One of the areas I frequently blog about is Scoliois because I am living in constant pain. The pain does vary day to day, but it is always there.
At the moment I am sat in my comfy chair whilst trying to rest my back. I am wearing 3 layers, one if which is a long hoody which is quite fleecy. The chair has a throw over it so no cold air can get in where the arms of the chair are. I am considering putting my dressing gown on. Hang on…I have my dressing gown on now.
One of the problems I have mentioned before is the change in the weather causing me to have long periods of pain, mostly occurring more profoundly over the winter months.
I wish more people understood chronic pain. I wish people understood that I take painkillers on a daily basis because that is a way for me to manage my pain. I wish people understood that I do go to physio and I do have a sport massage to reset my muscles. I wish people knew I can’t just get on with it without adapting my day to suit my pain.
Chronic pain will always be there no matter what I do. Also just because you have the operation done to correct a curved spine does not mean that the pain will go away. It will still be there in some form.
For those of you living with the impact of Chronic Pain, remember you are not alone. Your frustration and anger surrounding your pain is completely valid and I also know that hearing this does not make it any easier.
Knowing what can make it easier? I really don’t know. This blog was just written because I am having a pain day and wanted to write about it. I wanted to share my thoughts to get them out there. Scoliosis is a difficult thing to live to live with. Especially when you were told as a teenager it wouldn’t get any worse and you probably don’t need the surgery…then when you’re in your twenties you’re told it is severe…. What are you left with? Anger… frustration… sadness…. But hay ho…. We carry on.
Over the past few weeks I have been enjoying the Rugby League World Cup. The world cup is being held in England which is amazing because I don’t have to worry about time zones and missing any games.
I love rugby league and soon as I knew England were going to be hosting I wanted to go to a game. My brother bought us tickets for a semi final at Elland Road for my Birthday, my Birthday is not on this day. Then I got a new England shirt designed for the world cup.
As we all know the pandemic hit and the games were moved into the next year. Now they’re finally here I am able to enjoy all the rugby league I want.
One of the best things about these games is that they are all happening at the same time, Men’s, Women’s, Wheelchair games and for the another first the Physical Disability Rugby League World Cup. Which England have won. Which is incredible.
As a Disabled person who is also a woman this makes me very happy. The BBC and the RLWC organisers have ensured that all major games are being shown across the BBC. This means they are getting air time to all games. Showing everyone that Rugby League is a game for all.
Next Friday we will be setting off into Leeds for some food and then going to Elland Road. I am really excited. I am aware that as a Visually Impaired Person it might have been better to watch it on TV so I can see and have the commentary. But my brother got us great seats, not too far back and close to the try line so we should see some amazing tries. Plus when you have an opportunity to see a World Cup you take it.
Over the past few weeks I have been following on Twitter and the fans are really getting behind the games which is great to see. We’ve also had some amazing commentary from some incredible legends of the game such as Robbie Paul, as a Bulls Fan this has been great to have him commenting. Tanya Arnold has been brilliant with championing the game in general and I’ve enjoyed her commentary throughout.
I have also found Andrew Voss’s commentary to be brilliant, not just on the pitch but his V ratings of some of Englands finest foods- he didn’t get all the extras when ordered a kebab so he rated it as poor. He was told he would need to order it again add the sauce and salad. Vossy also loved the ever humble Greggs sausage roll.
The other first which I have enjoyed is Kasey Badger refereeing a mans game for the first time! Incredible work and the responses to this on Twitter were incredible.
Me and my friend were going to watch the first women’s game at Headingley, England v Brazil….but unfortunately we were both working. I watched Australia v Cook Islands on iPlayer for their first game and the tries just kept coming! Pelite just couldn’t be stopped.
Can you tell I love rugby? If you want to see more about this incredible World Cup of firsts follow this link.
As I say the commentary has been wonderful and I have really enjoyed it. I love rugby and the community within it. Here’s to the start of the Wheelchair games this evening. Claire Balding is out supporting the team as she is the President of the RFL Council. Come on England!
Are you enjoying the rugby? Let me know. Twitter: @PhilippaB
Last week I went to the theatre to watch Joseph and the Amazing Technicolor Dreamcoat. I have now seen it about eight times. Whenever it comes to our theatre I always try go watch it.
When we got there me and my mum had a sandwich and a coffee. Before we went in I got myself a Joseph t-shirt. I have never bought anything from a theatre performance before.
When we went in to take our seats a woman came over and asked if we knew that the performance was Audio Described. I said we did not. They then asked if we would like to have a headset to follow along with the show. I said yes and went to sit down. Once we were sat and the lady had come back to give us the little black radio and headset a man came over and introduced himself. He mentioned he was the Audio Describer and explained how it would all work.
