One of the main reasons why I moved into my own home was because I needed somewhere that would better meet my needs. Back where I was living before at my Dad and stepmum’s there was many things I found inaccessible. Firstly and a big one was the stairs. Even bum shuffling up and down them was a real struggle especially the worse my health became particularly on my bad days. There was also nowhere to store my wheelchair in the house. I also couldn’t have some of the adaptations I needed like grab rails, a second stair bannister or a key safe as well as things like a perching stool in the kitchen. My bath lift was a constant annoyance for my stepmum and also when we had people like my brother come and stay over.
I’ve been living here nearly two years now and my housing association has done a great job over time at adapting my bungalow to meet my needs.
One thing I love about my home is how compact it is. I only have a front room with integrated kitchen and living room (and a craft area), my bedroom, bathroom and then my lovely back garden (which is an ultimate added bonus). Not having to travel far around my bungalow is amazing and is so helpful especially with my limited energy and mobility. It’s also very accessible for my crutches and wheelchair.
I have smart lighting and smart plugs around my home in the front room and bedroom. This makes it much easier for me to control the lighting. The main lights and lamps have smart bulbs in them; I can change the colour of the main lights to suit what I’m doing. I can also control how dim or bright the lights and lamps are. I have a smart light switch in my bedroom to make it easier in say an emergency for someone to put the lights on brighter. The switch also comes off and can be used as a remote. Normally I control the lights on my Apple HomePods or on my iPhone or iPad. I also have pre-set light mode settings.
My HomePods also have other features like timers, alarms, weather, speakers. I can also use it as an intercom to communicate with my carers in the front room when I’m in my bedroom if they can’t hear me.
I also have remote controlled lights in my bedroom for softer lighting or sensory lighting. I’d love to get remote controlled blinds and a smart thermostat as well at some point.
How my new home has been adapted
Ways in which my new home has been adapted or equipment I now have to make my life easier and to support and enable me to live independently.
Outside the front of my bungalow
- I have a key safe people can access my home when I’m unable to open the door myself.
- The ramped path up to my front door has been widened so I can turn my wheelchair around at the front door. Rails have also been installed either side of the ramped path.
- On my front door I have a T-Pull bar which allows me to pull the door towards me when I’m in my wheelchair so I can close and lock it.
- I have a Ring doorbell which I find helpful and it makes me feel safer. It allows me to communicate with carers especially if I’m unable to open the door I can ask them to use the key safe. I can also communicate with other people at my front door such as ask people to give me extra time to get to the door or to check ID.
- My Dad has made the front garden very low maintenance for me.
In my front room
- My inside front door has a thumb lock. Instead of struggling with keys (even with my KeyWing adapters on) I just have a large knob to twist to lock and unlock the door.
- I have a perching stool to use in the kitchen.
- In the kitchen I bought an induction hob oven. Though my PA/carers do most of the cooking I like to cook and bake sometimes with my PA. I got an induction hob because it was much safer than a gas or electric hob oven and it really does have a lot of safety features which I like.
- I have the furniture spread out so there is room for my wheelchair, it’s also easier to navigate to chairs in my sitting area and craft desk when I’m walking on my crutches. I also like to keep the floor clear of trip hazards and to give me landing space should I fall!
- I have a little parking space for my wheelchair and my Batec.
- I’ve also turned my fridge door into an organisation board which I find helpful.
- I have my hospital ‘go bag’ hanging by the front door.
In my bedroom
The door between my front room and bedroom is a fire door. The fire service recommended this and there wasn’t a legal requirement for my housing association to put one I but they did. This gives me a lot of reassurance especially at night time or on a bad day when evacuating on my own would physically be difficult.
My mushroom lamp - The fire service also on the latest annual assessment recommended I get a CareLink smoke detector so I’ve had one of those put up in my bedroom. Should it go off CareLink will be alerted that my smoke detector has gone off and they can ask over the intercom if I’m okay or need the fire service calling if there is a fire (hopefully never).
- My CareLink intercom is also in my bedroom but they can hear me all over the bungalow (if they can’t they’ll call me). I wear a watch on my wrist I can either press it for emergency assistance or if I fall it picks up the impact and alerts CareLink and they come on the intercom to see if I need help.
