheelchair would arrive.

Due to more physical challenges I have not been able to use my mobility scooter since October 2017, and have therefor not left my house independently since that time.

So, I contacted the County Council (I live in a council owned house) to request a new ramp. 

I rang in February, and was asked to write a letter.

I wrote a letter and received an application form in the post, without any accompanying note.

I filled in the application form, which also needed to be signed by my GP.

The O.T. wrote to the council as well.

I came up with a plan which would be the least damaging to my beloved garden. It did mean taking out one of the apple trees. A new ramp could be made around the other apple tree, and have a new wider entrance made.

In March the council engineer came to have a look.

I was away for the puppet travel, and when I came back in April I contacted the council again to get the ball rolling again. Or to get it rolling at all...

In April two council engineers came out and did all the measurements. I sat outside on my rolator to talk about my suggestions. They seem to understand.

When I saw the drawings I cried.

The drawings were designed as if the ramp was for a commercial building. Straight paths, landing squares, railings on both sides. And most upsetting of all was that the ramp was designed straight through the area where my beloved apple tree is.

The whole design made me feel vulnerable. As if it was saying: "look, here lives a person with a disability..."

Thank goodness they listened and redesigned part of the ramp. Then, three quotes were needed for the council to decide who was going to do the job... and if the job would be done at all...

The O.T. is facilitating a chair which would increase my independence but the council could not guarantee that a suitable ramp would be made.

My wheelchair arrived around the middle of June.

It took until the end of August before the go-ahead was given by the council to build the ramp. All along I made clear to the council that if they did not do the job, I would get someone to break through the wall and make the new entrance. Not allowed, but they knew I was serious. I needed to be free to leave my house.

Two weeks ago the job started.

And to my great relief the builder and his main man who did most of the work, respected my garden, and suggested to create a more gentler shaped ramp. 

I was, and am over the moon. It is beautiful. 

First they had to take away part of the old ramp. A noise affair.

And remove a section of the stone wall

Extiment when the 'Concrete' truck came

 

And I could see the beginnings of my new escape route

The following morning was a BIG day.

I had my first (and last for now...) spin out of my house, in my chair, down the ramp, onto the street, and up the ramp again.

What a memorable moment.

After ten months of being confined to my house, unless 'escapes' were aided by friends.

I loved how the Apple Tree was saved and respected. How it creates an arch over my new 'run-way'. The "Yellow-Brick-Road" although not yellow. (yet)

Unfortunately that is where the fun ended.

The road to nowhere 

After two beautiful pillars were build, the workman left on the Friday . 

The builder (boss) was suppose to come back after the weekend, to hang the gates, and to put up the one safety railing.

The work week has come and gone.

No gate.

Instead there is a temporary sheet of plywood attached by a rope to the apple tree. This will keep dogs and unwanted strangers out of my garden. (I feel more secure not have this part open to anyone, as I can't see who might walk around my house.)

It has also left me inside my house/garden, as I can't move this heavy sheet.

My friend Anne suggested to build the sides of the ramp up with rocks (from part of the wall) to stop the soil from the now higher raised bed falling or washing onto the path. She did an amazing job.

singed!

The whole job was done with so much care and attention - suppervised by Póilin Puppet and visiting neighbour cat Pip. My garden is more open, more spacious, the road to freedom will hopefully be completed soon.

I just find it hard to understand when one is So aware of what this new ramps means to me, to freedom it will give me, to then not come and do the finishing touches.

I will give thanks to the builder in the hope that the comes to complete a beautiful and meaningful project, soon. Monday... To "join the dots".

Pip and Póilin

Walking sticks or rolator

Yesterday I had a follow up meeting with the Community Physiotherapist after the hospital stay a month or so ago.
I was greeted with utmost respect and understanding. The assessment was detailed and lasted for over an hour. She gave me much credit for knowing my body well, and for being aware of the value of pacing etc. It really warms the heart to be listened to, and to have someone work with, to see if there is anyway I can improve my mobility and ability to some degree.

As we conducted the first part of a balance test, I kind of joked how I used to be a gymnast in my day. A reasonably good one. I even did some teaching for a few years. Good memories. Very good memories.
The physiotherapist said that the experience of being a gymnast probably helps me now with how to evaluate the workings (or non-workings) of my physical body. I know how to adjust my posture, although this does not come natural anymore.