The theatre slowly filled up and there was a lot of chatter as there were a number of schools in the audience. As we wandered along the row to find our seats I heard one of the children go ‘woah…’ As I wandered along with my cane. I realised as we sat down I was sat near one of that schools teachers. I hope that if any of those children ask any questions about my cane that they are able to do so.
If you have questions about cane I am happy to answer from my own experience or if you check out this link you can see a variety of canes.
The performance itself was lovely, lots of the cast were children which was great. It shows those in the audience that if they have a passion for acting they can do it too.
Before the show started the Audio Describer was setting the scene and giving a general description of the story itself. He described the stage as ‘a starry nights sky’ He explained about all the different bothers and gave descriptions.
He would also explain about the usher who was holding up a sign asking for no photography of the performance.
I had never watched an Audio Described Performance before and found it to be very accessible. It was great to be able to watch and not have to figure out entirely what was happening on stage. The descriptions did not interfere with the songs and they were very well timed.
The experience itself was amazing, the fact that someone came up to me and asked if we knew it was Audio Described and checked that we wanted it was brilliant. As I say I have seen Joseph eight times and I have now seen it with another perspective. I felt very included.
At the end of the performance the man who was Audio Describing came back over asked how I found it. I told him it was brilliant and I had a whole new experience of Jospeh. I also mentioned that it was great that there was a school who had a child who also got to take part in watching the performance because he was there. It’s brilliant that they were able to take part with their class.
Inclusion is all about making everyone feel welcome by giving them the accommodations they need. Making the person feel included and it being seamless. I was very happy with the experience I had at the Alhambra Theatre and I enjoyed it very much.
One thing which has come to my attention lately is the lack of awareness around long Caines and what they are for.
As a visually impaired person who uses a long caine I find it rather difficult when people do not acknowledge my caine.
I use a long white cain with a roller ball on the end and a red handle. My cain is there as a symbol to others that I am visually Impaired and need extra space and time to navigate my surroundings. It is also there to allow me to feel what is going on around me so I can navigate safely.
For example I can use the cain to discover a change in surface so if there is a dropped curb or some steps I can use it to tell if there is something blocking my path and which direction I need to take to avoid this obstacle.
One very important thing to note is that I use the caine in my right hand as that is the side I see nothing out of.
If you see a person with a long cain please give them the space they need to navigate safely, do not grab them, do not jump over their cain. If you think they may need help just say hello and ask ‘do you need a hand?’ I personally do not mind if someone asks. I would rather be asked and politely decline.
Before we are let loose with our Caines we go through training. This allows us to learn to use the caine in a safe reliable manner. We have to learn to navigate steps, curbs, changes in terrain (oh yes on and off road) we learn what tactile paving means what. So we know if where approaching stairs, a crossing (what kind of crossing) or even if we are approaching a train platform.
Caines are not cheap either so this is why we ask that you don’t leap over them, as you could hurt yourself and in the process damage our caines. Or us. Ouch!
If you would like to learn more about being Visually Impaired please follow this link to discover more of my post about being visually impaired.
Todays blog will be all about Dyspraxia which I have written about before.
But just incase this is the first time you have seen my blog or you need a recap of what Dyspraxia is let’s recap. According to the NHS UK website “Dyspraxia, also known as developmental co-ordination disorder (DCD), is a common disorder that affects movement and co-ordination
Dyspraxia does not affect your intelligence. It can affect your co-ordination skills – such as tasks requiring balance, playing sports or learning to drive a car. Dyspraxia can also affect your fine motor skills, such as writing or using small objects.”
Living life as a Dyspraxic person can be difficult as it can be very noticeable. We don’t move in the same way as others and we have to put in a lot more effort to do general tasks. For me I find things such as tying shoe laces to be quite difficult. I remember sitting on my grandmas step trying to tie my own laces when I was little but becoming rather frustrated that I could not do it. Even now I struggle with laces which means I take longer to put my shoes on.
Other people may find doing general tasks such as pouring a glass of water to be pretty straight forward. For Dyspraxic people we will find it quite challenging as judging distances from the bottle to the glass then ensuring we have a good grip on the bottle could go very wrong very quickly. I remember a time when I was pouring water at a restaurant and just poured it all over the table. I did not realise this and then my Mum pointed it out.
Growing up being very different to others in your class is very challenging. One of the more difficult things is taking part in PE. As Dyspraxic people we struggle with co ordination which makes activities such as sport very hard. I was never very good at PE. This always meant being picked last.
