Adapting a Home for Disabled Family Members

When I moved into my home five years ago it already had most of the requirements for a disabled person because it was a newly built house. I had no idea that just two years later I would be so grateful for these. If my house had been older I may have had to make a lot of changes. This post is a guide to what changes may need to be made should a loved one become disabled.

Whether a disability is borne out of a chronic illness or unforeseen trauma, living with one isn’t easy. Many disabilities impair one’s capacity to get around, which is why it’s important for family members and loved ones to create an environment suitable for accommodating their unique needs. And although many new homes are designed to aid persons with disabilities, often, older homes need to be retrofit to do the same.

That said, if you have a loved one or family member with a disability, here are a few things you can do to make your house more comfortable and inviting for them: 

Major Renovations


1. Change your flooring

photograph of a hallway with wooden floors and doors

If you have marble floors or a carpeted hallway, it might be good to replace them with hardwood floors or ceramic tiles. These different types of flooring provide traction for wheelchairs, not to mention being easy to clean.If you don’t have enough money to re-floor your property, The Spruce suggests covering it with linoleum instead. Aside from being resistant to water and stains, it doesn’t hold on to dust and is good for wheelchairs. We have wood effect linoleum in our hallway and people often believe it’s real wood. It’s great for my wheelchair and makes exiting the house easy.

2. Widen hallways and doors

photo of a white dining room with a table and chairs and a sliding doorway

Your home’s doors need to be at least 36 inches wide for standard-size wheelchairs to fit through. A carpenter can usually complete this job within a day, as it is pretty straightforward. 

However, if you want to make the adjustments yourself, you can install doors with swing-away hinges. You can also opt for dividers and sliding doors, which not only make access easier, but they can also make your home look more open and spacious. From the selection of internal doors on Screwfix, it is evident that your choice can impact the overall look of an entire room or home. This is why when choosing new doors, you need to make sure they are functional, as well as beautiful. 

3. Add a downstairs toilet

photograph of a bathroom with shower, toilet and sink unit

If you find installing wheelchair platforms, stair lifts, and wheelchair climbers too expensive, you can renovate your home to make another bedroom and bathroom on the ground floor for your disable relative to sleep. This way, you won’t need to worry about how they will get up and down the stairs regularly.

Minor Renovations


1. Change door and cabinet knobs

photograph of a door handle on a white door

Door knobs can be difficult to use if they have limited mobility in their wrists or hands. It’s better to use door handles that will allow your doors to be unlocked and opened using only one hand. Locks, bolts, chains, and peepholes should be placed between three to four feet from the floor, so they can easily reach it.

2. Add accessible accessories to your bathroom

Photograph of a bathroom with mirrors,

Showering and sitting on the toilet can be challenging, especially if they have restricted in terms of their movement. Installing handy bathroom accessories like shower seats and sturdy handrails will be very helpful—and are easy to blend in with your bathroom’s overall design. If you have more resources, you can follow the designs featured on the Telegraph and overhaul your bathroom to turn it into a wet room. This means that it will have no moving parts or doors that need to be opened or closed. It’ll be turned into one seamless room that can easily be accessed even if your family member is in a wheelchair or walker.

3. Add sufficient lighting

photo of a living area with sofas and lots of lighting on the ceiling.

Whether they are using a walker or a wheelchair, it’s important to make sure every nook and cranny of your home — including the stairs, rooms, and hallways — is well-lit. An electrical technician can help you improve your home’s lighting and make sure you leave no dark corners. Long hallways should have light switches at both ends and the switches should be reachable from a wheelchair.

Don’t forget to pay attention to your driveway and garage, too. Garden paths need to be wide enough for wheelchair access and the paving should be wheelchair- and walker-friendly, Lushome notes that some of the most important considerations you need to look at when it comes to your driveway are safety, access, drainage, and aesthetics. Once you’ve crossed out all these off your list, your home will be ready for any family member with a disability.

Overall, minor and major home improvement projects for the benefit of a disabled person are a welcome change. And while you’re at it, why not take into account your loved one’s style and preferences? For ideas on choosing a theme, have a look at our guide here on Raisie Bay

What it is like Living with a Chronic Illness

I can’t speak for everyone because we are all different. But living with a chronic illness is often misunderstood.

