Tag Archives: Yorkshire

CVI

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Hello all, 

A few weeks ago we went to a conference specifically for one of my conditions. CVI- Cerebral Visual Impairment. While it does have the term Visual in the title it is important to note that your brain is the part which interoperates what you see. 

The best way I can explain it to people is imagine you’re looking at some writing in a language you don’t understand. You can see the writing but you can’t understand it. 
That’s the best way for me to describe CVI. 

It can be quite confusing and scary at times, for example if I’m crossing a road I may think it is clear, start to cross then a car ‘appears’. 

I think it is difficult for people to comprehend this and that’s why it’s difficult for people with CVI to feel like people get our condition. There is no way to show people how we see the world exactly as we do. 

Things can just magically appear because we can’t always interpret what we’re looking at. The brain struggles with this process. 
But this conference was wonderful because you’re in a room full of people who get it. They’re all there to learn something and create a community for CVI. It was great hearing people who have CVI explain similar things to what I have experienced. 

It was also great because those with CVI were explaining things from their perspectives. 

One of the things which is hard to fix is the ability to reduce visual stress. This is probably because the world is so busy and there is always something which is trying to catch your attention. Whether it’s a loud advert, or people rushing around going about their day. This creates a lot of anxiety which makes it more difficult for me to process what is going on. 

And no- don’t ask if new glasses will help. They will not magically allow my brain to suddenly interpret what is going on around me.

I do wear sunglasses a majority of the time when out and about because light hurts my eyes.

Here is a link to the CVI society. They are wonderful and a place to find a community for those of us with CVI. I would recommend checking them out and using their resources. CVI can be very difficult to explain, so being able to connect with people who have CVI or their allies is really important.

We had a great day meeting some amazing people who were sharing their stories and information around CVI. I had never met anyone else with CVI before so it was brilliant.

Have a great day! 

Christmas

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Hello all,



It is coming up to Christmas time. Which means everything will be getting busier and there will be more going on around us. Which can be great but for those of us who are Visually Impaired or Blind it can be a bit more difficult.

There are lights going up and Christmas trees being decorated, shops are filling up with more of their Christmas stock. This can all feel quite festive. I do enjoy Christmas and giving presents to people. It is nice to get together with family and friends and to have a catch up.

What can be difficult is the Visual Clutter. At home we have everything where we normally put it so it’s not something new in a new spot.

I don’t really enjoy shopping as it’s busy, so we go when it’s not a weekend day. This makes it easier as there are less crowds. Shops will often have a move around of their stock at Christmas to utilise space. But when you go in and nothing is where it was before it’s quite disorientating.

This is another reason to go when it is not busy as you can take your time and not feel rushed. Top tip for the Visually impaired and Autistic shopper, go when it’s not busy so you are not feeling rushed.

Christmas can be great from a sensory perspective, that’s why it’s important to get it right for yourself as a Visually Impaired or Autistic Person. Take the time to not feel overwhelmed and to do it at your own pace.

Once all our decorations are up I’ll try make a post with you showing what it can look like if you have Nystagmus.

I find when shops have a lot out it can be very overwhelming. I find there’s too much stuff. I get it, it’s commercialisation, but sometimes there’s just too much going on.

Enjoy your Christmas season and all the merriment it can bring. If Christmas is hard for you, then make time for yourself and do what you need to get through. It can be hard this time of year.

Thank you for reading.


I’m on Threads @VisuallyImapiredPip

White Cane Awareness Day

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Hello all,

Hope you are well. Some of you maybe aware that October 15th is White Cane Awareness Day. If you are aware then hurray for you. If you are not aware then well, you will be soon.

What is a white cane and who uses them?

A white cane is a mobility aid which empowers a Disabled person to have independence. This does not automatically mean that they can travel alone instantly. It takes a lot of work.

There are multiple forms of white cane. There is a symbol cane, which is held by the Visually Impaired Person to indicate that they are Visually Impaired and may need more time and space, or might require assistance.

The other cane is a long cane. This cane is used for the same reasons as above, but the person using it is using it to navigate their surroundings. It enables them to gain tactile feedback.

You may have seen some canes come with red and white stripes. These indicate the user is Deaf Blind.

I used to use a symbol cane but now I use a long cane. I find it works better for me as I have little to know peripheral vision. As well as many other things.

A red cane handle in the foreground. Behind is the ocean with some rocks.


Do I need my cane even if I am with someone?

Yes. My cane is something I use even if I am with someone. It allows me to let people know I need space and additional time. As well as it helping me to navigate my surroundings.

