Disability A-Z: I is for Intracranial Pressure, Intracranial Pressure Monitor, Involuntary Movements Intelligence Ignorance and Imagination

I was a letter I was thinking about a lot, and one for which I was wondering what themes to pick. I knew there was going to be some repitition in this ost, but where awareness and knowledge is concerned, repitition is a good thing.

In my H post, I talked about my hydrocephalus and how hydrocephalus is an increase in brain pressure. Apart from my shunt, I have also had an intracranial pressure monitor. This is a small monitor which is implanted in the skull to check for raised pressure. It was suggested for me after I was getting frequent and severe headaches despite my shunt. The monitor meant I had to have yet another surgery and it has left me without part of my skull. I’ll talk more about that in my S post.

Cerebral Palsy has caused lots of things in my body and one of those is involuntary movements. My feet will move involuntarily on my wheelchair footrests and I have hand tremors (more about those in my T post). Any part of my body can move involuntarily, and I can hurt myself. My eyes move constantly in an involuntary way because of nystagmus (more about that in my N post).

I have met people who question my intelligrnce and start talking to me slowly or as if I’m a baby or who will talk to the person next to me instead of me. I do my best to get them to listen to me, but sometimes they don’t. I feel it’s their problem if they don’t want me to. Ignorance is something I really don’t like. If you’ve been reading this A-Z or my blog so far, you’ll know that I always aim to reduce the amount of ignorance there is around people’s knowledge of CP, Hydrocephalus visual impairments and other disabilities.

Ignorance, and saying people are ignorant about something, is not meant as an insult, but rather as an opportunity for the person to become more aware and accepting of those of us with disabilities.

One thing that has helped me in life is my imagination. From an early age, I felt I was a dreamer and had a good imagination. I used this when I tried to meet and get along with people, to defend myself from bullies, and to try to solve problems in life. I used it with schoolwork and university assignments and later with novel and short story drafts. I still have to use it a lot. I’m proud of my good imagination as it makes life interesting and can help when there’s an extra challenge in the way, which there often is, not just because of my disabilities but with life in general. Improving my ability to use my imagination in the way I think is right no matter what anyone says is how I overcame my problems with self confidence. More about my journey with those in my S post.

International Day of People with Disabilities 2022

Today is the International Day of People with Disabilities. This year, the theme is:

Transformative solutions for inclusive development: the role of innovation in fuelling an accessible and equitable world.

The transformative solutions in my life so far are:

My shunts to help hydrocephalus. It will never cease to amaze me how innovative these are If I didn’t have them, I wouldn’t be here today. There’s always a risk they will fail or malfunction and I know I’ve had experience of this happening repeatedly during the first 11 years of my life. Every day they don’t is a gift, as when they do fail or malfunction I am seriously ill and hospitalized for long periods.

My wheelchair which has a lot of things to help me already (tilt, recline and seat riser as well as legrests which are all electrically controlled and help with positioning and activities). Further innovations are the alternative options that can be added onto it.

Positioning belts, harnesses and foot straps.

Equipment such as an electric hoist/ Hoyer lift, an adjustable bed and shower wheelchair.

My computer and iPad, which can be controlled with just my voice.

Voice recognition software and dictation programs which allow me to produce novel drafts on my own and helped me produce schoolwork and university assignments.

I like the way that innovation to help those of us with disabilities is always occurring, but feel that to be truly accessible. the innovative products need to be priced so people can afford them more easily. This phenomenon is known as the disability price tag, and is something I’ll talk about in another post.

Innovation must not just be limited to mobility and assistive technology products, it must be available in all areas of life, from housing to healthcare access and beyond.

I stil feel the world has a long way to go until it is truly accessible and equitable. Even if progress is made in every area of life a person may need, what really needs to change are attitudes towards people with disabilities. Only then will true access and equality have been achieved. This is why I raise awareness of my disabilities, as people need to know more to understand more and be more accepting and inclusive of those of us with disabilities.

I have had to face a lot of misunderstanding and ignorance in my life surrounding my disabilities, and I still do, but when someone understands and helps, it’s a great thing.

I hope and pray that I’ll experience this in my lifetime, but for now I’m still fighting, and will never stop doing so.

Find out more about the International Day of People with Disabilities 2022 here:


Happy World Prematurity Day 2022

Today is World Prematurity Day and I’ve been spreading awareness about it for some years. I was born 11 weeks premature, and weighed 2 lb 6 oz. I was born with my identical twin sister Natalie in Kingston-Upon-Thames, an area of south London in England.

Every time it’s world prematurity day, I feel happy to be here given what I went through at birth. Natalie went through the same, but she passed away.

Today, I imagine us, tiny babies fighting for our lives in the NICU at first Kingston Hospital and then Queen Charlotte Maternity Hospital.

Our births were spontaneous, and the fact we were two babies instead of one was unexpected. I am the baby who was the “surprise”.

The consequences of prematurity for Natalie and I were many:

We were in a very poor condition when we were born.

We weren’t breathing at all and so went straight on life support.

We had heart and lung complications, and our lungs collapsed.

Our hearts stopped on Christmas Day and we had to be resuscitated and baptised in an emergency service.

Natalie’s heart stopped again and the further consequences of prematurity for her were kidney failure and organ failure until she lost her fight for life on New Year’s Eve 1981.

The consequences of prematurity for me were more related to my brain, muscles, and ability to move.

I had severe (grade 4) brain bleeds on both sides of my brain which caused swelling and hydrocephalus and Cerebral Palsy. I had many eye infections in the form of conjuntivitis.

I have often asked myself how the consequences of prematurity would have shown themselves in Natalie had she survived. It’s not really known, and the word most used in my family was “probably”, like she probably would have needed dialysis for her kidneys.

The theme for World Prematurity Day this year is a mother’s hug. I do know that my parents visited Natalie and I every day in hospital, and that we were in incubators and in the NICU. I’m not sure when we had our first hug or when we were allowed to be held for the first time. I have heard of skin to skin contact from the time a baby is born and the value of that to get a mother and baby bond.I think it’s a good therapy.

Here’s more information about World Prematurity Day this year. Purple is the awareness colour for prematurity and it’s my favourite colour.

Disability A-Z: H is for Hydrocephalus, Hemianopia and Head Control

TRIGGER WARNING: major brain surgery, unintentional vomiting, NG tubes IVs.