- I have my profiling bed, this allows me to independently get comfortable. It also helps me manage my autonomic symptoms by being able to tilt my bed and slowly sit myself up if I’ve been laid down. It’s also beneficial for those caring for me, including PAs/carers, nurses, community phlebotomists etc. (and when Hollie comes to massage me) as I can raise the hight of the bed making care tasks easier and protecting their backs.
- I also have a hybrid airflow mattress on my bed. This means it’s a static mattress with air flow tubes on top. - I’ve recently got a new mattress which is more comfortable because before I used to lay on the moving air tubes but now I lay on memory foam with the air flow underneath. What I like about my new mattress is how very quiet it is which is great for my hypersensitivity. My air flow mattress is there to help prevent me from developing pressure sores.
- My bed can also be accessed from either side now in my new home which is helpful.
- Over the top of my bed I have an over bed table. It’s nearly the length of my bed and can raise or lower in height. It’s on wheels so I can have it at the end of my bed or I can bring it towards myself to eat or do activities. A large portion of the table tilts at different levels so that’s helpful at times for some activities. Then the other part of the table just remains flat so I have a non-spill cup holder there and usually my pop socket phone holder. I also have a rechargeable lamp clipped onto my table that has three light settings and can dim and brighten which is helpful for activities and reading.
- Attached to my bed I have my Flexzi iPad stand which is amazing for hands free iPad use when I’m reclined or laid in bed.
- I also have plenty of room to store my medical supplies in my bedroom as it’s a good size room.
- I also have soft and sensory lighting in my bedroom. For example I have my different fairy lights; some come with a remote that I can dim and brighten. I also have my mushroom lamp that I find helpful for low lighting; it also has sensory light settings on it too. My aromatherapy diffuser has sensory lighting on as well. I also have my Mathmos Space Projector to project a lava lamp or a moving floral image onto the ceiling.
In my bathroom
My bathroom isn’t a wet room. It’s a normal bathroom with a bath which is what I needed when I was looking for a property.
- I can’t physically tolerate the sensation of a shower it’s very painful for me so I have a bath each day. To get in and out the bath I use a bath lift which lowers me into the bath and then raises me out.
- I also have a grab rail next to the bath so I can sit myself forward and I also have a grab rail near the toilet that I use.
- I also have more storage for medical supplies in the bathroom.
Outside in the garden
- My Occupational Therapist has given me a step as the step down is too far on its own for me. (I find it strange with my bungalow being a new building and the front of the building is ramped but there’s a giant step at the back of the building.)
- I’ve got a grab rail on the wall to hold onto as I step down onto the patio.
- On my keys on the back door I have a key wing to make it easier to turn the key. (I have lots of little gadgets).
- My Dad keeps up the with the gardening for me and is designing it to be easy maintenance for me so I can enjoy it but have what I want. For example raised beds so they’re at a better height for me. I also wanted a lot of nature in my garden so I have a bog garden than needs no maintenance and my seating areas will be fake grass so there’s less grass for my Dad to maintain. My wildflower patch that we’re hoping planting this year will also be low maintenance. I plan to install a watering system to make it easier once I have plants.
I feel so lucky at my age to have my own home and to have had it adapted for my needs. I’m also really grateful for my equipment that allows me to live more independently and give me more comfort like my bed and mattress. And also my Batec and very soon to arrive GTM wheelchair! I’m also grateful for my care team too as without them all: PAs/carers, the community nursing team, the community therapy team (OTs and physios), and my family and everyone else Ikve not listed wouldn’t still be here without them all. I hope I will have many more happy years living here.
I am worried of course about the proposed cuts to benefits as it would have a HUGE impact on my ability to live independently. From the practical side of paying for my bills, utilities, food etc. but also my disability extra costs. Being disabled can be very expensive, cuts to my benefits would also impact on my ability to buy my gadgets that allow me to do tasks independently. As well as little things benefits allow me buy essential equipment not provided for by the NHS such as my Batec and my new GTM wheelchair.
I really hope that if the benefit cuts go ahead the government will listen to campaign groups like Scope in the impact it will have on disabled people like myself and I won’t be affected too much so I can continue living on my own. I wrote another article for Scope this one shares my story one the impact benefit cuts could have on me as a disabled person who lives alone.
