How home is adapted for me

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 

I spend a lot of time in bed so I’ve set the area up around my bed to have everything I need. So my bedside draws are all organised with what I need and I have a few things under my bed within reach that I might need to access. - I plan to do a blog post on how I’ve created my bed space to be accessible for me.

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  My mushroom lamp

  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.
• 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.

Disability services: Specavers home eye test

I’ve shared in a previous blog post about disability services I use and would recommend and I wanted to add about Specsavers home eye tests to this list.

Recently I had a home eye test and I wanted to leave a review and also make people aware that this service is available. Having an eye test at home is something I’ve had before in the past but it was quite a while ago. I recently chose to have my eye test at home again because of the lack of accessibility at my two local Specsavers - (I wanted to go with Specavers specifically as I needed new glasses and I wanted to get Cath Kidston frames which only Specsavers do). As well with Specsavers offering home eye tests meant that it was much easier for me to get my eyes tested as I was well overdue and trying to find a wheelchair accessible opticians vs going for a home eye test is one less task for me. The alternative would be having to consider things like disabled parking plus access in the opticians and then once I have my prescription head to Specsavers to get my Cath Kidston frames which all of that as you can imagine is a total headache compared to a Specavers home eye test. 

It’s also important to look after your eyes and have them tested regularly and just as important as seeing your dentist or GP or consultant.

The eye test

 It was really convenient, I was able to ask for an afternoon appointment to work around when I’m free after my PA (carer) had finished work. They don’t specify a time so there was a bit of waiting around for them to turn up but they did call me to say when they were on their way to me and would be with me soon.

Once they arrive they are able to set up wherever you’d be most comfortable so in a chair or staying sat in your wheelchair or you can even be in bed if needed for some people.

They started by taking a medical history and asking about how my vision has been since my last eye test and any problems I’ve been experiencing. They also ask if I was still under the hospital eye clinic - they check this especially if your illness affects your vision. I was also asked other questions about how my vision has been since my last eye test.

You don’t get the fully comprehensive test that you’d get in store as they can’t bring every piece of equipment with them. However they did have a small gadget to measure the pressure in my eyes and an opthalmascope to look into the back of my eyes.

They used an iPad for the letter board and set that up and used the traditional lens changing glasses and did a traditional eye test asking me the usual questions over and over like if one looks better than two, or three looks better than four, or whether I could see the letters better with or without etc. as well as asking what letters could be read on what line. They also checked my prism for my double vision and asked whether my double vision goes side-to-side or over the top - for me it the former.

I was also shown on the iPad paragraphs of text in different font sizes and asked what text size I could comfortably read. They slightly altered the lenses and asked if I could read and font smaller than before or not.

Choosing my glasses

 They’d brought along with them a big case of glasses to look at. That’s one downside to home eye tests, you don’t have a shop full of frames to choose from and you’re limited on what frames they bring along with them especially as they have to bring a selection that will suit a range of ages and styles for a wide variety of people. I did like some of the frames in the box but I really wanted to try both the frames I’d asked for. I’d asked for two particular Cath Kidston frames to be bought along that I’d seen and liked on the Specsavers website but only one had been brought so they came back for a second time with both frames for me. The mixup only happened because my appointment had been rescheduled but usually the frames you ask to be brought are brought along.

Tip: You can look on the Specsavers website like I did and ask for specific frames to be brought along and most of the time they are brought which is what I did. 

If there aren’t any frames you like the home eye test team can come back out to you with more frames to look at until you find something that you like. I found the Specsavers staff good at helping me choose my frames and what suited me and which frames I should have as a clear pair and which as my dark tinted pair. You can still add things like anti-glare to your glasses and coloured tints like you can if you went into the Specsavers store.

Getting my glasses delivered and fitted

Once I chose my glasses I had to wait for them to be made. When they were ready the Specsavers team arranged a suitable time to come round to deliver and fit my glasses.