I was diagnosed with hydrocephalus when I was 2 weeks old. It was the result of my premature birth as well as severe grade 4 brain bleeds on both sides of my brain.

I have what’s called a shunt to control the increased cerebral spinal fluid since hydrocephalus means I can’t control it myself. I had my first shunt fitted at Great Ormond Street Hospital in London. I was very ill during the procedure, and what would have been quicker ended up taking five days. I needed a blood transfusion before it and NICU care afterwards. But…I survived.

There were some surgeries after this, and then some more. Here’s what I know about my surgeries and hydrocephalus symptoms:

Age 6: I was vomiting and lethargic and had headaches. The tubing in my neck was broken.A doctor said he thought it was the flu, but then realized it wasn’t.

Another surgery and I ended up with 2 shunts as it was deemed too risky to remove one of them which was later called “redundant” (not in use) as doctors feared my already very severe disabilities would become even more severe if the extremely delicate surgery to remove the shunt went wrong. The broken tubing in my neck was removed and a new VP shunt and tubing was connected.

Age 11: I had headaches and had an Intracranial Pressure (ICP ) monitor fitted for 24 hours, during which time I was lying on my back on the hospital bed, with my head taped to the pillow and was instructed not to move.Not moving is not easy with my hand tremors, involuntary movements, spasticity and startle reflex.

I was fed through an IV and the alarms on the machine would startle me day and night and keep me awake.

I ended up having to have surgery at this age, too. I remember a lot of things from this time. We lived in Wallingford in Oxfordshire, and the nearest hospitals were in Oxford. The hospital I was in most was The Radcliffe Infirmary, but when I was 11 I was in The John Radcliffe Hospital.

I’d been having headaches and so we went to see my neurologist. I’d been having nausea and vomiting and was not feeling great. My head was throbbing. I felt sleepy and lethargic. These symptoms were classic hallmarks for me and hydrocephalus problems. I’d go to sleep then wake around 2AM crying loudly because the increased intracranial pressure headaches were the worst I’d ever felt.

I still remember mum packing an overnight bag just in case. We went to see my neurologist, went back home.

I remember when the call came, how mum said “We have to go to the hospital.” So, back we went. I remember taking my Forever Friends soft toy (a brown rabbit with pink inside its ears). I also sometimes bought a white seal soft toy with me as I loved it’s jet-black eyes and soft white fur.

I still remember the sterile ward and the antiseptic hospital smell, how I’d try to hold the soft toy and how much the IV in the back of my hand hurt, and made the spasticity in my hands even worse. I still don’t like IVs for this reason. I didn’t like a lot of things in the hospital: the blood tests, the over-sweet bright orange medicine. Being poked and prodded by doctors and nurses. Not being able to eat and drink. Longing to eat and drink what I wanted. I knew the hospitals were’t far from the shopping area, and I wanted to go there or to the movies. The hospital was the last place I wanted to be.

I remember mum sleeping on a folding bed in my room, and a visit from my grandparents Patricia and Terrence. I remember how they were walking towards me and I wanted a hug but they couldn’t give me one because I had to be as still as possible to “help my brain adapt to the shunt”, as doctors and nurses said. I felt nervous and scared, like my body would reject the shunt.

I felt I wouldn’t ever get out of hospital. that I wouldn’t eat again or need a feeding tube in my stomach as there was some talk about that. NG tubes still scare me to this day, and I pray I never need another one. I thought a feeding tube was a better option as NG tubes made me gag and almost vomit when they were being put in and they had to be put back in every time I did vomit.

The nausea and vomiting from hydrocephalus was so bad I had a sign by my bed: NIL BY MOUTH. I’d been hospitalised enough for hydrocephalus by this time to know what that meant: that medical professionals could not give me ANYTHING to eat or drink and so I had food and medication through an IV.

I remember how even the smell of food would make me feel bad.

Not much could cheer me up, and I felt bored. I felt like I was the “complex case” one doctor said I was, and ike everyone wanted to study and observe me. I felt glad I didn’t have the deformed tall “steeple skull” I had when I was a baby. I still felt very different from everyone else. I felt like I was the only person in the world with spastic quadriplegic Cerebral Palsy, hydrocephalus and severe visual impairments. In my frustration, I’d get angry with the nurses, say everything wasn’t fair, and, I don’t know how I managed to pull out my IV on my own, but I did.

There were times when I’d cry and feel sorry for myself and feel uncomfortable because my muscles were too tight and were tighter still when I was exhausted or in pain. I didn’t like the extra dizziness and disorientation as my brain and body tried to get used to the new shunt.

The person who saw me for me was Ciro, a boy whose Italian family lived in Oxford. He had cancer, and he loved board games. I didn’t, but he’d want to play Connect 4.

I would use a scraping motion to try to get the red and yellow disks in my hand as a pincer grasp was too hard. I would spend more time dropping the disks (and startling myself when I did) then struggling to pick them up again. Ciro would pick them up, make a line after he asked where I wanted them and he’d let me win sometimes.

Then, one day, Ciro wasn’t there. I found out he’d passed away and I felt so sad.

I felt really self-conscious most of the time because I was the girl with CP and hydrocephalus and shunts in her brain. I was uncoordinated and struggled with strength, stamina, movement, posture and vision.

Now, I’m 40 years old, and happy to say I haven’t had a shunt surgery since I was 11. I have learned to self-advocate for hydrocephalus over the years. My shunt is still working well and has been for 29 years now.


I have a vision impairment called hemianopia which is complete blindness in half of both eyes and a severely reduced visual field in the rest of the eye. This causes difficulty focusing my eyes, difficulty with night vision, double vision, difficulty understanding what I’m seeing, vision that appears dimmed. I also move my body and head to try and see. It can also cause visual hallucinations. I’m registered legally blind because of this and my other visual impairments (nystagmus, strabismus and astigmatism).

Head control:

I didn’t have any until I was two years old, and my neck alternates between stiff and floppy. I have involuntary movements, spasms and pain in my neck. My head often ends up on my chest and I cannot put my head back to reach my headrest on my wheelchair whether I am sitting or lying in my wheelchair (when it’s tilted and reclined), so I need physical help to do that. Much of the time, my head feels heavy and I get headaches and dizziness easily from the effort of moving it.

I hope you enjoyed my H post.

Disability A-Z: G is for Good and Bad Moments, Glasses and Green for CP Awareness

We all have good and bad days, but have you ever wondered what mine are like? If you have, read on….

