Bloganuary Day 31: Where is the best place to watch the sunset near you? #bloganuary

I admit to feeling a little sad as I dictate this post today. I am sad but proud. Sad because today is the last day of Bloganuary 2022, and proud because I’ve completed my second Bloganuary event with a month’s worth of posts, as I did my first event last year.

It’s been amazing and I have met supportive people who took time to click on my posts and to whom my post stood out. Thank you.

On to today’s post.

Sunsets are one of my favorite things. In fact, my project for Camp NaNoWriMo one year was a book draft with my observations about life, in which I included the more personal side of my life (disability-related things and daily routines) to things I love and don’t like, as well as my take on life’s ups and downs.

Why do I love a sunset? I love the colors, and how they seem to mix together and explode over the sky. I love how pretty a sunset looks. To me, it looks as if an artist has spilled paints all over the sky, or as if a makeup artist has spilled makeup.

To watch the sunset where I grew up, I did not have to leave the house. My bedroom was at the front of the house, and I loved how the light would my bedroom with a warm glow as the last of the sun’s rays came in the window. Or if I were in the garden, which was a real sun trap, I’d enjoy the sunset there and how it colored the sky.

“Red sky at night, shepherd’s delight” mum would always say, and I’d love the pink-red, orangr and yellow hues.

In winter, if the day had been cold, crisp and bright as it sometimes was, I’d hope to get a glimpse of the sunset before darkness closed in around 3;30 PM. Which was when a school day ended. So I’d watch the sunset on the way home.

I much prefer the few extra hours of daylight in the winter in Madrid, where it’ll get dark around 6:30PM in the winter.

There are many slopes and hills around the city to watch sunsets from. Although my wheelchair is good at slopes, there is a limit to how much of a slope it can climb. I prefer to be somewhere flat.

We went to a park in the summer that I think will be a good place to watch a sunset. Parque del Oeste. There are slopes there, as it’s basically on a hill. I’d watch the sunset from a flatter area within the park. You can take a cable car ride in this park over Casa de Campo which is an area with a lot of trees. I expect a sunset there will be spectacular. If only the cable cars were wheelchair accessible…

Our nearest park is a nice place, although in winter we don’t make it a habit to stick around there too late because I feel the cold so quickly. Summer sunsets are amazing there, or in fact wherever we are, because most of the time there’s so much sun and it can be very bright.

A sunset from restaurant we had our wedding meal at would have been great. The daytime views were amazing.

I’ve always wanted to admire the view from the top of the Torre de Moncloa (Moncloa tower) and wonder if we’ll ever get to do that. The tower has a restaurant, and panoramic views.

I’d pick a Spanish sunset any day. I’ve seen sunsets from parks and streets. Even the sunsets I’ve watched from my hospital rooms at the times I’ve been hospitalized have brought me comfort. I saw the dawn from my hospital room once, and that was just as beautiful.

My gran always said there’s no need to be anywhere than England for great countryside, and beautiful scenery. And she’s right: I’m lucky to have been born in a country where there’s an abundance of green countryside. I do miss south Oxfordshire’s hills and valleys. And sunsets over the Thames.

The views from the main library on the campus I studied at, Reading University’s Whiteknight’s campus, are something I have never forgotten, and this was a favorite place of mine. I love Shinfield Park where the campus is located. It’s a busy yet peaceful place and not too far from the centre of Reading.

I have so many happy memories from my time there.

I’m a city person at heart, an urbanite. Whether it’s Oxford, Reading, London or Madrid, there are so many beautiful places to watch the sunset.

I’ve heard Ibiza is a great place for sunsets. So far, I’ve never been there but the sunsets in rural areas of Tenerife, Comunidad Valenciana and Menorca were spectacular too.

Where is the best place to watch the sunset near you?

Thanks to WordPress and the Bloganuary team for an amazing event that always makes me think outside of the box when blogging, and explore some themes I never have before.

This is a cause for celebration. As is the fact that this is my 2000th post on my blog. Thanks to those who have followed my blog this month and to my other followers.

See you for Bloganuary next year.