Another discussion, after spotting a rolator in the gym, was about the use of mobility aids.
I have a parking lot full ...
From walking sticks, to a rolator, manual wheelchair and two mobility scooters (a small portable one, and a big sturdy one).

After my steps into the sea in Texel,
with my brother Kees

As I want to build up my walking outside the house again, which I had resumed last autumn but collapsed back in February  I was wondering should I use the rolator in stead of my two sticks?

During a test, it proved that I walk with the same """speed""' (ha ha) with both, but that maybe the rolator, which has a little seat on it, will ease the stress of walking outside the door.
I can walk the same distance, but can sit down and enjoy the view, without the worry that I need to get home quick before my legs give up.

I like that.
It makes sense.

The reason I suppose I am more likely to use sticks v. rolator is a mental one.
With sticks I feel less disabled than using a rolator.
The same counts for a manual wheelchair verses a powered one.
My 'pimped' wheelchair versus a boring black one.
I feel less disabled ON my scooter, than IN my wheelchair.
Or being in wheelchair accessible taxi (seated in my wheelchair) than in the a transit with the HUGE letters Irish Wheelchair Association on it.

It is all just a tricks of the mind.

page from Into the Light. 
IN a wheelchair, or ON a scooter

my pimped wheelchair

Pimping my wheelchair changed social perception

Adapting: Make (something) suitable for a new use or purpose; modify

(Oxford Dictionary)

The power to change perception

by adding a bit of colour to my wheelchair

page from Into the Light

Adapting mobility aids 

can increase independence 

or make them more fun

Pimping

my wheelchair

changed the social perspective 

from being a dreaded aid

to comments like

'I want one too' 

Further reading and links

• The process that went into pimping my chair
• This project was also featured in the IWA Spokeout Magazine
• Available books, including Into the Light

Miracle, miracle, she can get out of her wheelchair

Yesterday I wrote about the wheelchair in my life. This sparked some interesting conversations, and thoughts on furthering our independence by using a mobility scooter. 

"In a wheelchair or On a scooter..."

The wheelchair:

'stuck' against a tree in Brugge- Belgium'

Acceptance from others living with ME/CFS:
"It was so challenging because I thought I was "giving in" to this disease."

I can fully appreciate this as it is a huge step to accept the need for mobility aids. It can be seen as giving in, but in truth it is a way to maximize our ability, not disability...


Acceptance from a mother's perspective:
"There were so many lows when Anna was ill [with ME] but for me One of the most heartbreaking was the day she asked me if she could get a wheelchair. I remember going into my bedroom and crying my heart out. It felt like the end, it felt like she was telling me that she was never going to get well. I just could not accept it, and I'm the end she did not get one. I still sometimes think of that day and wonder if it would have given her more freedom and whether it would have been the right thing to do..."

Anna turned her life around in the most remarkable way. I will write about her soon. 

The feeling of 'guilt:
"When I have been out and about I feel a mixture of guilt and fear ( If we get stuck on a step I get out of the wheelchair and walk over it - will people think I am a fake or like this character in "Little Britain" !?) 

This brought back a memory of one of my early trips around town in my wheelchair.
Heike, the friend who brought me on that very first trip outside my house, brought me for a walk towards Lismore Cathedral. The path is very rocky. The step up into the graveyard (well worth a visit) was just that little bit too high to mount. I stepped out of my chair and Heike roared:

" MIRACLE, MIRACLE" 

This memory still makes me chuckle! 

Feelings of relief:
"... relief that people finally understand that I am physically ill even if nobody can see this otherwise." 

Yes, indeed. Living with this at times 'invisibile illness' is hard. People judge us by what they see, not by what they know or by what we tell them. 
Using a mobility aid can break that barrier. Walking out of a public house, I can be seen for a drunk (drunk on chamomile tea or orange juice...). Using my walking sticks, my unsteady gait is seen as a result of illness.

Positive responses from other:
"...Great that you've come to flip viewing the chair as a symbol of what you don't have to being your means of getting about and communicating with the world."