My spastic quadriplegic Cerebral Palsy makes me feel like my muscles are stuck in a vise and they aren’t attched to my body.

My hydrocephalus, even though I have shunts, still causes headaches and unpleasant sensations any time of day or night, like as if someone is pressing down on the sides of my head or there’s pressure on different areas of my scalp.

My vision impairments cause headaches and dizziness.

With my disabilities, a “good day” can easily turn into a “bad one”, depending on what my body decides to do, so instead of a “good” or “bad” day, I prefer to think of each day as a series of good and bad moments.

Good Moments:

In my good moments, I will have slept better. I won’t have as much of a headache or nausea when waking up. I will be smiling more. I will be more comfortable in my wheelchair. I will be warm instead of cold (my ability to maintain my body temperature is impaired, and I feel the cold easily. The medical term for this is “impaired thermorregulation”, and it can affect people with CP, spinal injuries, MS and more).

Bad Moments:

During these. I won’t have slept well, will have a headache, nausea and more aches when waking.

I will be more sensitive and possibly cry. I will want to nap more because the headache I had when I woke just won’t go, and I will feel almost hung over. I will be thinking “when can I go back to bed?”

Bad moments are when spasms won’t let my muscles relax despite Baclofen, Tramadol, exercises and massages or when seizures and involuntary movements make me injure myself. During these moments, I will lie in bed and hope to feel better. My muscles will be throbbing as well as have their usual stiffness.

Bad moments can have me experiencing acid reflux, nausea or vomiting because of fatigue

I’ve never wished for a new body, or a cure for my disabilities, but a bad moment will take all my energy and make me be in a bad mood scared and emotional.

Bad moments are when my husband wants to take me to the ER, or when we end up there.

I try to be as calm as possible in the bad moments when my body is not cooperating, Often, sleeping is the only way to feel better. Extreme fatigue will make me not be able to move, think or communicate.


Some people wonder when I first started wearing glasses.

My eye conditions were first noticed by doctors when I was in the NICU. I’d have recurrent bouts of conjunctivitis. When I was being held by a doctor there, they noticed that I couldn’t focus my eyes well or track things, and thought I’d probably need glasses. “Probably” was the word back then because they had no idea how a premature birth at 29 weeks, birth asphyxia and a long list of infections and a long time in the NICU on life support was going to manifest itself in my body.

They knew I had hydrocephalus, and extensive damage to the left and right sides of my brain the movement center and the occipital lobe (the area controlling vision).

They knew my body was too stiff and my reflexes were too quick. They knew about my CP.

They were right about the glasses, and at age 2 after a lot of testing, I had my first pair of glasses.

I’ve had so many different styles and colours of glasses over the years: dark red, magenta purple, and even multicolored ones with blue, pink turquoise and yellow frames when I was around 12 or 13. At that time, I was into the book series, The Babysitter’s Club by Ann M. Martin, and admired Claudia Kishi’s wild and wacky clothing style.

Now, the glasses I have have rectangular lenses with black half-frames. I remember when I was being helped to pick new glasses by the lady at the optician’s shop, and she said “how about these? You haven’t had any like these.” It was love at first sight.

All my lenses have broken or the frames have been bent. I sometimes fall asleep with my glasses still on while listening to an ebook or audiobook.

I’ve never had sunglasses that were right for me. Sometimes in the past, a friend would help me try sunglasses (I’d try them over my glasses) and they would always fall off, but that gave me a good idea of what styles were out there.

To end this post, I want to remind you to raise awarness for Cerebral Palsy by wearing green, for Hydrocephalus by wearing yellow (blue in some countries, for example the US) and white for sight loss.

I wear eyeshadows in the awareness colours when it’s an awareness day or month.

International Library Day: My Experience of Libraries (and Some Favourite Books)

I didn’t know that today, the 24th of October, is International Library Day. I found out from the news on TV. You learn something new every day.

I’ve known various libraries in my lifetime. Our library in Wallingford, Oxfordshire was hidden away amongst other buildings set back from the High Street.

There was a kids’ corner with different books which I liked when I was little.

As a teenager, my book choices were the teen book series Sweet Valley High, about the blonde haired, blue eyed Wakefield twins, Jessica and Elizabeth and their adventures in life and love. They were so popular the books were hard to find and always being borrowed by other people. I also enjoyed the Point Romance book series.

I had other books at home, such as the Wild Hearts series by Cherie Bennett (I loved the clothes and the music and the bright, colorful covers with hearts on them as well as the romance). I was overjoyed when I found books 5 and 6 online as an adult.

The Babysitter’s Club by Ann.M. Martin, was a huge series I have never been able to collect all the books from, and I started at age 12, but I was glad to have some. These also had good bold print I could see.

I one day decided I was “too grown up” for them when I was 15 or 16 and sold most of the ones I had for £5 at a garage sale me and my sister had. BIG MISTAKE: years later, I regret this, but they are fortunately available as Kindle ebooks.

The Making Out series by Katherine Applegate (called Boyfriends and Girlfriends in the US) as well as the Making Waves series, also by Katherine Applegate. These were the only large book series I ever managed to almost completely collect, and some books were so used that I my dad bought me other copies of them years later.

My biggest bargain was a used book I thought would be in a good condition but when it arrived, my husband told me it had a Tipp-Ex stain on the front cover. I felt with my fingers and sure enough, there it was. I was devastated: it was book 28 in the Making Out Series and I had finished it. I was already sad at such a great series coming to an end.

I have never forgotten the kind bookseller who let me keep the book and gave me my money back. I could not bear to part with this book as I had to know how the series would end. The bold type was one I could see if it was very close to my eyes, held in a book holder stand I had, and for this I was grateful.

I wanted, (and still want) Chatham Island off the Maine coast to be real. I wanted to meet Zoey, talk to Ben about sight loss, discuss the weather with Claire, talk dark lipstick colors and cool hairstyles with Nina, stay at Aisha’s parents B&B and go out on Lucas’ boat. I wanted to get to know Christopher and have a meal at Zoey and Ben’s parents restaurant, Passmores. I wanted to get to know Lara despite her troubled past. And I want to know more about Kate, who, to me, was always a bit of a mystery.

My favourite series about horses were The Saddle Club books (some of which I found in the library) and the My Friend Flicka trilogy by Mary O’Hara.