Imagine that the next time you get one of those horrid colds that knock you off your feet, disturb your sleep and make you feel like crap for a few days.

Then you get better and go back to normal, glad that it’s over, you survived intact.

Now imagine you don’t get better and it just carries on like that for weeks on end. Or maybe it gets better for a while but you know it will be back again in a week or two. That’s what living with a chronic illness is like.

The Spoon Theory

six silver spoons

A lot of people refer to the Spoon theory. When you are not well you can imagine a day where you wake up with a number of spoons. Then after every activity you take away a spoon until there are none left. Sometimes they can last all day and you may even have an extra one for the next day. But you can also have days where the spoons get spent very quickly and you are left unable to do anything else for the rest of the day. You can even overdo things one day, leaving you with fewer spoons for the next day.

A lot of chronically ill people refer to themselves as spoonies, I am a spoonie.

My Story

Three years ago I was taken ill quite suddenly. I don’t know what caused it but I’ve learnt since that shocks can trigger your body into attacking itself. And I’d had a shock when my Father-in-Law had suddenly dropped dead in front of me with a heart attack,while I was taking him for a hospital appointment.

Two days later I was back in the same hospital myself, virtually paralysed. Totally numb. I was originally diagnosed with Transverse Myelitis and told I would recover within a couple of months. A year later I was diagnosed with Stiff Person Syndrome plus PERM and told that recovery was unlikely.

Things I have Learned Since I Have Had a Chronic Illness

Life with a chronic illness is hard, harder than you can imagine.

Life is also difficult for loved ones, they have to watch you suffer and see someone they depended on become someone they have to look after instead.

It’s difficult to carry on with a normal lifestyle, even if you are well enough to continue working you will need to take lots of time off sick.

It’s hard being a Mum, especially when your child needs you and you can’t be there for them.

You’re mental health deteriorates, you may start out feeling positive that you can beat the illness, but as time goes by you feel like it’s just not worth living any more.

People don’t like to be around sick people.

You find that people just don’t understand how you can be ill so often.

People stop asking how you are.

You stop being invited to events because people just assume you won’t be well enough to go.

It’s difficult to plan for anything because you don’t know if you will be well enough.

A lot of partners cannot cope with life with a chronically ill person and decide to leave them.

Staying Positive

It’s amazing what a difference having a positive attitude can have. I am not always positive, but when I pull myself out of my self-pity and hold my head up I feel so much better.

Life is not always easy, not for anyone whether you have a chronic illness or not. But, it’s up to you how you approach life, how you deal with it, that makes things better. I may not find any relief from my pain, but it certainly makes me feel better when I can laugh and have fun with friends and family.

I’ve just had an awful weekend, I’m not sure if it was side effects from my infusions, or related to something else but I really was ill. I could barely do anything but watch television. My family just left me to it. But there is only so much I can take, I will push myself to do things, not give in to the pain, probably even make myself feel worse in the end. But, in my mind I want to be the winner, not the giver upper!

There has to be a balance though. Sometimes when you are rock bottom it’s okay to admit it and give in, so long as you are willing to fight for it when you are ready. I gave in, I watched 3 hours of Friends and 4 hours of Doctor Who over the weekend. I’d had enough by then, enough lying around and giving in. But I’d also allowed myself to wallow and rest. It was time to fight.

One day I know the fight will be gone, but until then I’m going to polish my spoons and keep on keeping on.

courage is not having the strength to go on, i'ts going on when you don't have the strength
Debs Random Writings
Twin Mummy and Daddy

The Little Things That Help

Being faced suddenly with a disability can be a daunting experience but there are things that can help.

a wheelchair sign on the grass showing the way to a step free route

Photo by Yomex Owo on Unsplash

Nearly three years ago now I was admitted to hospital after becoming suddenly paralysed for apparently no reason. Over the two weeks in hospital with treatment and physio I regained some senses and learned to walk a little. When your nervous system gives up on you no longer have communication between your brain and the rest of your body. Putting one foot in front of the other becomes a confusing task. 

When it was time for me to come home they would not let me go until they knew my home was safe enough. That meant that someone had to come out and visit my home and then state what aids I would need to be able to get around once home. Despite this being horrifying at the time (‘I’m not using a zimmer frame, What do you think I am, and old lady?’) Nearly three years on I have found these aids invaluable for my safety, my sanity and my independence.