Used Product and life Update: January

My used products this month are:

W7 On the Rocks eyeshadow Palette

Makeup Revolution Capricorn Complete Eye Wheel

Cien Perfection Liquid Concealer in Medium

I really enjoyed bloganuary and this was my second year taking part and it’s the second year it has run. love the event as it makes me think and the subjects are so varied. I met some really supportive people, too.

I also did my first writing challenge of the year: AutoCrit’s Start Strong Writing Challenge, which was good fun.

Book-wise, I have decided to focus less on blog tours this year and more on finishing books I have. I know I said this other years, but I mean it this year. I got too much burnout from blog tours in the past.

This month, I’ve taken up my continued search for a good wheelchair technician and my products again. I had two evaluations that seemed like they were going to go well but did not.

The best days this month were:

The day I found someone who could really help me with evaluations and getting equipment for my needs.

The day I sent in my completed AutoCrit piece. Every time I do an AutoCrit writing contest, this is a happy day.

Bloganuary Day 30: What would you title the chapters of your autobiography? #bloganuary

I am no stranger to thinking about my life and autobiography, for I blog about my life all the time and have done memoir courses online. I have litened to a lot of autobiographies in audiobook format, and I have my top rated autobiographies.

I am so passionate about writing that rather than just chapter titles, I was tempted to do an entire book outline. So told my creative side to restrain itself a little. This is an interesting blog post title we have today. I am happy that it comes easy to me to know what to include in this post.

My Gran always said I should tell the story of my life, and I took her up on the idea. She has always said I’m articulate.

I have a memoir I’ve been working on for some years now.It’s a memoir about my experience of falling in love and my relationship so far. It includes many experiences others have that I did not think I would:

From my friend who was a boy (his name was David and he was a neighbor of ours). He was the first person who saw me for me). Then, there was Ciro at hospital in Oxford. That was my first experience of love and loss. I felt truly sad when he passed away.

I was doubting if I’d ever find love to disaster dates and my experience of finding love when I did not expect it. It also has life experiences, like my birth, childhood experiences, eductaion and university and shows how I czame to be who I am today. There are also hospital experiences and just anything I could think of relating to life and love from my point of view.

I drafted some of another memoir, called Twin Number Two, about my thoughts around being born a twin when my twin wasn’t there to share my life with me. Natalie and I were born on the 22nd of December 1981. I was Twin Number Two and was born at 11:24AM. We were nameless at first as it was uncertain we’d survive, so we were Twin I and Twin II.

I didn’t get around to thinking of chapter titles until now, but now know they would have been something like this;

  1. Twins!
  2. Learning about Natalie Jane Hayward (I Was Not Alone When I Was Born)
  3. Living Life for Us
  4. You’d Love Him Too
  5. Your Resting Place
  6. Happy Birthday To Us
  7. Christmases Without You
  8. I Am Proud
  9. You Make Me Whole
  10. A Tribute to You

In 2020, during lockdown, I had another idea for a memoir: How Writing Helped Me Through the Pandemic. This was really helpful and cathartic. I never stop blogging during difficult times, or ever. Words have always helped me.

As a memoir is just a “slice of life” and not my whole life, I haven’t given much thought to what the chapter titles would be. I sometimes tried to think of some, but they never came to me. So this blog post is really making me think again.

  1. An Unexpected Birth
  2. Fighting for My Life
  3. Finally Home
  4. Nicky
  5. Moving Towards Better Things?
  6. Unteachable?
  7. Avis
  8. Joy and Peter
  9. Maggie
  10. Finding the Real Me
  11. Friends
  12. Hospitals
  13. USA Here We Come
  14. Girls’ School
  15. Keike, Thato and Horses
  16. La Clusaz
  17. Jodie
  18. Cymru and Siobhan
  19. I Got In!
  20. The Best Years Of My Life
  21. Pa
  22. ¡Viva España!
  23. Alfredo and Amor
  24. Mariu
  25. Moving On?
  26. Words Help the Soul
  27. Karin
  28. Who Needs a Wedding Planner?
  29. Lily and Susan
  30. Rosa Estela
  31. Acepto
  32. Pandemia
  33. Venturing Out
  34. Just Katherine
  35. Health Matters
  36. Veranito y Veroño
  37. Doing the Best We Can

What would you title the chapters of your autobiography?