Other libraries I visited were in Didcot, Oxfordshire. I went to secondary (high) school in Didcot, and used the library there but mainly as a quieter place to do my homework and this was useful for the times I needed extra help from my classroom assistant/caregiver.

One of the best things about visiting my Gran in Gerrards Cross, Buckinghamshire, were the times she’d take my sister and I to her local library, where she’d borrow books herself. I felt I had a lot of books, but we rented DVDs from there. It was always interesting to explore the libarary there.

Once I got to University, I used the library at The University of Wales, Swansea. One thing I remember about that library was asking someone to put the María Moliner Spanish-English dictionary, which my then-Spanish teacher insisted we used. Dictionaries, just like many books and due to heavy weight and their small print, are impossible for me to use. I was good enough at Spanish that I didn’t really need one.

When, at age 19 I transferred to Reading University, I used the library there. I have fond memories of the tall brick building with windows on all sides looking out onto Shinfield Park, home of Whitekinights Campus, the same campus I lived on in my first year. The campus had lots of green areas and lots of trees, plus a lake on the other side of the campus. I remember wishing the lake was near the library so I could look down on it from the library window.

The library was my quiet place to observe the trees and the view of the campus as I thought of ideas for my assignments or just daydreamed about what I’d do in my free time between classes or at the weekend. I’m a big daydreamer, and that still hasn’t changed.

Books and libraries are great to make you dream if you’re a book lover like I am. I would wish that the complicated journal article in front of me were my favourite book instead, but my hunger for knowledge would make me want to try to understand it although all I got through was the abstract (article summary). In books with photos, I’d spend more time looking at the photos, especially if the font was too small, which it often was.

I would spend a lot of time trying to get my needs met in that library on Whiteknights Campus: I’d get staff to get books from the library of Bulmershe Campus, another of Reading University’s campuses so I didn’t have to go up there and I’d try to get them to photocopy something for me for class in large print so I could see it. They unfortunately had too much work to do, so I just asked my caregiver.

On the news today, they were talking about International Library Day and reading clubs for people with reading difficulties.

People who could use and benefit from these clubs are people with intellectual disabilities, children and adolescents with learning disabilities, the elderly or those with neuropsychological disorders.

Others who could benefit are people with temporary reading difficulties, such as people who recently immigrated to a country and who do not know the language or people who are starting to read, people who had poor schooling, or people who are illiterate.

What is easy reading?

Shared reading means sharing the experience of reading books, documents, websites and more. All these are specially prepared so people with reading difficulties can read and understand them.

Easy reading clubs help people with disabilities and circumstances causing difficulty with reading to read easily, as well as to understand and understand what is being read.

The groups are made up of people with different reading skills, who read aloud and share readings and activities, always guided by a librarian and therapists.

Disability A-Z: F is for Feet, Fatigue and Fashion

We’re now at the F post in this series, and if I’m honest I didn’t know what to write about. I’ve talked a lot about my feet,

but for those of you who don’t know about them, they are very affected by my CP, as is the rest of my body.

I have always liked the fact I have small feet, the smallest in my family (around a UK size 4/5, US 6/7).

This brings me onto a topic I love: shoes. I find shoes in my size are often on sale because of the small size.

Years ago, I was always advised by Emma, my then-PT, to wear trainers/sneakers as she said they’d support my feet better. My last answer was “No way, I love shoes too much to just wear trainers.”

I thought of the carers who just wanted to dress me in joggers because they thought it was more comfortable. Until I said “No, I’d rather wear jeans or a skirt.” I insisted although they said joggers made their job easier when dressing me.

(Pro Tip: for anyone who needs help from a carer or someone else to get dressed: get the person to hide anything you don’t want to wear in a drawer or harder-to-reach part of the closet).

Get them to leave the clothes you pick somewhere in your bedroom so that the carer can see them straight away. This saves them going through your closet/wardrobe looking for something for you to wear and avoids them making a decision for you).

I thought this solution up as carers would rummage through my clothes and not leave them tidy.

Going back to the physiotherapy session with Emma, I remember she took my feet in her hands one by one and told me I had very high foot arches and needed thick soles even though I’m sat in my wheelchair. I thought “Yes, I agree, a lady needs comfort.” In reality, I didn’t say anything because having my feet and legs picked up and touched is painful as my muscles are so tight.

I didn’t have anything new like what she was suggesting, so guess what? That meant mum and I got a SHOPPING TRIP!

So off we went into the center of Oxford, one of the nearest large places with a good shopping area nearest to where I grew up. The City of Dreaming Spires has pretty good shops.

We went to the nearest sports shop. I didn’t find anything I liked until I saw them….white trainers with a magenta insole and magenta and lilac sole with magenta details on the shoe.

I didn’t care how they were going to be kept clean, I just wanted them.

Next, we went to the Sketchers store. These are my first choice when trainers are concerned, as they have amazing, unique styles. I have some black ones with silver glitter and a slight wedge heel- there’s no way I was going to wear them for PT (but I still love those shoes).

I found some nude beige ones with 3 stripes on each side of the shoe. Each stripe is a metallic colour: silver, bronze and gold. It was love at first sight with these shoes and they were on sale.

I have worn them so much ever since. They look amazing with my dark wash jeans.

After we bought the trainers we went home. I showed the PT the trainers in the next session and she said the Sketchers ones were better because of the thick sole. They both seemed OK in my opinion as they both had thick soles.

Putting on my shoes and socks and dressing in general as well as tying shoelaces is something that I can’t do. I have some shoelaces that are like a coil so you don’t even have to tie them. I only have one pair and would like to get more. They are for people with disabilities who can’t tie shoelaces and I think they’re a really good invention.

On to the medical side of things. I have a lot of spine. hip ankle and foot deformities.

My hips and pelvis are turned in at strange angles and that means that my knees and feet are too.

I have a “pelvic obliquity ” which means the angles of my pelvis are different from each other (my pelvis is higher on the left than the right and my spine curves to the left to try to compensate).

As my pelvis is not straight, I can’t sit straight no matter how hard I try to do so, and I wear myself out trying to do so.

I also have Scoliosis (curvature of the spine), Kyphosis (a hunched-forward posture and rounded shoulders) and Lordosis (a larger than normal curve in my lumbar spine) meaning I can’t sit all the way back in my wheelchair.

I have a hip rotation of 60% on my left side and 30% on my right (called a “fixed rotation deformity”) . In medical terminology, my hips are “subluxated,” which means that they are half dislocated.