All of these things can lead to making life challenging as day to day tasks are not simple. You have to think a lot more about what it is that you are doing. Meaning you are using up a lot more energy just to do the basics.
This means you will need to find ways of getting things done in a different manner, or by allowing yourself extra time to get a job done. On a morning I give myself way more time than others to do the general tasks we all need to do before we leave the house. When I was younger we would avoid shoes with laces so that I didn’t have to bother with them. Another thing we did was label draws so that when I was getting clothes out or putting them away I could read what was in there and just get what I needed. Rather than becoming overwhelmed because everything in the draws looks the same.
If you have any questions or comments please leave them below. Thank you for taking the time to learn about Dyspraxia.
The weather is most definitely on the turn. I do enjoy autumn. Currently sat with a nice cup of decaf tea. It’s after 2pm after all.
As a visually impaired person something I try to do is get things that are important in different colours. These colours tend to be bright so I can spot them. For example my purse is red, my yearly planner is red and my AirPods case is red. But you can see what the problem is here… everything is red. This means when I got my new phone and had to pick a case colour I opted for orange. I don’t have anything else orange.
These differences in colour are very helpful. Brighter colours enable me to spot objects and associate objects with colours. So if I am looking for something important I can find the colour. However due to the CVI this does not always help. My brain doesn’t always interpret what I am looking at. It can’t even think of colours at times because everything is overwhelming. Therefore I may just pick something up to see what it is if needs be.
CVI is something I have written about before and when I am tired it gets worse. This is because my brain cannot handle too much information at once. So by breaking things down through describing what I am looking for things can become more accessible.
Being Visually Impaired is exhausting constantly navigating a world where there is too much visual stress is overwhelming. So by breaking it down into colours or what shapes things are can make it easier.
What tips do you have to decrease your visual stress?
Thank you for reading and have a great day. Philippa B.
It is Monday again which means it’s time for another blog post. This week I’m focusing on being a long cane user.
As you maybe aware I am Visually Impaired and use a long cane. In order for me to get around I sweep the cane across the floor in front of me to be able to find objects in my path. Including but not limited to steps, curbs, dogs and people.
Earlier this week I had gotten off the train and was making my way to the escalators. It was a busy morning and I was making my way to work. Someone was at the side of me and noticed my cane hit their leg, they looked down at my cane and continued to move forwards. The difficult and dangerous thing was that we were trying to get on the escalator. People at the other side of me noticed I had my cane, they stopped and let me get on. I said thank you.
The person who had come into contact with my cane continued onto the escalator. I continued to use my cane to navigate onto the escalator and my cane caught between their legs. Once we were on the escalator I stood my cane in front of me and waited until we reached the top.
I put my cain out cautiously to find my way off. As I did this and moved forward the same person was caught by my cain.
The difficult thing with being a cain user is that we are using it for the right reasons. To discover obstacles in our path and navigate safely. The problem comes when others pay no attention. Mistakes can be made yes, but when someone actively notices your cain and continues to not give you the space you need to navigate safely then they are putting you and them at risk.
The danger in this situation is that the person who ignored my cain could have tripped up and slammed their head onto the escalator. I could have then fallen onto them. This would have been very dangerous for both us.
Similar situations can occur when cain users are crossing roads. If people ignore our cain and step into the road or don’t move out of the way then they could cause both of us to fall over.
When out and about people tend to have their headphones in to block out all the noise around them, which makes sense. But this can also mean you’re in your own little world.
This can lead to people being less aware of their surroundings. Meaning they may miss someone using a mobility aid. Which can have serious consequences.
All we ask is that you try be a bit more cautious. We are doing what we need to do to get around. We can’t travel at quieter times if we need to get to work. We shouldn’t have to travel at quiet times.
Please just be a little mindful and don’t rush people. Getting to work can be very hectic and can create stress. But if we all just try be a little more aware of our surroundings (unless, like me you’re Visually Impaired and find this difficult) we can all have an easier and smother time on public transport.
A while ago I really wanted a nice new pair of sturdy shoes. Th reason being I have had a pair of really good shoes for nearly ten years. These shoes have started to wear, but they are still useable. I just decided I should save up and look around for a replacement.
I know a few people who have Red Wings, they have told me they are ridiculously comfortable and have never had any problems. They work with all their outfits and they look amazing. So acting on personal advice I looked online for their shoes. The prices, while expensive seemed like a good investment- if they last you the time people have assured me they will. Hear’s to ten years of RedWings.