When the lady came she showed me my glasses to make sure I was happy with them and then she fitted them. My frames didn’t need a heat machine she just needed to bend them to fit them and she ensured they felt comfortable and fitted well. She gave me the number to call should I need them to come out again to adjust the fit as she said they can change over the next few weeks as I wear them more. It’s free for them to back out to me just like the rest of the service I’ve received from my home visits.

Eligibility and funding 

You do have to be eligible for home eye tests; this could be because of a physical disability including access issues such as wheelchair access mor a mental illness such as anxiety disorders or due to health issues in old age - you can be any age to have a home eye test if you’re eligible. 

They also go through funding eligibility such as whether you’re eligible for free NHS eye tests and if you do buy glasses what components are funded and what you have to pay. So for me when I bought my glasses I had an NHS voucher to part-pay for my glasses and I also had funding to pay for the prisms in each eye of my glasses; the rest of the bill for the frames, anti-glare coating and darker tint I had to pay for myself.

You can pay in different ways; I paid on their card machine which I found to have a very accessible screen.

They also brought mini printers with them to print off my prescription and also my receipt once I’d chosen and bought my glasses.

If you’re not eligible you can still have a home eye test for a fee of £

Other things

 If needed they can refer people to their GP or to the hospital for further consultation. In my case because my health conditions affect my vision they put me down as needing another eye test in a year’s time just to keep a check on any changes to my vision.

The staff also all carry ID so if you’re unsure you can always ask to check their ID at the door before you let them in. I found the staff more than happy for me to check their ID.

Final thoughts

All-in-all it’s a service I’d highly recommend if accessing an traditional opticians would be difficult for you for whatever reason, whether that be poor physical access to physically get into an opticians, or due to being housebound or bed bound because of physical or if you have mental health illness such as an anxiety disorder. It was easy and convenient to book my appointment and buy my new glasses and to prove my eligibility for a home eye test. It also meant that my eyes got tested rather than going without especially as my illness does affect my vision.

It was also good that they were able to come back out to me with both of the frames I had an interest in.

The staff were friendly and helpful and willing to go with whatever was easiest for me. I felt like I got a good service throughout and a comprehensive eye test, as well as the service I got when choosing my new glasses both when I was looking at the frames brought along at my original eye test and when they came back out to me.

The service was fully free at no extra cost for all the times they came out to me which was great and much more accessible for me as well - it was less exhausting, I didn’t have to worry about access for my wheelchair and Batec as well as disabled parking, my hypersensitivity to noise, accessible toilets and more.

I also found the whole service more person centred and it was more laid back and met my needs better. Every visit was in the comfort of my own home and I didn’t need to worry about anything like in the middle of my eye test I was able to go to my bathroom. The staff I all met were all so friendly and accommodating and professional and knowledgeable. I definitely know I’ll be having my next eye at home again.

What I put in my hospital ‘go bag’

I keep a bag hung near the front door which is my my hospital ‘go bag’; it’s a pre-packed bag of essentials should I ever go to hospital in an emergency such as via ambulance or when I go to hospital which might result in an emergency admission. It’s easy for someone to grab for me like a paramedic or family member and it’s easy to spot as well. I also get someone to get my phone and Medical Passport to take with me as well - my Medical Passport is also quite important to bring along into hospital with me too, plus it helps me communicate my medical needs.

So, what do I keep in it?

Medication

The first thing that is in is inside is a clear toiletries bag of medication. I’ve tried to put in as much of my regular medication as possible that is still in the pill packets as this is the only way they can be written up in hospital. If I took my medication tray it can’t be used as individual medication can’t be accurately identified from one pill to the other. Sometimes it’s allowed though but not always so I always try to take pill packets so I can have my medication until the hospital pharmacy can provide my medication. I put my medication in a clear bag so it can be seen that it contains medication; also inside I keep an up-to-date list from my prescription sheet of what I’m currently prescribed so they know what to prescribe me in terms of my regular medications.