Surgery was considered to reduce the rotation from my hips to my feet but was ruled out. More as to why in my S post.

I have a 1cm difference in length (which doctors call a” leg length discrepancy” between my left leg and my right one which used to be 3cm, but fortunately has evened itself out as I’ve grown which was what my doctors hoped would happen.

The posture of my hips, feet and legs as well as that of the rest of my body, cause fatigue and pain. More about posture in the P post in my series.

I did actually have braces (Ankle Foot Orthoses or AFOs which supported my ankles, feet and legs) and orthopaedic shoes (Piedro Boots) for some years when I was little to try to position my feet and legs better. but I really didn’t like the shoes because they were very heavy on my feet.

See this post for an idea of what they looked like: https://justkatherineblog.wordpress.com/2015/03/14/my-legs/

The boots were a nice red colour but that was the only thing I liked about them. They were not my favourite shoes at all. The braces had Velcro on them and rubbed against my skin, irritating it.. They were really itchy and hot in warm weather.

Do I have some shoes that I love? You may ask. Well yes I do. I also have some ones with heels. My wedding shoes were black and had a block heel and a small ankle strap. I also have some ankle boots because I love boots. I have black ones, brown ones and even burgundy ones with a gold block heel. When we were in the store looking at the burgundy ones, my husband asked me “Do you really like those and are you sure you’re going to wear them?”.

My answer was “Yes!“. And I have.

In terms of clothes, I have some long skirts but mostly trousers/ pants. I find it hard to buy clothing sometimes because of it looking good from a seated position, but I do have many clothes I love. I know there are websites for wheelchair clothing but they tend to be located in the US and the prices can be a drawback. I have yet to find somewhere affordable.If anyone reading this has any ideas, for sites that ship to the UK and Europe at good rates and have good quality clothing for wheelchair users at affordable prices, please leave a comment.

Fashion is part of my identity and it makes me feel great.

💚World Cerebral Palsy Awareness Day 2022💚

Today is World CP day. As I think back over the last year so far for me, it is clear that it’s not CP that brings me the most challenges, but it is society that makes them harder. We are still fighting for housing and ways to pay for prescribed equipment which is hard. I am all for more affordable housing being built but society has other plans.

For those of you who are new to my blog, here’s a bit about my Cerebral Palsy story. I was born at 29 weeks on December 22 1981 in Kingston Upon Thames, south London with my identical twin sister Natalie. We weren’t expected to survive.

We went through a complicated birth, infections, heart and lung trouble (we couldn’t breathe at all when we were born and were in a very poor condition and so we were in the NICU).

We surived the first 9 days of our lives together, until Natalie became an angel.

When I took my first unexpected breath at 2 weeks old, doctors didn’t know what to expect, for I’d been through a lot already. I was diagnosed with hydrocephalus, which is known as “water on the brain”. It’s a buildup of cerebrospinal fluid which protects the brain and spine. This builds up excessively inside the brain and skull which causes swelling and brain damage. I was diagnosed with CP around this time when the doctors saw I had difficulty moving and was very stiff.

For me, CP causes difficulties with all daily tasks and I require help from others. Find general information about CP here: https://www.scope.org.uk

I have difficulty with concentration, relaxation eating and drinking, swallowing properly, general mobility and positioning, sleeping, spatial awareness and vision as well as stamina, general coordination, grip ability and strength. I have a limited range of motion and have daily pain and spasms and seizures.

I have Spastic Quadriplegia Cerebral Palsy with Hydrocephalus and all this means my muscles are too tight all over my body as well as my trunk and face. I have a powered wheelchair for mobility and I wear strong high prescription glasses. I am registered blind. I have shunts which drain off the fluid from my brain and these surgeries left a lot of scars.

Here’s more information about hydrocephalus: https://www.shinecharity.org.uk/hydrocephalus/hydrocephalus.

I’ll talk about hydrocephalus more in my H post for my Disability A-Z series on my blog.

I have a speech problem called dysarthria which I have talked about before on here which makes my speech slower and makes me stumble over words and sometimes be hard to understand. It also makes me drool too much.

Sometimes, it’s harder to think of words and I can take time to respond. This makes people think I’m not listening when I really am. Extreme tiredness can make me go very quiet and I easily get headaches from the effort my muscles have to make to move, no matter how small the effort.

My intelligence is unaffected but I have a math-related learning disability This makes anything related to numbers difficult.

I love to blog and email and have many book drafts. I would love to be a published author someday. I am still working on that.

I use assistive technology for computer use. For me, this a voice recognition program which is built into my computer. I have used these programs since I was at primary school and they (as well as the physical help from people) helped a lot in me being able to do homework and get my degree.

I love makeup, fashion and beauty and I can speak Spanish. I am married. I did therapeutic horse riding from age 5-17 and horses, as well as cats, are my favourite animals.

This Cerebral Palsy Day, as well as every day, I want people to see they are original and unique no matter how their disability affecs them. If you have CP and have ever doubted your ability to achieve things, I want to say there are ways to study, to learn or to do adaptive sports or what you want to do. I have been discouraged and still do get discouraged, but I know I have a fighting spirit and all of us with CP do. Whatever you’re going through with your CP (and believe me, it does make life interesting!) you have my support.

Remember to keep being you despite your CP and that you should never stop spreading awareness for CP how you can. I spread awareness through my blog, and through what I do each day. Green is the CP awareness colour and I am wearing green eyeshadow every day this month. I’ll be posting tweets throughout the day, including my CP story, on my Twitter account @theglitzqueen. If you like my content, feel free to follow me there.

Although awareness in a day isn’t nearly enough, I do all I can through my blog to show my life with CP, Hydrocephalus and severe visual impairments. I’m happy to be here to be able to do that. I am more than just a person with CP and my other disabilities. I love books and writing (which I enjoy thanks to assistive technology) fashion beauty and makeup as well as movies. I’m married and speak Spanish.

I’m happy to see interest in my blog and thank each and every one of my followers for your continued support.

The green makeup look I wore today was:

Urban Decay Moondust Shadow in Lightyear from the Urban Decay Moondust Palette (2016).

W7 London Rose Mascara in Black

Shade 08 (dark green) from the Kiko Smart Lipstick Palette Shade Selection # 03.

Byphasse Face Mist with Rosewater and Camomile Extract for Sensitive and Dry Skin (used to refredh skin and fix makeup).