Why do we need long cane awareness day?
 
We need it because of the amount of people who chose to ignore us. There are people who will ignore our cane and step over it. They will push in front us on trains and rush to the disabled seating. They will then giggle about their ignorance. FYI. Not all long can users are completely Blind. We have limited vision.

The other day I was getting off the train and someone was getting on the train and chose to step right in front of me. I am not moving. I have had it before where people will refuse to move. Why? If you think you’re being clever…you’re not. Please refer back to those who think it is ok to rush to the Disabled seating and giggle.

We need White Cane Awareness days because of peoples lack of knowledge and more importantly peoples lack of acceptance.

You may have the gift of sight. Which is wonderful for you. Some of us do not. If people had to spend even half a day in the shoes of a Visually Impaired or Blind person they would soon change their attitude. This is also not the same as wearing a blind fold for a short activity as it does not accurately represent our day to day struggles.

Our canes give us mobility. They help us to navigate the world in a safer manner. It allows those around us to ask if we need help. I often hear people ask ‘I don’t know if I should ask if you need help?’ I always respond with ‘I always appreciate when people ask because I might not be in a position to ask for help. It is always better to ask than to ignore. I appreciate it’. This way you are acknowledging the persons Disability without taking away their independence.

Please just be mindful of white canes, or any mobility aid for that matter.

Have a great day.  

You can find me on Threads @ViusallyImapiredPip

Cheep Cheep Bath Bomb

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Hello all,

I thought for this post I’d write something a little less depressing and not around benefits. Well, it will talk about the benefits of bath bombs…

A while ago I decided to treat myself to a Lush Bath Bomb. I looked to see what they had that was new and decided on one called Cheep Cheep. I believe it is part of their spring and Easter collection. 

The bath bomb is small and shaped like a little chicken. You can feel the little nose and the wings at the side. It even has some little feet.

A yellow bath bomb shaped like a chicken. Being held over a running bath.



The ingredients on the Lush site are: Sodium Bicarbonate, Citric Acid, Popping Candy, Tapioca Starch, Fine Sea Salt, Bergamot Oil, Lime Oil, Violet Leaf Absolute, Titanium Dioxide, Water (Aqua), Dipropylene Glycol, Alpha-Isomethyl Ionone, *Limonene, Perfume, Colour 47005:1.

I find anything lemony is a good choice because it feels nice and refreshing. Once you have run your hot bath just drop it straight in and watch as it fizzles in the water. You can also hear it fizzing away. 

The cost was only £3.50 so in comparison to other bath bombs it is one of the cheeper options.

Sometimes it is nice to just have a good soak and relax.

Have you tried any other bombs lately? If so what are your favourites?

If you would like to try this bath bomb follow the link.

Thank you for reading,
Philippa B.

No I am not being endorsed to write about this bath bomb. 

Scoliosis and the cold

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Hello again,

The weather is getting colder which means my back is hurting more and more. It is not just my back which hurts with the cold, but my joints ache too.

I have to keep going for my sport massages. These are really helpful because it helps to reduce the tightness in my muscles. This means I can move around a bit easier and feel a little less pain. I then have to keep doing my physio exercises to help keep the muscles and joints as usable as possible.
However, this is just a continuous cycle of sport massages, physio exercises and pain relief.

Due to my curved spine I will always be in some level of pain. It is just about how I manage it. There is no full solution to Scoliosis, which is what the condition is called when you have a curved spine. Even if you have the surgery to correct your spine you can still have to deal with the pain.

Currently I have pain in my right shoulder and neck which then runs all the way down the right hand side of my body. I am trying to keep warm today as it is due to snow heavily later on. The temperature is currently 1.

I am not a fan of the cold due to the high levels of pain I have to put up with. I wish people could understand a little more about the constant pain people with Chronic pain have to deal with.

I am going to go do some other things and get on with my day. Stay warm and safe.

Thank you for reading,
Philippa. 

Motion sensor

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Hello all,

As the evenings and mornings are getting darker I thought it would be a good idea for me to buy one of those motion sensor lights.

They will actually come in handy all year round.

I bought this one from the RNIB, click here. It is motion activated, it can double up as a rechargeable torch and it can also be left on all the time if the user prefers. I don’t think we will use that setting though.

The first one I bought I put at the bottom of the steps. It turns on when I reach the bottom step which is ok. It also turns on when you’re about 4 feet away in the other direction.

It is quite bright which I normally dislike. However because it turns off after a few moments and only lights up the floor area that is OK.

I then decided to buy one for the kitchen to make it easier to find one of the light switches.