Toiletries 

I have a small bag of toiletries with just the essentials including:

• Pack of travel size Fresh Wipes - these wash wipes are great to take into hospital and make it so much easier for the staff to help me freshen up in bed when I don’t need a full-on wash with a bowl of water, shower gel and a flannel 
• I also have a packet of sterile wet wipes that I get with my medical supplies order, I use these to clean around my tube site, I’ve also got some wipes for sanitising my tube. I’ve also put in a tubie pad set as well so I can put a fresh set on for hygiene.
• TangleTeezer hairbrush and a hair tie
• Mini dry shampoo 
• Toothbrush and travel size toothpaste 
• Deodorant 
• I also use the sterile wet wipes to wash my face so I’ve got a travel tub of moisturiser to put on so I can freshen my face up as I find hospital air stuffy and it dries my skin out
• Packet of tissues and hand sanitiser - both always helpful especially as I can’t use the hospital alcohol based hand sanitiser 

I try to just pack the essentials as I don’t know how long I’ll be in hospital for. The main things I haven’t been able to pack in my toiletries bag is my barrier creams as I don’t have room for them all and I don’t know how long I’ll be in hospital for and if I am admitted I can get someone to pack them along with everything else I need like pyjamas etc. and have them brought to me.

Other essentials I’ve packed

In the front pocket of my bag I’ve packed a few other essentials:

• My power bank that can recharge my phone multiple times plus cables to got with it to charge my phone and the power bank itself 
• Then in a purse I made I keep:
• Two types of ear plugs: the first pair are complete high rating noise cancellation earplugs and the other pair blocks out background noise but still allows me to hear conversations while wearing them
• Noise cancelling earbuds - when I’m in hospital I just constantly listen to lots of books as I’m usually too unwell to do anything else to occupy myself
• A £10 note for ‘just in case’
• I also have a small book of communication cards that helps speak for me as sometimes my speech can be affected and on occasions I’m unable to verbally communicate. Without my book it can be very difficult staff from experience don’t always have the ability to understand why I can’t [or to them won’t] talk, sometimes staff are good and will allow me to communicate by blinking or squeezing their hand one for yes two for no, or writing letters on their hand - however it would be a lot easier if more people knew BSL so I could finger spell and use Sign Supported English (SSE) like I normally do at home when my speech is being challenging.
• One card gives my personal information: name, date of birth, emergency contact and brief medical information including the fact I don’t like cannulas in my hand. I also have cards explaining my main medical conditions and a card saying that my speech is challenging for me at the moment and to go with that a yes/no card.

I did think about packing some medical supplies especially drainage bags but my bag is only a mini rucksack and there is no room left in it at all and I usually expect and hope that the hospital to have what I need that will be suitable. If not I can get someone to pack what I need from home.

I’ve put a tag on so my cables are labelled as to what they are then on the reverse they have my name and mobile number. My other possessions are labelled with my name and mobile number too, just in case the get lost and if so they can be returned to me. I’ve had things go missing before usually when I’m being moved from one bed or ward to another so I’ve found it helpful to tag my positions. 

I find it really helpful to have this bag to use the essentials in there to take with me to Emergency Department visits that won’t result in a potential admission but I know that in there I’ve got some things I’ll need while I’m at the ED which I can pop back in once I get home. Such as taking my power bank, noise cancelling earplugs, communication cards etc. Once I’m home I can put them back in the bag ready to go. 

I think the only thing missing from my bag that I need to add to it is a luggage tag to identify it as my bag so that’s my next thing to add to it just in case it goes missing when I’m being moved beds/wards or I’m separated from my bag such as if I’m being taken for a scan.

Despite all being prepared with my bag I always hope to not need it, but it’s good to be prepared and it makes it a lot easier as I don’t have to get someone running around packing things for me while the paramedics are ready to take me off to to hospital.

Finally on my phone I keep a list of what I need additionally packing for me should I be admitted into hospital, I like to be prepared and having this list means that whoever is packing for me will pack everything I need and nothing will get forgotten.