I finished the day off by listening to some memoirs by people with CP on Scribd.

For more information about Cerebral Palsy Day, here’s the CP Day site homepage:

Harlequin Trade Publishing Holiday Blog Tour: All is Bright by RaeAnne Thayne

Author: RaeAnne Thayne
ISBN: 9781335933997
Publication Date: September 20, 2022
Publisher: HQN

About the Book:

Return to Hope’s Crossing this Christmas in New York Times bestselling author RaeAnne Thayne’s latest heartwarming story of matchmaking at the holidays!
Sage McKnight is an ambitious young architect working at her father’s firm who takes on her most challenging client in Mason Tucker. The former pro baseball player is still healing from the physical and emotional scars after a plane crash left him a wheelchair-using single dad, and he’s determined not to let anyone breach his emotional defenses. Sage knows her work on Mason’s new home in Hope’s Crossing is her best work yet, and she won’t let her grumpy client prevent her from showcasing her work personally.

With Sage’s gift for taking broken things and making them better, the matchmaking talent of the quirky locals and a generous sprinkling of Christmas cheer, Mason doesn’t stand a chance against the power of this magical holiday season.

Contact ReaAnne:

Facebook: https://www.facebook.com/AuthorRaeAnneThayne/
Twitter: https://twitter.com/raeannethayne
Instagram: https://www.instagram.com/raeannethayne
Goodreads: https://www.goodreads.com/author/show/116118.RaeAnne_Thayne

Q&A with ReaAnne Thayne:

Who was your favorite character in the book and why?

It’s so hard to narrow this down because I truly felt like I was revisiting old friends while writing this book. I wrote seven original books in my Hope’s Crossing series and came to love the town and the people there. It was so much fun to go back and catch up with them all, nearly 10 years later. I especially loved writing a “second generation” book about some of the characters who were teenagers or young adults in the original series and now are at a better stage in their lives for happily-ever-after.

What is the most difficult thing about writing a book?

Whenever I start a book, I have all these ideas about where I’m going to take the characters and the plot. As I start writing, each choice I make for the characters (hair color, occupation, backstory, etc) rules out other possibilities for them. All that decision-making is exhausting! I know many writer friends who have a hard time making decisions in their personal lives and I truly think it’s because we spend all day making hundred of choices in our books about who are characters are, what they think, say, do, etc.

It’s wonderful to see a book featuring a character in a wheelchair. Did you have to research spinal injury for your portrayal of Mason? Do you have any advice for writers who want to create a realistic portrayal of someone with disabilities they have not themselves experienced?

Yes! I did extensive research about spinal cord injury, watching panel discussions on line among people with SCIs, complete and incomplete, about their lives, challenges and joys. The best advice I have for writers who want to include people with disabilities is fairly obvious. Talk to someone with that kind of disability to find out what their lives are truly like. I have a son who uses a wheelchair so I have extensive experience when it comes to accessibility issues and inclusive design challenges we have faced with him (and also how we have tried to make his world as inclusive as possible). I have spent 25 years as his mom learning about how the world isn’t always designed for people who have different mobility needs. Even after all that time as a caregiver and advocate, I don’t have the same perspective as the actual person who uses a chair.

Do you have any advice for writers wanting to write in this genre? How do you create enough emotion and excitement to keep people hooked throughout the book?

It really comes down to trying hard to create layered, nuanced characters and working to portray their fears, dreams and challenges with authenticity. I always start with my characters first, figuring out who they are and what they need to learn through the course of the book. The plot then builds around the characters.

Do you decorate your writing room when you are writing a holiday book?

I do! I always put up a Christmas tree in my office and keep it up until the book is done (which is sometimes March!). I also like to light holiday-scented candles when I’m working, to set the mood, and often listen to Christmas music, or at least holiday-themed Lo-Fi concentration music.

Is it difficult to come up with a specific Holiday themed novel every year? No, because I love everything about the holidays! Starting a holiday book always makes me happy. No matter what holiday people celebrate, the time from November to January can be a time of family and chaos and joy, all the things I love to write about!

What is the best gift you’ve ever received?

After the birth of our son with special needs, I was trying to write full time while juggling many doctor appointments and hospital stays. We were really struggling financial because I quit my full-time job after we had him and at that time my writing income wasn’t anywhere near what I had been making. I was totally shocked on Christmas morning to open a gift containing a laptop I knew we absolutely couldn’t afford. Turns out my sweet husband cashed out his vacation days for the next year in order to surprise me with a used laptop so I could still write while on the go with our son. It remains one of my priceless possessions. Though it’s now 30 year old technology, I’ll never part with it.

What is the best gift you’ve ever given?

I love giving people experiences. My husband is a photographer and one year I surprised him by chartering a snow coach for him in Yellowstone. He spent an unforgettable day in the middle of a snowstorm taking pictures of elk and bison in the park. He took our son and a friend and they had an amazing time.

What’s next for you?

I’ve just started my 2023 Christmas book! I’m having so much fun getting into the holiday spirit again.

My Review:

When I found the book details through Harlequin Publishing’s Christmas blog tour offerings, I jumped at the chance to review All is Bright. RaeAnne Thayne is a favourite author of mine. 

In this novel, she has created a believable story and the characters are realistic. On the one hand we have determined, giving ,sensitive and helpful Sage and on the other hand we have grumpy Mason.

The setting is amazing. I would love to have Mason’s huse with all the adaptations that has been made to it. If I lived in that house I would be over the moon with Sage’s help right from the start.

I didn’t like Mason very much and thought that he was a difficult person to be with. I admired Sage’s enthusiasm for the project. 

As a person with disabilities since birth and a wheelchair user, I think the author portrayed the reality of that well in terms of access needs and adaptations.

I don’t have a spinal injury like Mason, but I empathized with his difficulties getting the house to fit his needs. I kept wondering how much all the adaptations would cost. The descriptions of everything in the book are very visual, And this is something else I value about the author’s writing style.

Thanks to RaeAnne Thayne and Harlequin trade publishing for my eARC in exchange for an honest and voluntary review.

This book is a five star novel because of how much I liked the adaptations to Mason’s house, and the attention to detail throughout.

I love this book, and recommend it to everyone whether they have a disability or not.I think it goes a long way towards raising awareness of living with a sudden spinal injury and the housing needs of people with disabilities.