They have been in use for a few weeks now I am really glad I bought them. They make it a lot easier and safer to navigate when it is dark.

One of the best things about it is it automatically turns on if you have a power cut. Which is very useful. If you are visually impaired I would recommend buying something like this. Along side a few battery powered torches which you can place around your home. It is much safer than a candle.

No I am not being paid for this post. I just really liked my purchases.

Let me know what other safety tips you have for navigating in the dark.

Thank you for reading,

Philippa B.

Benefits, what now?

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Hello all,

I thought I’d drop in and post something as I am aware I haven’t posted anything since Scoliosis Awareness Month.

Since then we have had a General Election. How fun. I have taken the opportunity to write to my MP to congratulate them on staying in office. I have also used the opportunity to raise my concerns as a Disabled Constituent regarding the proposed changes to the benefits system by the previous party.

There was a lot of talk around introducing a voucher based system instead of Direct Debits into your bank. There are many issues with this such as; how do we know who will accept the vouchers? People are supposed to allow Guide Dogs into their establishments and that does not always happen. Even if it is the law.

How can we be sure that everywhere will accept these vouchers?

Also who is to say what we as Disabled people need to live our lives? Do we not get a choice when it comes to brands for what we need to purchase?

The money which we receive finds its way back into the economy when we spend it on the services we need. Such as mobility equipment, physiotherapy and sport massages (which may not be available on the NHS but go along way in helping with our pain management), cleaners, fuel for cars, heating and powering our homes. I could go on with this list but hopefully you get the idea.

Disabled people have to pay more just to be able to exist. We need to power mobility equipment, we need to keep our homes warm, we need to be able to pay for additional transport because public transport does not always exist.

I am hoping to hear back from my MP soon. I want to ensure this Government does not add to the stress and pressure which the previous government caused. Which has sadly lead to the deaths of many disabled people.

We must protect the most vulnerable in our society and that includes Disabled People.

I will probably write more on this issue soon.

Thank you,
Philippa B. 

Scoliosis Awareness Month 2024

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Happy Scoliosis Awareness Month 

Scoliosis is a condition where the spine twists or curves to the side and it’s normally appears between the ages of 10 to 15 years. 

I was officially diagnosed as a teenager and was told my Scoliosis was mild. That I would not need to have any surgery and that if I did have the surgery it would only be down to cosmetics. A the time I decided not have the surgery as it was very daunting and I was also about 13 and would be coming up to do SATS/GCSE’s. 

One of the other reasons I did not have it done was due to all my other health conditions. Due to them not thinking it would get any worse we decided not to have it done. 

However, as I got older I found myself experiencing more and more pain. To the point at which it became a daily occurrence. 

I think had I had known that my Scoliosis would turn from mild to severe I would have opted to have the surgery. When you have a lot of health conditions it can be hard to navigate and manage them all. 

If you or someone you know has Scoliosis it is important to really consider having the surgery. It took me along time to decide against it. If you can, speak to people who have had it done. Speak to a surgeon and get as much information as you can. 

There are support groups available and you can find information online. Here is a link to the NHS page about Scoliosis. This page, Scoliosis Support and Research is all about general help and support, including pain management and finding a specialist. 

Now I manage my pain through a mixture of exercises, sport massages and physio. I also take painkillers. 

Living with scoliosis is hard and just because you have had the surgery does not mean all the pain disappears. You will always be living with some level of pain. 

Thank you, 

Philippa B. 

PIP what is it for?

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Hello all, 

There has still been a lot of negativity in the news regarding Disabled people and benefits. I think what is quite dangerous is that our politicians do not seem to have a clue about what our lives are like. 

An example I will focus on is Personal Independence Payment. 

A lot of politicians seemed to be going around talking about how we should make work pay. They will then proceed to discuss talking about how too many people are claiming PIP and we should change the benefits system to ensure people stop claiming these benefits and are instead allocated vouchers or grants. 

Here are a few reasons why I believe this will not work: 

Access to Work already exists on a similar basis and there is a huge backlog of claims waiting to be processed. These are benefits which enable a Disabled person to have the necessary support in place to help them access work. 

If PIP is put onto a similar scheme then those who are accessing PIP will be in a similar situation where the government is ill equipped to help process claims for items or services Disabled people use. 

But what are some of these services? 