Bloganuary Day 29: What is something you learned recently? #bloganuary

I found I had to think a lot about this question, because I haven’t learned much recently that I don’t already know. But what I have learned recently will help me whether the way I learned it had a positive or negative experience behind it.

That you have to find the good in each day

That not everyone will automatically understand the extra hurdles I have in life because of my disabilities except my husband, and doctors, nurses and health professionals. Even then, it may not be all of them.

That, as much as, fortunately, many do understand, I will encounter indifference, pity or be treated like I am wasting peoples’ time by some people.

That the only way for others to understand is for them to live my life with me

That I love it when people look at and talk to me instead of the person with me. I was once referred to as “she” or “this lady” recently. I kept saying “I’m Katherine.” Because I am.. I have a name for.a reason, so people should use it.

That how much I miss my sister or good friends from home or other friends from the past physically hurts and that times when there is lack of contact do even more.

That I wish I had more great friends

That I am sensitive and cry easily but that my being sensitive has also been led to people using the word kind to describe me the most.

That people are still scared by what they don’t know. My glasses, wheelchair or disabilities aren’t scary, and there’s no need to be scared of me. I’m a person and unique just like you.

That there’s true value in groups for people with CP, or Hydrocephalus or visual impairments or book lovers and the support they give

That my blog and Twitter has led me to some genuinely great people, and if supporters stick around they can be a helpful support network.

That disability can be beautiful and lead me to have a unique life

That I am beautiful inside and out

That my scars still make me fight tears when they remind me how much of a survivor I am

That my success in my blog or my writing projects is down to my passion and perseverence.

That my taste in clothes and makeup is a part of me and that they always make me feel better

That a makeover or pamper session at home can brighten my day and make me smile.

That I have a unique skill for picking colors for makeup and that I live with a passion for it

That January is a month I look forward to because of Bloganuary, and that Bloganuary is true community.

That, as much as I hope this has changed in society, there are still people who prefer to turn their back on me because I am too “complex” in terms of my needs instead of being positive and seeing me as a challenge and working with me to find solutions.

This seems cowardly and is very disappointing and can be upsetting. Especially if it is ongoing through time. It may not matter to some people that they have let me down, but it does matter to me.

There’s always a reason I ask for help.

That wheelchair technicians do not know all they say they do about products, medical conditions and postural difficulties, and that, in fact, most of the time I know more than they do.

I was wondering how much training they actually had. That IS something we found out recently: that training requirements vary from country to country in Europe. Some of the information is shocking, and explains in part why I recently experienced what I did.

That people can be so wrapped up in the virtual world of their phone that they do not take time to acknowledge an email, or contact people in any other way. This can happen with anyone, close contacts or those who are acquaintances or people I only meet once, or people I do not meet at all.

That I am getting better and better at turning things around when people act like I don’t, or can’t, understand them, or want to try to blame me for something. Because they may think it’s “easier” to blame me because of my disabilities or because I can’t move quickly. That giving them an intelligent answer shows much more inner strength than allowing them to get to the point where they want to argue with me.

That saying “OK, thanks for your time” when people want to get argumentative or don’t know what to say or how to help is a great way to end a conversation and come out of it as a strong and resilient person. This helps me not get upset and instead I feel a feeling of freedom, a flutter of happiness inside as to how strong I’ve been.

I still have feelings and am a human being. I am smart. I just rely on others in my daily life. I can’t be anyone but me.

Lastly. I learned that real help can come from an unexpected place, and that it’s a blessing when it does come.

What is something you learned recently?

My First Ten Books of 2023

The first book I listened to this year was It Gets Easier! . . . And Other Lies We Tell New Mothers: A Fun, Practical Guide to Becoming a Mom by Claudine Volk.

https://www.goodreads.com/book/show/5839034-it-gets-easier-and-other-lies-we-tell-new-mothers

3.5 stars: A good giode but a little patronizing in some parts

Next up was Sunrise with the Silver Surfers by Maddie Please. https://www.goodreads.com/book/show/62312008-sunrise-with-the-silver-surfers

4 stars: nteresting backstory and great attention to detail.