I congratulate RaeAnne thayne as there aren’t enough books with characters with disabilities in them. The Christmas theme is a bonus in this book, but that is very atmospheric. 

The book is a winner for me.

Where to Buy:

BookShop: https://bookshop.org/books/all-is-bright-a-christmas-romance/9781335449979
Harlequin: https://www.harlequin.com/shop/books/9781335933997_all-is-bright.html
Barnes & Noble: https://www.barnesandnoble.com/w/all-is-bright-raeanne-thayne/1141697219?ean=9781335933997
Amazon: https://www.amazon.com/All-Bright-Christmas-Romance-Novel-ebook/dp/B09P1NF9KN/ref=sr_1_1?keywords=all+is+bright+raeanne+thayne&qid=1662582061&sprefix=all+is+bri%2Caps%2C109&sr=8-1
Books-A-Million: https://www.booksamillion.com/p/All-Bright/Raeanne-Thayne/9781335449979?id=8292090795540
Powell’s: https://www.powells.com/book/all-is-bright-9781335933997


“We’re now walking into the home theater,” she spoke to her outstretched camera, “one of the more challenging rooms of the renovation. Prior to this update, the room had a series of steps leading to the different levels of recliners. Obviously, that would no longer work for the homeowner, so we chose to remove the steps completely, instead building a gradual slope with room to maneuver around each level of seating. Beyond featuring state-of-the-art electronics that will be easily upgradeable, everything in here—from the blackout window shades to the sound system to the recliners themselves—can be controlled through a single smart home phone app.”
She turned the camera to face her. “Doesn’t this look like a wonderfully cozy place to watch a movie or catch your favorite sporting event?”
She smiled into the phone camera, then moved back into the wide hallway leading to the library/office, her own favorite spot in the house.
“You can see here we have sliding pocket doors that open and close with the push of a button. We chose to replace the traditional doors in many of the spaces with these pocket doors, which gives more room for the homeowner to navigate, and we also…”
Her words trailed off as she heard a sound behind her and turned to see a large, dark-haired man using a wheelchair, framed in the doorway.
He frowned, an expression she had become all too used to seeing there, during their few in-person interactions and their more frequent video conferences.
“What are you doing?” he demanded. “You’re not filming this, are you?”
Sage dropped her phone with an inward wince and stopped recording. Technically, this was still her job site, which meant she had full permission to check on the progress of the work until they handed the finished home over to the owner, who happened to be this man, former professional baseball player Mason Tucker.
With effort, she forced herself not to show any of her dismay. Out of all the clients she had worked with during her career thus far, Mason Tucker was the only one who made her palms sweat and her stomach feel knotted with stress.
“Mr. Tucker. Um, hi.” She forced a smile, feeling awkward as hell and wishing she had waited until the contractor would be here to take a tour.
“I haven’t been here in weeks and wanted to document the progress that has been made since I visited last. I didn’t see any vehicles outside and assumed everybody was gone for the day.”
“I’m parked in the garage of the guesthouse.”
“I didn’t even know you were in town. Have you been here long?”
The last she knew, Mason had been living in Portland, where he had once played for the same baseball team as another town resident, Spencer Gregory, who was married to Sage’s friend Charlotte. Sage knew Spence and Mason had remained friends, despite life circumstances that had led to both of them retiring.
For a moment, she wasn’t sure Mason would reply, then he finally shrugged. “I wanted to be close as we started to wrap things up so I can keep an eye on things and be on hand if there are any questions or problems. My daughter and I moved into the guesthouse a month ago.”
Why hadn’t her dad or Sam Delgado told her Mason was already living in Hope’s Crossing?
Beyond that, she suddenly thought, how in the world was he making the guesthouse work? That place wasn’t at all wheelchair accessible, with three steps leading into the place, narrow hallways and no accessible bathroom like those she had designed for this main house.
Renovating the guesthouse was part of the master plan but not until all the work was finished on Wolf Ridge itself.
“That place is a mess. How are you getting around?”
“I’m managing,” he said, his voice curt. “I can still get around on crutches, as long as I don’t have to go far.”
“You shouldn’t have to go far, from one end of the guesthouse to the other. It’s tiny.” She imagined a man Mason’s size would make the space shrink to almost nothing.
“It works fine for me and Grace. It’s only a few more weeks anyway, right?”
“I suppose.”
Sam Delgado had assured her when they spoke earlier that the renovations to Wolf Ridge would be finished shortly before Christmas.
Sage had to admit, she wouldn’t be sorry to put the job behind her.
While she was thrilled with the way her designs had transformed the mountain estate, working with Mason Tucker himself was another story.
She tried to be compassionate. Whenever she grew frustrated with him, she would remind herself that Mason had endured the sort of tragedy that would have completely destroyed someone without his resilience. While she was only charged with renovating this house, Mason had to completely rebuild his life.
He had every right to be surly and uncooperative.
While she might know that intellectually, it was difficult to remember when she was dealing with yet another last-minute change order.
Still, he had superb taste and basically unlimited financial resources. In a few more weeks, when the job was finished, Wolf Ridge would meet his needs now and long into the future.
The home now featured a new indoor pool, spa and high-tech exercise room on the bottom level, two new elevators at either end of the house and heated floors throughout. Wolf Ridge also featured a kitchen that worked for people of any mobility level and wheelchair accessible bathrooms on each level, including the extensive owner’s suite on the second floor.
Sage loved everything about this house, from the skylights to the beams her dad had mentioned to the wider doorways and hallways. It was warm, luxurious, comfortable.
She wanted to show off her work to the world. The only trick would be convincing the intensely private Mason Tucker.
Faced with his glower now, Sage felt as if she faced a Herculean task.
She had to try, though, didn’t she?
Her fledgling internet show had exploded in popularity over the past year, allowing her foundation and personal pet project to help far more deserving people than she had ever envisioned.
Sage could only imagine the vast number of views—and thus ad revenue—a video featuring Wolf Ridge would bring in. People would love a glimpse inside the house redesigned for the reclusive and private Mason Tucker.
The public still clamored to know everything it could about the former professional athlete who had endured so much physical and emotional pain.
If she could showcase Wolf Ridge on the Homes for All internet channel, she would also bring awareness to some of the issues and obstacles noninclusive design presented to those with mobility challenges.
She drew in a breath, not sure where to start. Yes, he would likely slap her down but she wouldn’t know unless she asked, right?
“The progress while I’ve been overseas is amazing. I can’t believe how different everything looks, with the finish work and the new flooring.”