The pair I saw online were a petrol shade of blue. The design is 6-INCH MOC TOE WOMEN’S BOOTS 3353. I sat and thought about it for a while and struggled to find places where they had them in stock for me to try on. When I am spending that much money on shoes I need it to be right.
When I went to London to visit my brother we went to the Red Wings shop.It was nice inside. All the shoes neatly on display with storage boxes stacked at the end of the room waiting for peoples new shoes to be taken home.
I wandered around and I saw the shoes I was looking at online. The lady asked if we were ok and needed anything. I mentioned looking at this particular pair online and that I was considering buying them, but that I wanted to try them on.
She brought me over the size I would need and asked if I had owned Red Wings before. After explaining I hadn’t and that my brother and some friends owned them she told me how sturdy they are and long lasting. She also mentioned the women’s shoes are made from the leather of a cow because the female leather is a lot softer. Then she explained the insoles had a soft cushion.
I laced them up which was easy, my Dyspraxic fingers were ok with the laces. They felt really comfortable as I wandered around the shop. My toes didn’t touch the ends I felt really comfy. Taking them off I decided to buy them. They were the last pair in the shop and Red Wings were not making anymore of them. That was the universe telling me to buy them.
The shoes are placed in individual bags and then placed into their big box. The lady had to get more bags sent from the mens shop. Someone came round and we placed them in the bag. My brother carried the box as we wandered off to get some tea.
The shoes were amazing and I really enjoyed the customer service. She was not pushy, she chatted to us about the brand and made it feel like a great experience. This is what I want when I go shopping. Especially when I am spending that much on shoes.
I am also in no way being endorsed by Red Wings for this blog.
As promised I will write about a few of the nice things I did when I visited London a few weeks ago to spend time with my Brother.
A few of you may already know that I absolutely love tea. When I visited my brother he took me to one of my favourite places to buy tea.
We went to Bird and Blend in Angel. The shop is down a small bustling street with little cafes and shops. The shop has a step up into it and is not too big inside. When we went in a lady approached us and asked if we would like to try a sample of some tea.
Then we had a look along the shelves which ran down the right hand side of the shop. There were big silver tins of tea all labeled up, underneath there were packets of tea in different sizes ready to be picked up. There were a few cups and bottles for iced tea. I wanted a cup but I wasn’t allowed one. I have far too many already.
There’s even more tea behind the counter and I could feel myself getting very excited. I’ve never been to a Bird and Blend shop before. The lady behind the counter asked if I wanted to see any of the teas. I asked to see one of my preferred bedtime teas, Dozy Girl. It smelt lovely. Then I went through all of my personal choices when buying from them. The lady seemed happy that I had heard of them before and that I was excited to be able to visit them for the first time. They don’t have many shops up North, they are mostly Southern based.
There were some small pins on the counter so my brother helped me decide which one I wanted. I chose the T-Rex pin badge. How could I visit their fabulous shop without buying anything? You’ll be pleased to note I bought Rhubarb and Custard teabags.
The teabags from Bird and Blend are compostable so I know they are good for the environment. The pins I bought are made of metal and wood. So this is another win.
When we were deciding on a pin I was getting excited because I was really enjoying being in the shop and they were playing one of the best songs from Beauty and the Beast Gaston. Sadly though Bird and Blend do not use antlers in all of their decorating…in fact I couldn’t see any anywhere.
We bought the pin and tea then we were eon our way. The people in the shop were lovely and I had a great time.
When I got home my pin badge had popped off whilst on my coat. I decided to email them to see if I could request a replacement. The reply was quick and very helpful. Someone called Ian sent me out a replacement pin and sent me one of their favourites as well.
Bird and Blend are a fabulous company who are making some lovely blends and doing it with our planet it mind. Please take a look on their website and give them a try.
Also go to their shops and say hello, they were very friendly and they defiantly know their brews. Thank you for a lovely visit.
I wrote this blog myself after a fabulous visit! I am in no way associated with the TeaRific company.
It has been a long time since I have visited my brother in London, the last time was before the Pandemic.
We decided when would be the best time for me to visit then I booked tickets to go on the train. First we had to phone for assisted travel as I am Visually Impaired and need help navigating my surroundings. I have Scoliosis and need help carrying my bags. Once we had booked the assisted travel I had to book tickets. This required phoning a separate number. We got the trains booked and I requested tickets be sent to my house. The assisted travel booking came through by email.
Going to London using assisted travel or coming back from London has always been stressful for various reasons.
For those of you who don’t know, assisted travel is a service offered to train users who are Disabled or who need assistance with their travel. You phone up, or use the Passenger Assistance app and you tell them what you need assistance with, when you are travelling and what your Disability is.