Perpetual West by Maren Mesha

https://www.goodreads.com/book/show/60006889-perpetual-west

4 stars: Interesting journey

Moonrise over New Jessup by Jamila Minnicks

https://www.goodreads.com/book/show/63132233-moonrise-over-new-jessup

4 stars: Atmospheric with great attention to detail. A time period I knew nothing about.

https://www.goodreads.com/book/show/65588069-berlin-calling

Berlin Calling by Lilo Moore

4 stars: Eurvision and great songs, would have liked lyrics.

Blinded Me With Science by Tara September

https://www.goodreads.com/book/show/62600953-blinded-me-with-science

4 stars: A quick pace with great attention to detail and hot romance at times. Relatable. Excellent narrator in the audiobook version.

My Sister’s Secret by Diane Saxon

https://www.goodreads.com/book/show/61459038-my-sister-s-secret

4 stars: Sisters and secrets. I enjoyed the twists and turns in this and love books about sisters.

The Pocket Guide to Neurodiversity by Daniel Aherne

https://www.goodreads.com/book/show/65269872-the-pocket-guide-to-neurodiversity

5 stars: Short but excellently explained and I identified with some things and learned more about others.

The Perfect Girl by Kelly Golden

https://www.goodreads.com/book/show/80344908-the-perfect-girl

4.5 stars: Dark in some parts, gripping and mysterious

Tilly’s Tuscan Teashop by Daisy James

https://www.goodreads.com/book/show/62236348-tilly-s-tuscan-teashop

5 stars: Daisy James’ style shines through in this book located in Tuscany. Amazing start to a new series.

Bloganuary Day 28: Describe Your Perfect Birthday Cake #bloganuary🎂🎈❣️

This sounds really fun!

Every time I talk about my birthday, the story begins with how I am a surprise. I was not expected to be here. How I am an undiagnosed identical twin. I get quiet and a little emotional inside when I think about my birthday and what it really was:

December 22, 1981:

Kingston Hospital, London, England: the two of us were born spontaneously at 29 weeks and were in the NICU. 6 hours later, we were transferred by ambulance to Queen Charlotte’s Maternity Hospital, also in London.

Our birthday was full of worry for all who loved us as we fought for our lives.

My birthday has always been a day of joy, but also a day of reflection, as my sister Natalie is never far from my thoughts, as she is always there in my heart.

Every birthday, I celebrate for me, for her. Every birthday is a huge milestone. No matter what life, or cerebral palsy, or hydrocephalus puts me through, I am glad to see another year. And every birthday is just as special to me as the last one.

Each birthday, I give thanks for the people who, and things that support me so I can have the best life I can. My husband, medical advances and my doctors and nurses. The equipment providers for their innovative solutions for mobility or comfort. For everyone who gives me their time, support, love or dedication. For everone who celebrates my achievements.

Each birthday is a gift in itself. I breathe and I smile and I feel like every birthday is a great one. Because I am here to celebrate it.

I have always dreamed of what my perfect cake would be like. I have a Pinterest board with ideas for that.

Many of my perfect birthday cakes since childhood and through my life so far were chocolate. Some were traditional chocolate cakes, others were chocolate cake covered in a chocolate mousse-like frosting. Mostly, they were cakes bought at the supermarket. I’ve eaten English birthday cakes and Spanish ones.

Spanish cakes are sweeter. There always were lots of cake shops around us, but more have opened in recent years,

I’ve talked about magdalenas before, and I love milhojas. Pastelerías Mallorca and the Tarta de Chocolate and Tarta Tres Leches from Cuzco Lupita are my favorite Peruvian desserts.

Before I get too distracted by other sweet treats, let me get back to the birthday cake. One of my cakes was a vanilla and caramel ice cream cake.

Since my birthday is three days before Christmas, and it’s a Peruvian tradition to eat Pannetone on Chridtmas morning for breakfast, for many years we’ve bought pannetones. We have saved the chocolate one for my birthday. It has chocolate chips and chocolate cream.