“Sam and his subs have put in some long hours.”
“It shows. And Jean-Paul tells me he’s going to have nearly all the furnishings ready to go in a few more weeks, except for a few custom pieces.”
“That’s what he tells me.”
“I can’t see any reason you and Grace can’t move in before Christmas. How exciting!”
A shrug was his only response, which she supposed was about as eloquent as Mason Tucker could be.
She stuck her hands into the pockets of her wool coat.
He was going to say no. She knew it and braced herself for it.
“There’s no easy way for me to ask you this so I’m going to come straight out with it.” She drew in a breath. “For the past year, I’ve hosted a YouTube channel, Homes for All, which features projects with the kind of innovative universal design elements we have tried to incorporate here at Wolf Ridge.”
He raised an eyebrow but said nothing.
“While it’s called Homes for All, we feature commercial as well as residential projects. I hope to continue raising awareness of how limiting and even discriminatory some design practices can be for those who are, er, differently abled.”
He again said nothing, only continued to look at her out of those hard blue eyes that concealed his emotions completely.
“I have poured so much energy into Wolf Ridge, and I’m absolutely thrilled with the way the house has turned out. It’s everything I dreamed and more. I feel like more people should see it. Don’t you? I would absolutely love to feature your home on my channel.”
She held her breath, hands curled inside her pockets.
As she might have predicted, he didn’t leave her waiting long for his answer.
“Hell no,” he said with blunt finality, then turned away and started to roll back down the hall so abruptly she could only stare at him.
After a moment, she pursued him. This was too important to give up at the first obstacle. “Just like that? You don’t even want to hear the details?”
He paused and maneuvered to face her. “Why waste both our time? I don’t need to hear the details. Whatever you have to say doesn’t matter. My answer will remain a hard no.”
The man was impossible. Her grandfather Harry might have called him pigheaded, but Sage preferred the more diplomatic obstinate.
And yes, how could she blame him for that? Mason was trying to rebuild a life for himself and his daughter in Hope’s Crossing, away from the prying eyes of the tabloid press. She already knew he was an intensely private man. He had made her sign a nondisclosure agreement before even talking to her about what he wanted done at the house.
She might have been more surprised if he had agreed to let her feature his house on her channel.
Still, she had never been good at taking no for an answer. She could be every bit as pigheaded as Mason Tucker. She figured she had inherited that from Harry Lange himself.
“What I love most about your home is how seamlessly we have managed to integrate the new design into the existing structure without altering the basic style and grace of the home,” she said. “I’m sure you can agree that the changes will benefit everyone who lives here, not only you.”
“Sure,” he said after a moment. “You definitely know what you’re doing. The house is exactly what I wanted. That still doesn’t mean I want the whole world peering in at the transfer bars in the shower or the damn lift I need to use so I can get in and out of my spa.”
Sage was so caught up in the first part of what he said, the unexpected praise coming from her difficult client, that she almost missed the second part.
“That’s exactly what I try to showcase on my channel. When done right, universal design can blend with the overall style of a home or commercial property, small and sometimes barely noticeable changes but enough to make a huge difference to those who need them.”
“No,” he said again. “Judging by how seldom you’re here, you must have other projects. You can focus on those.”
“I have. You can watch the videos online. We have about thirty of them up now. But Wolf Ridge is the most ambitious residential renovation I’ve ever undertaken. Most people would never have poured the kind of resources you have into making such extensive changes to an existing structure. They would have sold the house as is and built a custom home somewhere else. Because of the location and the basic sound structure of the house, you chose to renovate instead. The results are beautiful, and I want the whole world to see it.”
“And I don’t,” he said bluntly. “I don’t need to give the whole damn world any more reasons to pity me.”
A muscle clenched along his jaw, and Sage felt immediately ashamed of herself for her selfishness at wanting to showcase her best work here.
Her motives weren’t completely selfish, she amended. Yes, she was proud of her work on Wolf Ridge. This project, more than any other she had been part of, might help her begin to emerge from her father’s huge and well-earned shadow.
It wasn’t easy being Jackson Lange’s daughter and trying to find her own way in the same field as one of the world’s most brilliant architectural minds.
That was the very reason she hadn’t taken Jack’s surname, even after they reconnected. She still went by Sage McKnight, the name she’d always had. She didn’t want to be known first as Jackson Lange’s daughter, with the weight of all those expectations on her. She wanted to succeed on her own.
Beyond that, she was doing good work with Homes for All. She knew she was making a difference in people’s lives, not only by changing minds about universal design but by changing lives.
Should she tell Jackson Lange that Homes for All was also the name of her foundation, funded by the ad revenue her videos generated online? The purpose was to help people who couldn’t otherwise afford to make necessary changes to their living spaces when age or health issues impacted mobility.
No. She didn’t want to guilt him into letting her invade his privacy by showcasing Wolf Ridge.
“Will you at least think about it?” she finally said. “You don’t have to decide anything right this moment.”
He shrugged. “I can think about it from now until Christmas. I won’t change my mind. My house, my decision. You can take all the pictures and video you want for your own personal use but if you post them online, I’ll sue your ass for breaking our nondisclosure agreement.”
He wheeled away without another word, leaving Sage to gaze after him with helpless frustration.
She hadn’t really expected any other answer, but she had hoped.
Her watch alarm dinged, and she glanced down at the reminder she had set. She was supposed to be at her mother’s bookstore and coffeehouse, Books & Brew, in ten minutes.
She quickly shot a few more images then walked back out into the December twilight.

Excerpted from All is Bright by RaeAnne Thayne. Copyright © 2022 by RaeAnne Thayne. Published by arrangement with Harlequin Books S.A.

Help Me to Help Ami

Those of you who read my blog will know how I like to support others with disabilities and spread awareness of different disabilities.

I first came across Ami’s blog in 2020 when I was searching for blogs by others with disabilities. Her blog is called Undercover Superhero, and I like it because Ami’s writing style is great and her blog covers interesting themes, from life to motherhood and also disability-related posts. Thanks Ami for featuring my post on your blog in 2020.

Ami and her husband Ewan are fundraising to raise money to help the people who helped her rebuild her life.

Find Ami’s story and campaign page here: https://undercoversuperhero.com/were-fundraising-for-the-physiotherapy-and-occupational-therapy-departments/#respond