Aids

So what were these aids? First up was the stairs, we had a fancy banister on one side but I would now need two, so a second handrail was fitted. The second rail covers every part of the left hand site of the stairs, which is the wall side. I also needed to get around so I was provided with rollator frames for both downstairs and upstairs. These are basically your normal zimmer frames but with wheels on the front so you can push them rather than lift them while walking. I called mine Zelda1 and Zelda2. I now only use a Zelda if I’m feeling really unwell, I tend to use my walking sticks more.

Bathroom

Then there was the bathroom. Thankfully we have a low access shower in one of our bathrooms so I was provided with a chair to sit on while showering. It’s not exactly the best way to shower so I prefer to use a bar instead and stand. My dream is to have a proper wet room, I’m sure the kids would like one too as when they shower most of the water ends up on the floor rather than in the shower basin. Around the toilets we have hand rails, they can be moved but I’m thinking of replacing them with drop down rails which are less obtrusive. I know I’m disabled and appreciate the aids, but it would be nicer for guests not to have to put up with them too.

Kitchen

In the kitchen I have a stool. It’s high enough for me to reach the worktop, cooker and sink, but it doesn’t move around so I only sit if I’m tired or can’t stand anymore. It’s handy for when I’m chopping up vegetables or mixing a cake, but I have to make sure I have everything in my reach. My favourite kitchen gadget is my trolley.  It has two trays and is on wheels, I can push it around and carry twice as much as usual, probably twice as much as you. Not only is it useful but it’s a walking aid as well! I can use it to cart things around the kitchen, or move things from the kitchen to the living room and vice versa. I think every home should have one and I think it’s looks the least like a disability aid.

Getting Out.

I don’t walk much outside, basically because I can’t. Uneven surfaces are almost impossible for me, even with walking aids. I can’t walk on slopes either ascending or descending. And I can’t walk more than a few metres without freezing. If I am familiar with a place I will walk a little with my sticks or crutches, but I am so, so slow. Honestly a tortoise would be quicker, or maybe even a snail.

So, I have a wheelchair, a power chair in fact which is now a little battered and bruised after our car accident. At first I had a manual chair but I didn’t have the upper body strength to push myself far and had to depend on someone to push me. It’s not a nice experience, particularly if you have someone who has been a parent push you, because they tend to treat a wheelchair like a pushchair. When they stop to speak to someone they’ll push you past so they are talking behind your back. Or in a shop you’ll end up being pushed passed the cashier so you can’t interact with them.

A power chair gives you back some more independence, you are in control again. I don’t know what I’d do without mine. At first I thought I would get better and that I would only need the wheelchair for a short while, but now I have little hope of ever being able to walk again so I tend to look at wheelchairs like someone would look at cars. There is always something better I crave. For the time being though, I have to be satisfied and as long as I can get from A to B then I’m happy. Sometimes getting from A to B is not easy and it’s easy to start thinking that it’s better not to go out at all, but then I think of all the wheelchair users that have been in their chairs all their lives and count my blessings. 

a power chair from Careco
My wheelchair

And So to Bed

So far I don’t have too many aids at bedtime. All I have is a frame attached to the bed, kind of like the ones you get your toddler to stop them falling out. But mine is metal and I mostly use it to grab on to when I want to move around or get out of bed. 

Sometimes I still find it hard to believe that I am disabled, especially as it happened so suddenly and without being in an accident. I have Stiff Person Syndrome which affects around one person in every million world wide. My type of Stiff person also comes with a few extra surprises, Progressive Enchephamyelitis with Rigidity and Myoclonus, or PERM for short. On October 25th it is the Stiff Person Syndrome awareness day. It’s important to raise awareness, as sufferers we are often faced with blank faces when trying to explain to any medics we encounter what is wrong with us. There is little research being done, and no-one knows the best way to treat us. With awareness we hope to change this and give future generations the chance of proper treatment or even a cure. 

This is a collaborative post but all words, thoughts and opinions are entirely my own.

My Story in the Paper

These days it’s pretty easy to get your story in the news, just go online and submit it and if they like it they will use it. 

It’s a little hard on the self conscious though. Do you really want everyone to know your true story? Will it be published correctly? Will they change it to suit? What will people think?