The most perfect cake so far in my life was my wedding cake.

This may sound like a cliché, but it’s true. It was a rich chocolate cake covered in cream colored yogurt icing applied to look like roses and there was an edible silver cake pearl in the center of each flower. We had cupcakes based on the same rose and pearl design. They were carrot cake and lemon cakes. The frosting was yellow for the lemon cakes and a peachy orange color for the carrot cake ones. The bakery was one I found online and it’s called Wicked Sweet. I think it’s the best one in Madrid so far. I did so much searching for cakes, and this place had the yummiest looking ones and flavours I love.

I was so tempted by the Chips Ahoy cookie cupcakes, but am happy with the cake choices I made. All the flavors were natural and there was so much cake we were eating it long after the wedding.

We asked if they did cake tasting sessions but they didn’t. We bought a slice of chocolate cake and one slice of carrot cake. The taste of the cake bought me back to my aunt Karen’s kitchen. Carrot cake is one of my all-time American cake flavours.

My perfect birthday cake would be a chocolate cake with marshmallows, chocolate chips and caramel as well as cookies. The cake would be surrounded by cupcakes and decorated with edible rose petals and real pearls.

Or, if it were a themed cake, it would be a Chanel-themed cake with a bag, lipstick and Chanel perfume in frosting. Or a leopard print cake.

If we are really talking about personalizing the cake, it would have all the following things in frosting:

A figure made to look exactly like me, and another which would be my identical twin sister Natalie, as my birthday was also hers. Or, even better than a figure, a holographic video playing on a loop to show what it would be like if she were here with me. I’d be able to keep this video forever. There’d also be a video of all the pets I have ever known and other people who are sadly no longer with me. And of everyone who supports me now.

Disability awareness ribbons in green for Cerebral Palsy, yellow for hydrocephalus, white for visual impairment awareness, and purple or prematurity awareness. It would have a frosting photo of my “I’m as brave as Herbie” badge/ button I was given after shunt surgery in the John Radcliffe hospital in Oxford, England.

Some items of makeup and clothing

Jewelry

A bottle of perfume

Shoes

Audiobooks

A draft of a book manuscript

Or course, a cat and a horse would be there, too. As well as the emblem for the Riding for the Disabled (RDA) who helped me embrace my passion for horses and riding.

The cake would have flags to represent each country I have ties to: the UK, Ireland, Spain, the US and Peru. There would be a globe to represent my love of Geography, as well as a degree scroll and the University of Reading’s emblem. It was where I spent some of the best days of my life.

The entire cake would be sprinkled with edible gold glitter and have purple on it somewhere. And, of course, the cake would be chocolate.

Frosting options: purple, a leopard print design. I’d also have liquid chocolate and caramel fountains. Hot fudge sauce and brownies may also be somewhere.

Can you tell I have a sweet tooth?

All my perfect birthday cakes would represent everything I love and would just be, well. Perfect. I don’t know which one I’d choose. Can I have all of them?

Describe your perfect birthday cake.

Bloganuary Day 27: What are the pros and cons of procrastination? #bloganuary

What is the definition of procrastination?

The Oxford Learner’s Dictionary defines it as:

The act of delaying something that you should do, usually because you do not want to do it

The Cambridge Dictionary defines it as:

To keep delaying something that must be done, often because it is unpleasant or boring.

I find that with the needs I have because of my disabilities, I often cannot afford to procrastinate, because I depend on others for physical help in daily life.

I have things I love to do:

Blog, listen to an audiobook, shop online, watch a TV show I love or have a pamper session with makeup and perfume or explore somewhere I’ve never been before as well as going to the park.

I find the pros of procrastination mean I take my time to really pick books I want to listen to. I like knowing I have so many ebooks and audiobooks, but sometimes the sheer amount of books I have causes me to procrastinate more.

If I can’t decide on just one, I end up listening to more than one at once.