Some Disabled people may pay for their care needs out of PIP benefit because they don’t qualify for support from the council. They may need support with anything from doing their shopping (yes Disabled people have the right the right to wander round supermarkets like everyone else) 

Not all treatments are covered under the NHS. I use PIP to pay for physio which includes a sport massage. Physiotherapy alone is not enough for my back pain. I have a curved spine and learning to stand up straight and just having better posture is not the answer. It’s a mixture of exercises, correcting my posture (within the limit of my curve) and sport massage. Without which I would be in a lot more pain than what I am with the physio  (I am currently sat in bed while I write this because my back really hurts). 

Transport is a big issue for Disabled people. Not all transport is accessible due to a number of reasons. One example maybe with bus stops and cycle lanes. As a Visually Impaired person I find it dangerous using bus stops which have cycle lanes separating them from the pavement. Therefore Disabled people like myself will opt for taxis instead of busses when these cycle lanes are in place.

How much does it cost to buy equipment as a Disabled person? 

I use a no jab long cane which enables me to navigate my surroundings while I am out and about. The jab cane means I don’t get a horrible pain in my shoulder and neck if I walk into something with my cane, because I the cain has a spring in it. These canes cost £78. 

If you wanted a standard cane you would looking at around £37. 

People will often have more than one of these items incase one breaks. I have three canes, one at work, one for eevrday and my spare. And no they are not all the no jab ones because they are expensive. 

Then there is the maintenance for your your cane. You will need to Geta new tip for it, which for some people that time can vary greatly. These tips can be around £18 for the high milage one I opt for. 

Have a look around online and see how much wheelchairs which are self propelled can cost. There not always covered by the NHS which people often think is the case. Here is one I found after only a few minutes. It is £399. 

Imagine having to pay for all the normal daily things which everyone needs and then consider these additional costs on top. 

Being Disabled costs money. They money Disabled people get does, surprise surprise, find its way back into the economy. The money Disable pound, or the purple pound is worth up to £212 billion. Imagine how much money business are missing out on because they do not always think about their Disabled shoppers. 

When you are scrolling through the news over the next few weeks as the general election looms, remember to actually think about how the Disabled Community is one you could become apart of at any moment and how would you like it if someone said ‘you should work for your benefits?’. 

Thank you for reading, 

Philippa B. 

Negative Narratives

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Hello allo, 

The government has really ramped up it’s messages about Disabled people hasn’t it? 

There has been a lot of negative narratives and harmful stereotyping surrounding our community. But where to begin…? 

I think I’ll start with the blatant lack of understanding. The government does not seem to not understand the benefits system… They do not seem to understand that Personal Independence Payment or PIP, can claimed whether the person is in work or out of work. 

Furthermore it appears as though people do not fully understand the word ‘independence’. The payment exists to support Disabled people with extra costs of living with a Disability. 

You also do not automatically get the benefit because you are diagnosed with ADHD, or a Visual Impairment etc. 

It is a horrible process which a Disabled Person needs to go through. They ave to fill out a really long form where they tell the DWP how their Disability affects them. Once they have filled in this form, and provided medical evidence they then have to go to an assessment centre or have someone come to their home and ask them really invasive questions about their daily routine, washing habits, eating habits, whether or not they have job or friends… then the Disabled person is given a score and this score then adds up to how many points they get. This scoring system then decides if they are allowed any benefits which could help them to cover the extra costs which come with being disabled. 

More often than not the person will fail this assessment and will then have the option to appeal the decision. Again the decision could come back as a ‘no sorry your visually impaired and can’t see very well, you don’t ever leave the house alone on new or unfamiliar journeys, but you don’t qualify’. 

Then the Disabled Person has the option to essentially take the government to court. This is called a tribunal. You have to go and sit in front of a Judge and Doctors and make the case that you are Disabled and just want some help with the extra cost of living and keeping yourself alive. 

The tribunal process is separate to the DWP and it is independent. It does not have any government backed companies behind it, like ATOS trying to save the government money. 

A majority of the time Disabled People win these tribunals because the people at them are medical professionals and people who practice law. Therefore they understand the person in front of them and their needs and what they are entitled too. 

Do you honestly believe it is an easy process putting yourself through all of that? So many Disabled do not have the energy or support to go trough it. Quite often Disabled people might end up taking their own lives because they have run out of energy and money to support themselves because whilst they are fighting all of this they have no benefits because they have been stopped. 

Whilst I am writing this I am very much aware of the level of pain my right side is in due to my Scoliosis. 

Do not judge Disabled People. We have just as much as right to exist as anyone else. Our lives have meaning. 

If you are reading this and were not aware of how these new policies will impact Disabled People please contact your MP and express to them your concerns. Help Disabled People to be able to just have the right live. 

Thank you, 

Philippa B.