My Story

Recently, I was approached to tell my story. I was asked, I didn’t put it through my self. I had several telephone conversations with the lady and after she had written my story she read it back to me. I was happy, everything seemed just as I had told.

Then my story was published on the Daily Mail online and will be appearing in a woman’s magazine in print. There was no turning back now. It took me three days to tell anyone, even my husband. Then he posted it on Facebook.

My reaction was to cringe, at the headlines, at the photos. Even though I’d shared the photos before, the thought of more people seeing them made me squirm. The headline made me squirm too.

The Mother of Three that is turning into a ‘Human Statue.’

When the condition, Stiff Person Syndrome, was first discovered, it was found that a common feature was a stiffness that turned it’s sufferers into statues. This seems to have stuck throughout time, although most of us with Stiff Person Syndrome do not see it like this anymore. Many medications have been found that can prevent the condition from progressing to this stage, and some have even found their condition goes into remission. Still, it sounds dramatic doesn’t it?

Many people with Stiff Person Syndrome have spasms which can stiffen parts or all of their body. When I have a spasm I do go stiff, but it’s not board like, I often tend to curl up and I’m unable to straighten again until the spasm passes. This can last anything from a minute to 20 minutes. I also have smaller spasms that affect my feet, hands or legs, sending them stiff. But eventually they relax again.

I do have stiff muscles that never relax in my back, legs and feet. These are what contribute to my inability to walk.

I have to say though, they did manage to stick to the truth, the things I told them. There was a little sensationalism thanks to the highlighted headlines, not anything I’d not said.

The Reason for Sharing.

My main reason for sharing my story is to raise awareness. I’ve recently become part of a small group of Stiff Person Syndrome sufferers that are trying to make our condition more widely known. Very few doctors or medical professionals have heard of the condition. Even fewer general members of the public. With awareness comes better diagnosis and treatment. And maybe even one day a cure.

I’m doing a little research myself and I’ve already noticed that those with paroneoplastic Stiff Person Syndrome have responded to a particular chemotherapy drug. SPS can be a side effect of cancer, and when the cancer is treated, the symptoms of SPS are resolved too. Maybe, in the future, the drug could be tested on other SPS patients to see if it makes their symptoms go away too. It’s just my theory for now, but who knows what could happen. 

So, as cringy as I find it, my story needs to be told, as do many others. One day maybe lots of people will have heard of SPS and treatment will become readily available. 

Reactions to My Story

I was surprised at how little many of my friends knew about my story and my condition. I guess, I must not overshare as I’d originally thought (or was led to believe.) I don’t want sympathy, but what about my family? Maybe they deserve a little sympathy for what they are going through. I hate my children seeing me sick, I’ve become an expert at hiding my pain and my feelings. My husband is more observant and is constantly asking me how I am doing. It’s good to know that people care, but I also find it awkward. 

Now that I have been forced to look at the bigger picture though, my feelings have been put aside. Yes, I may feel embarrassed but if my story helps to raise awareness then I will continue to tell it for as long as I am able.

Maybe I should be more honest from now on. I was slated for it recently and it really made me hide back in my shell. But now I don’t care. So what if a few people decide to mock me or ignore me, there is a bigger picture here that I am part of. 

So, here goes, the link to the first article about me as it appears online.

Birmingham Woman is Turning Into a ‘Human Statue’

Lucy At Home UK parenting blogger

Two and a Half Years (and a couple of weeks)

In the Beginning

Two and a half years and a couple of weeks ago I woke up with pins and needles and ended up in hospital paralysed. It seemingly came from nowhere, but I now believe I did have hints that something was happening with my body.

After two weeks in hospital I came home with a zimmer frame and the promise that after six weeks physio therapy I would be fine. Nine months later when I saw my consultant next I turned up in a wheelchair, things were not fine.

I’d had an MRI in hospital which hadn’t told them much about what was wrong with me, so my consultant did blood tests, muscle tests and nerve tests and I ended up with a diagnosis of Stiff Person Syndrome, or a specific type of SPS known as Progressive Encephemyelitis with Rigidity and Myoclonus, or PERM.

So for the first year I was expecting to get well, but exactly a year after my hospital admission I found out that not only was I not going to recover, but my illness was progressive.