I love clothes. We have been avoiding physical stores since the Pandemic started, and clothing can be hard to find. Firstly, because I have specific tastes in clothing. Secondly, because not everything looks great when you’re in a sitting position. Thirdly, because finding lots of things I love makes me indecisive and procrastinate more.

I tend to procrastinate a lot if I know we have so much to do, and I don’t know what to start with. I have been anxious since I was a child, and it makes me feel emotional and sad when things go wrong.

Fear of how things would go or of things going wrong used to stop me. I find it’s best to face a situation head on. Because it makes me feel braver and stronger. Whenever I feel unsure about things, I dictate a list of what I want to do into my computer and the pros and cons of doing it then I decide what I am going to do. I think about it as many days as I have to until I feel that I’ve made my best decision I can. I talk things over with my husband if I’m unsure and we try and come to the best decision that we can if it’s about something that concerns the two of us.

This helps me feel better about the decision and how I decide what I am going to do.

I also prioritize what the most important things are and leave the least important ones until later.

I can’t procrastinate if there’s a deadline because I need to meet it. There have been some times when I’ve needed to present papers in order to get something before a certain date, or some competition that I’m doing that has a date. I don’t let deadlines overwhelm me.I plan around them.

I have the attitude that what has to be done has to be done and that’s it.

This is especially true when it’s something to do with my health or well-being that is beyond my control, for example a medical test that needs to be done and that I can’t get out of. If it’s a difficult test for me I will find the way to do it the best way possible for me and discuss my fears and worries with my doctor. Procrastination in some cases can be harmful and so it’s good to have the right advice.

I believe, that it’s a question of taking the bull by the horns and just taking chances and this helps procrastination be less.

Regret is the worst thing ever. There are some things I do regret for example, through no fault of my own, wasting time with people who, in the end, didn’t really know how to help me and didn’t have the experience to do that. We did not know there were better professionals out there.

What I don’t ever regret, especially recently, is looking for someone else’s help if one person does not help. We give people a timeframe (say a week or days depending on what the situation is) to help and if they do not, then we assume they aren’t interested for some reason and we move on to someone else.

So you see, procrastination can be both a blessing and a hindrance.

I think if you want to know how to make it work in your favor, you have to work out how to make the best use of the feeling of procrastination and change your mindset and say “I don’t want to do this right now but I have to” or “I have no choice but to do X if I want X”.

I often have to say “Well, OK” even when I’m not feeling very sure about things because it’s something that I really need to try and achieve, it’s something that I really need to do or if I don’t do something it will adversely affect me in some other way and I don’t want to be experiencing that unpleasant experience because of something that I didn’t do at the right time.

I always ask myself “How do I know if something is going to go well or not if I don’t even try?” It’s a great feeling when things go well even though you haven’t expected them to but because you took a chance and did something that made you feel out of your comfort zone even though you were really scared and unsure then when you achieve it can make you feel really proud.

One of my mantras is “Feel the fear and do it anyway.” My husband always says” You did adaptive paragliding with someone twice and you did adaptive horse riding, both of which are risky, and you can’t do X or are scared to do X?”

Then I’ll think of the time I did paragliding, how scared I was at first, but then how when I was in the air I felt amazing and how the excitement and adrenaline chased away all my anxiety. How I wanted to do it again. And how I did some years later.

How I struggled to do adaptive horse riding, but how I trusted in the fact that the horse knew me and my limitations since I rode the same horse and how it trusted my voice to guide me where we needed to go. How, when I was on the horse, I felt free. I turned up to every class and did my best. I still fell off the horse. I got back on and never gave up. I did not let a riding instructor’s bad day ruin my love of horses.

I don’t ever let the negative people in my life win. Because when I lacked confidence, they did. I treasure the positive people, my supporters and angels who never stop thinking of me. You know who you are.

Procrastination has had no place in my life when I removed the toxic people from it. So it has made me more determined to only surround myself with good people.

This is how I have achieved many things that I have been scared of and I know also what it’s like to be so scared that you just don’t really know what to do and no matter what people want to help you with or do, you just still don’t really know what to do and this can also be really negative because it can lead to procrastination.

I know what despair and desperation feel like.