The mobility scooter 

On Youghal beach with my scooter. Happy!

To really is that many of us who live with ME/CFS do not have the strength to push our manual wheelchairs, so this still means a level of dependency on others to leave our homes.

A mobility scooter is the way to combat this.

My scooter enables me to go into town on my own, do my shopping. Further afield I do need someone to put it, and me in their car, but as this (Rio 3 lite) portable scooter can be totally dismantled it fits into the back of even the smallest car. The battery lifts out, the seat comes off, the handle folds down. 

I have brought my scooter on trips to Holland, and on holidays in Ireland. It is not suppose to be used on rocky, sandy paths, but it is always worth a try! I have trailed the paths around Dzogchen Beara and the beach in Youghal.

Just be sure to bring your mobile phone in case you get stuck!!

Links, and further reading:

• Although the battery of this small scooter is airline friendly, I was refused to board on Aer Areann flight in 2009. I fought this case in an equality tribunal. If you like to read about this, here is the story 
• more scooter and wheelchair stories and reflections in my books 
• Small Scooter:As for some reason the scooter is much more expensive in Ireland than in the UK I aksed this company to price match in Euro, which they did! They are also available second hand on various sites.

The Hate-Love relationship with my wheelchair

Using a wheelchair was for years a very contentious personal love-hate relationship.
But I have finally reached acceptance. I love my chair. It is very comfortable.
And what society's thinks of it... Oh wel... let them judge me... I know who I am!

Pages from Into the Light by Corina Duyn

I remember when my first wheelchair was delivered. I could not imagine being the person to sit in it. I used to be a nurse. I pushed wheelchairs. I never meant to be the one being pushed. 

The wheelchair was left in the conservatory of the house I was staying at the time. My favourite room in the house. But yet when the wheelchair was there I avoid the room. I couldn't even look at the chair, not mind using it. A friend came to stay and persuaded me to bring me for a spin. I agreed. At night. In the opposite direction of town. So nobody would see me.

Page from Hatched by Corina Duyn

Of course I quickly realised that the only way I would be able to leave the house was to be seated in a wheelchair and having someone push me. A very hard realisation. I had to learn to except my own thoughts about being in a wheelchair. But also had to learn how society's views about me changed. 


Children:

EGGSPLANE 

Spring 1999

A 4 year old

in the supermarket 

“Why are you

in a wheelchair?”

While I thought hard 

for an appropriate answer 

he suggested

“are you tired of walking? 

(from Hatched- by Corina Duyn)

Adults: 

Suddenly I'm treated as a child. As if I have no capability of making decisions for myself. As if I don't have views of my own. Knowledge of my own. 
I remember sitting on my mobility scooter at a train station.  I was the one travelling. My sister standing beside me to send me off. A woman walked towards us and asked what time the train was leaving. I told her.  She ignored me and asked again looking at my sister. I told her again. She still ignored me.

I am seated in my wheelchair, being pushed by my friend. We walk into a shopping centre which was celebrating its 1st birthday. A man dressed as a pirate to entertain the children, ran up to me and tried to give me a kiss and some sweets.... 

Adults make assumptions. The children just ask.

"But why did I still think of walking as the ultimate success."  Bonnie Klein - Slow Dance

Over the years so I have come to accept and even love my wheelchair. While writing this I am sitting in my wheelchair at my desk, using voice-recognistion software to write.  It is the most comfortable way to sit and the easiest way to share my thoughts and experiences with you.

I do not require the user to wheelchair on a full-time basis. But I have learned to love my chair, and make it part of me, my life, and my house, to make life as comfortable as possible!

Using mobility aids marked the transition from invisible illness to visible disability

The wheelchair made it possible to be part of life in spite of restricted mobility

Wheels represent movement

Movement is life 

Quote from Into the Light  by Corina Duyn

Movement is life.


Move freely my friends, in whatever way, with whatever aid make that possible for you.

 Notes and links:

• Into the Light book is available from my Web Shop from €20 and upwards.
• Hatched is now available as PDF-e-book HATCHED Re-hatched, from Web shop  €3.99
• If you prefer the printed copy of Hatched, there are just a few left. They are €20 inlcuding postage worldwide, click on the Buy Now Button