Year Two

I am still in  a wheelchair although I can walk for short periods with aids. I walk around my home but I always have something to hold on to. I don’t walk outside very often, I’ve tried sticks, a rollator (walker with wheels) and crutches. They all help with balance but nothing can stop the pain and fatigue. I get so far and my body just doesn’t want to move any further.

I take a cocktail of drugs every day, but the pain is always there, I may be able to dull it, but it never goes away. Sometimes my body freezes up into a complete spasm. Sometimes I can’t swallow properly, sometimes I can’t breath properly, it’s unrelenting.

Apart from the drugs I’ve had intravenous steroids which helped in the first instance, but did little to help after the second round. I have regular doses of Intravenous Immunoglobulins (IVIG) but it doesn’t help much. I get reduced spasms and it helps the myoclonus (jerking) but it’s not a miracle cure as I’d first hoped it would be.

Parts of my body are always stiff, parts are always in pain, parts always have pins and needles or neurological pain. It affects my sleep, it affect my life, each and every day.

I also have startle reflex, so a loud noise or something to make me jump, or even an intense emotion can make me go stiff, if I’m standing I may fall, if I’m sitting or lying, it just hurts.

I also have vertigo which can come at any time and last anything from minute to hours. This makes me feel like I’ve just downed a bottle of vodka, but not in a good way. Double vision, dizziness, loss of balance, the rotten stuff.

I could go on and on with symptoms but I don’t want to bore you.

Year Three

Yes, I’m half way through my third year, my youngest can’t even remember the times when I could walk. When I used to chase him around the school playground while waiting for my older girls to come out of school.

People get fed up of you when you are sick for  a long time.  At first it’s concern;

“How are you?”

“Are you feeling any better?”

“When’s your next hospital appointment?”

“How did you get on at hospital?”

Then they get bored;

“Are you not well yet?”

“I thought you’d be walking again by now.”

I’ve even been accused of moaning too much and not getting on enjoying my life.

I’ve even been accused of competing with others for attention.

Yes, people have had enough of me and my sickness.

Do they not think that it would be my greatest joy to announce that I’ve had a treatment that has worked, that my pain has gone and I can walk again? No, for some reason I’m just a miserable old cow because I haven’t gotten any better.

The Future

Despite what some people think of me I have always been a positive person and I’ve approached each treatment with excitement and determination. Yes, it does get me down when it doesn’t work, I don’t think there is anyone who wouldn’t feel the same. I do get into some very dark places sometimes when I can see is the pain and disability and the hurt I cause others. Sometimes I think my family would be better off without me.

Then I bounce back and fill my life with happy things. I start projects that I can get excited about, something to look forward too. Plans, future plans. Even if things don’t get better I can cope if they stay the same. If I get worse then I’ll deal with that too, one day at a time.

I am working with some other Stiff Person Syndrome sufferers to gain awareness for our condition and hopefully trigger more research into diagnosis, treatments and even cures. I am reading studies, finding out all I can and most importantly, learning from others who are living with it. It seems daunting the amount of research I am doing, but it gives me a purpose and hope.

I have also decided on what I want to ask my consultant when I next see him. I’ve found out that there is a drug out there that have helped people just like me to get back some life. I don’t know if he will approve it but I’m going to ask all the same. Also, I will give up the IVIG, yes, it helps me a little but I know it’s in short supply and others gain more from it than me.

If you’ve read this far, then thank you, I know there are people out there who genuinely care. Just as I know I will never give up hoping to get well again.

 

 

A little Note About Positive Reviews on Raisie Bay

A little Note About Positive Reviews on Raisie Bay

Some people only write reviews when things go wrong with products, which is good because it lets people know that there could be potential problems. I’ve also seen negative feedback with say things like, I had to return this item because the colour did not suit me…is this useful?

I write reviews on most items I buy because I like to give genuine feedback. If I have a genuine problem with a product I will write my review in the appropriate place.

I write reviews on my blog too, but they are mostly positive. Why? Because I only write reviews for the things I’ve loved. If I don’t love them I let the person who sent me them know with details why and then let them decided if they would rather me write a negative review or not write one at all. It’s always the latter.

This is my blog, my place and I’ll let you know about the things I love. If you want to find out what other people have hated about the product then you will need to look elsewhere.

My reviews may all be positive, but they are still genuine.