I always say there’s a light at the end of the tunnel.Or We’ll get there eventually.

When procrastination is threatening to overwhelm me, I think of what I achieved when I did not procrastinate or found a way through it.

I want everyone to know that the helplessness that some situations can cause is through no fault of your own and it’s not just a case of saying “You can do it, don’t be doubting yourself.” Because it’s so easy to let procrastination win sometimes because the fear of getting things wrong, or that things are boring and unpleasant makes them too tempting to avoid.

A tactic I use when something is boring is to try and make it more interesting. I promise myself a reward, like if I do this then I will get to listen to chapters of a favorite book, book or after my stretches, I’ll watch a favorite TV show or movie ot relax. Or if I’m dictating something for a writing project and I find the editing part boring, or tiring, or I can’t don’t want to do more for that day, I’ll put vague ideas in brackets by the part I want to change then I’ll come back to my project another day or time when I want to.

What are the pros and cons of procrastination?

A Good Day Plus Wheelchair Positioning Evaluation Update

Today has been the best day in a long time in our fight for my wheelchair accessories. It was the first time we got past the “please send us a quote” phase. Because we actually got the quote. We accepted and the Occupational Therapist is going to allow me to trial things.

I am SO glad to have found someone experienced enough to work with me and recognize my complex needs instead of lying to us about their experience, not sending quotes like the others or not even replying to emails and not explaining whether they could help or not. I’ve been very concerned about where we’d get help, so has Alfredo. I have always had the feeling that people were nervous or scared about my disabilities and how they affect me and like I was “scaring people off,” either by mentioning the names of my disabilities, or by further explaining how they affect me, and even more when I explained what I needed.

We say today our prayers have been answered after all this time by someone willing and able to say yes to me and my unique needs instead of ignoring me completely. I believe the people who help me are angels. We prayed hard that we’d get results.

I sent off my entry for the Start Strong Challenge by AutoCrit. And it was day 26 of Bloganuary. The subject was languages, something I love to talk about.

We watched the movie Wonder which we’ve seen more than once. It’s great movie for spreading disability awareness.

I’m currently listening to Tilly’s Tuscan Teashop by Daisy James, which will be on my blog on Saturday. Her books are feelgood and I can’t wait for this new series.

Wheelchair Positioning Evaluation: Third Time Lucky?

Today, we went to a different wheelchair dealership. It was only 5 degrees when we left to go, but it was sunny and so looked beautiful.

We got to the shop and had to wait a little. A worker started talking to us and took us to an examination room.

The lady we were talking to (who it turns out is an occupational therapist) was knowledgeable and noticed my in-turned feet (even in my winter boots) scoliosis (curved spine) kyphosis (hunched back) and lordosis (abnormal inward curve of the lumbar spine). She noticed that my lumbar lordosis is also cervical. I wasn’t shocked about this, as I half thought it would be given the other spinal deformities I have and the amount of neck pain and pain at the base of my skull I live with daily.

Again, we saw that:

My current seating system (backrest and cushion) is not doing what it needs to to support me

That my head/neck positioning is not good, and it’s expecially important to get that right for me so my head and shunts are well supported.

That this and overall body positioning is a challenge for me and that the postures I adopt are very exhausting for me.

She’d heard of the products I am interested in which is great. I talked about my having been a preemie at 29 weeks and my brain bleeds and resulting diagnoses.

We also talked about batteries and my wheelchair motor which sounds like a vacuum cleaner but the chair still moves well and as it should do.

We also talked about a future new powered wheelchair and the complexities of head and foot positioning for me, as in as well as shoe holders, a knee support for my left knee to help how much it turns outwards and falls to the side since I can’t control this on my own. She said because my feet are severely rotated, foot holders may not help the deformities completely but they will stop my feet falling off the footrests when the wheelchair moves and buckles will be better protection against spasms than velcro straps. I told her about when I had custom footrests and velcro straps and the force of the spasms ripped the straps open.

She said she was familiar with this happening in people with CP who have spasms.

She noticed when I was tired and I thought she was very patient and understanding.

I was tired when we got back from another early start, but it was a good day.