The Friday came for me to go to London and my mum took me to the station and we let someone know I was there. The lady was very helpful and told us to take a seat. We waited and a man came over to help me onto the train. He took my bag and helped onto the train. My mum got on too. He guided me to my seat, put my bag up overhead and explained where everything was and that there were people getting on at Doncaster who would be sitting next to me.
My mum and the member of station crew got off. A lady came up to me from the Grand Central train crew and introduced herself. Finally the train set off and we were on our way.
Arriving in London I messaged the family group chat so my brother could see that I was there. Even though he was watching my train come in.
Everyone got off the train and I stayed sat down. I looked around and I couldn’t see anyone who was coming to help me. I was getting stressed. I messaged my brother.
Just to make clear, when you are waiting for assisted travel they tell you that you should never be waiting more than 5 minutes for someone to come and help you. The other thing to note is that the assisted travel arrangements are with the station crew, unless something happens along the journey and then the train crew help.
A few moments later I heard some voices and the cleaner came bustling down the aisle emptying bins and tidying up. She noticed me and asked if I was waiting for assistance. I said yes and she said she’d be back. Messaging the group chat again I wrote what was happening. The lady came back and said she had told the driver.
This is the best bit. The driver contacted the station staff who had forgotten about me. Well done Kings Cross.
A man came on to get me and he didn’t introduce himself he just said ‘is this your bag?’ We went to get off and when we were on the platform he didn’t offer me his arm so I could be guided safely. He was carrying one small bag with clothes and another tote bag. But he should have guided me. He should have introduced himself with ‘Hello my name is…’
A little further down the platform the train crew caught up and said they would help me get to the barriers. I took their arm and we wandered down the platform. I explained I was meeting my brother and what outfit he had on.
We met up with him near the barriers and headed down to the tube.
I will post separate blogs about my weekend.
The Monday morning came and we got the bus back to kings Cross and arrived half an hour before my train. The station wasn’t too busy and we made our way to the Assistance point. The lady radioed through to let them know I was there. She radioed again. She radioed again. By this point I was again getting stressed. Finally after a while the LNER lady just said she’d do it herself.
She was very nice and explained we were in no rush and we will just wander onto the platform. She saw the train was in and we got on. Again she directed me to my seat. I said goodbye to my brother and sat down. He messaged in the group chat that I was on the train.
We mentioned what happened on the way down and how I was left. She apologised and said she would ring Leeds and let them I was on the train.
When I arrived at Leeds I stood up once everyone else was off and a man in a blue Northern Rail jacket approached me and took my bag and helped me off the train. We got to the Bradford train and I explained what happened at London and he shook his head. But I pointed out I have always had great service at Leeds and Bradford Interchange (and Forster Square). I sat down and had my bags next to me. The conductor asked where I was going to and I said Bradford. He said he was changing there so if no one got on to help he would assist me off the train.
Once we stopped at Bradford a man got on and grabbed my bag and helped me off the train. I sat down outside the barriers and waited for my Mum.
Every other station was brilliant, I have always had great help at Bradford and Leeds, their staff are lovely.
At Kings Cross I was left on the train, there was no assistance to meet me to help me board the train to come home. So someone else had to do it.
Staff who do the job of assisted travel should have Disability training. This is why it is not OK that someone else filled the gap. The lady who helped was lovely and seemed concerned about my previous experience and genuinely wanted to help.
This kind of scenario happens far too often and this is why I do not like travelling independently. I am Visually Impaired and use a long cane to navigate my surroundings. I cannot just get on a train and go where I want. The assisted travel service which I and many others rely on had let me down on parts of my journey.
When you are Disabled you are reliant on others to help you. These services are in place to enable us to get around and be independent. However they let us down more often than you think.
Then there are the people who do a great job in these stations who hear these stories. They are also being let down because they are doing an amazing job, but then others are letting them down by not doing their jobs properly.
As I mentioned before the staff at my usual stations are brilliant and are always on hand to explain and assist me with my journeys. The lady at Kings Cross who got me onto the train was very helpful. The cleaner who notified someone I was still waiting was helpful.
But none of that should have happened. It should have been smooth, the assistance should have been there. As Disabled people we are tired of raising the concerns and seeing others go through it time and time again. But because we are Disabled and a very marginalised community the outrage is minimal.
Imagine you can’t see very well and you have constant back pain due to a curved spine. How would you feel being left on a train when you had booked assisted travel before hand? The thought that if someone wasn’t there at the other end meeting you and had no one to also help you raise your concerns and ensure someone was helping you on your journey ?
It is not acceptable. If you have experienced this before please leave your comments below.