We are feeling good about today and hopeful and glad that the store workers are also occupational therapists.

Sunrise Medical Jay 3 Deep Contour Dual Valve Wheelchair Cushion: 4 Years On

I remember how excited I was to get this cushion in 2018, and I still like it for comfort. It’s a cushion with a mostly foam structure, and a well at the back. I have the dual valve air cushion as my posture is very assymetric. I stil rate this cushion as the most comfortable one I’ve ever had. It withstands a lot and the ROHO air insert is comfortable and none of the air cells has burst or needed any patching up at all. I have not needed to replace the air insert at all.

I’ve been up steep slopes, up and down city streets, in and out of hospitals, health centres and supermarkets and over some areas of uneven sidewalk and cobblestone areas (which would usually have me telling my husband to avoid those areas when guiding my wheelchair).

Everything has been comfortable with this cushion And sometimes we’ll have the wheelchair speed set to 4 or 5 (5 being the highest speed, the equivalent of 3.7 mph) if we need to get to places quicker or are on a wider street or in an open area of the park.

I have, on occasion, even almost fallen asleep in my wheelchair with this cushion (either at home or almost during long waits at the hospital).

The unfortunate thing is that I was on the Sunrise Medical site around a few months ago, and couldn’t find the 2 air valve version listed on the order form. only the 1 valve version (standard cushion).

I quickly sent a message on Facebook. A month later, Sunrise Medical replied and confirmed that the cushion in the 2 valve version was not sold anymore. I’d asked about their custom service, Jay Your Way, as I have positioning wedges on my old Jay3 cushion and wondered how to fix them to the new one.

I’d spoken to the rehab doctor who’d suggested I sort out the issue of the positioning wedges at the wheelchair dealership. I found the wedges helped a little with my leg positioning, but that years being transferred onto and off of the cushion had made a hole in the cover of my last cushion. We took the decision not to put any wedges on my Jay 3 foam-air cushion, and that’s saved the cover. I also noticed that the wedges were creating pressure areas for me.

Not having wedges on the cushion felt strange at first. People in evaluations have seen that the Jay 3 cushion is not a good cushion for me positioning wise, and nor is the backrest. And they have seen I’m exhausting myself because of my postures and how they are naturally.

I picked the Jay 3 cushion with a technician as it’s a skin protection.and positioning cushion for people with complex positioning needs who are unable to reposition themselves. Of all the cushion filling materials I’ve tried so far, I prefer air.

Anyway, this cushion will be used for as long as can use it for, and I now know that I won’t be able to get another one, and nor is it advisable for me, as I need more posture support, although this already has a good level, but the evaluations have shown it’s not enough for me. The problem is : I can’t sit properly, so that needs to be adressed with my seating and I need seating that will relax me as I have tight muscles and weak ones.

I’m glad I bought this cushion, as I was cusious to find out how Jay foam bases and ROHO air inserts worked together. I know ROHO has a cushion with foam and air very like this, plus extra support at the front of the thighs called the ROHO Hybrid Elite and it has 2 air valves, but it turns out I need more highly contoured support for my pelvis and legs and not just the ability to adjust air levels between left snd right within.a cushion.

We tried the option of adjusting air with 2 valves, but apparently it does nothing for me.

So, now I’m thinking back to ROHO’s Quadtro Select High Profile cushion, although some technicians advised against this, as they thought an all-air cushion woud make me more unstable. I also know I am very unstable on the Vicair cushion I have, which I don’t use anymore.

So, it’s frustrating to find that, while air feels more comfortable to me, as in reducing pain and feeling good to my body with it’s deformities and unique sitting posture, as well as altered levels of sensation, I don’t know if another air cushion is a good idea.

Since the consensus is that I need seating that will help me relax. and so far, foam, gel foam-gel and foam-air hasn’t done that. I did find though, that air did not react to temperature at all, so I didn’t feel cold with it like I did on winter days with a gel cushion or gel-foam cushion.

I definitely rate the Jay 3 deep contour dual valve air cushion in terms of comfort and helping to lessen vibrations from the wheelchair moving over uneven ground.