Scoliois and Chronic Pain

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.

Thank you for reading my musings. 

Rugby League World Cup

Hello all,

Hope you’re well.

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

Travel to London

They forgot about you.

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. 

A tote bag and my folded up long cain on the train table.
All ready to go London

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.

Nystagmus Awareness Day 2022

Hello all,

Happy Nystagmus Awareness Day!

What is Nystagmus?
“Nystagmus is a complex eye condition, characterised by involuntary eye movements, from side to side, up and down or round and round. This affects the ability to focus, see the world in three dimensions and recognise faces.” Nystagmus Network.

How does it affect me?

For people with Nystagmus they have something called a null point which is a point at which they can hold their heads to reduce the amount of wobbling their eye does. Nice and simple… not really. It doesn’t stop the eye from wobbling and for myself this causes other problems, linked with Scoliosis.

If I have to hold my head at a certain angle to be able to reduce the eye wobble and try focus on something my neck will start to hurt. Which then spreads into my shoulder and then my back. This null point is not in keeping with what my posture needs to reduce the constant pain of Scoliosis. Therefore I just have to make the most of a bad situation.

How I see.

One thing which I think people would be interested to know is, what does the world look like to me? 

See the difference? It is as though there is constant motion and nothing ever stands still. I describe it to people like this ‘Imagine you have a terrible headache and you are stood up on a roundabout which is spinning. Then add to that by having to move around on the roundabout and stay stood up.

Does your head hurt? I know mine does.

Another problem for those of us who have Nystagmus is that we struggle to recognise faces. For children this can be stressful because if they can’t locate their parent in a crowd, they become stressed or panic.
This problem of recognising faces does not go away or improve as you get older. When I am out meeting friends I cannot see them until they are a few feet in front of me. Even then I may not be able to tell it is them.

How can you help someone with Nystagmus?
You can send them written information in formats they find accessible, meaning large font, or in a preferred colour. You can let them know in advance what coloured jacket you are wearing when you meet up. Or say exactly where you will meet them.

If you have any questions about Nystagmus you can drop them below and I can answer from my own perspective. Please check out Nystagmus Network for more details.

They have a wealth of information and they are really beneficial.

Remember you can follow me on Twitter @PhilippaB.

Scoliosis and Community

As it is June I will be writing another post about… you guessed it… Scoliosis Awareness.

I have only ever met 3 people who have the condition. One of them is a friend of a friend. The other is a person I know through work. They are both really lovely and it is nice to be able to speak to people who have Scoliosis as it can be quite lonely at times.

It can be lonely because people don’t always understand when you say ‘my back hurts’. People may respond with ‘oh… mine too’ or ‘have you tried Pilates?’ Please don’t do this when someone who has Scoliosis or, any chronic condition tells you their back, or something else hurts.

My spine hurts because it is so curved my spine curves into my shoulder blade. It doesn’t go underneath but it goes rather close.

The other person I know who has Scoliosis is my Mum. Her spine is not as curved as mine, but it’s still curved.

As not a lot of people know about Scoliosis is can be quite lonely. This is why it is important to share our experiences. So we can raise awareness and allow people to feel less alone.

This is important because it helps reduce the negative impact on your Mental Health. If you know there are other people out there who have the same condition as you then you can talk to them. Talking about things like diagnoses, pain management or even just activities you enjoy which are low impact. I joked with the person at work about the gym and we were both just like ‘nope…. Physio exercises are enough thank you’. These little things really do help you to feel less alone. 

If you have stumbled across this blog and you have Scoliosis please follow me on Twitter and join the community of Scoliosis Warriors. 

Sunshine and Glare

Hello,

It is getting round to that time of the the year again when I need to remember to take a hat with me when I go out.

The sun is causing a lot more glare than what I’d like.

I do enjoy summer, the warmer weather is better for my back pain. But the brighter sunshine is not good for my vision.

Hats are the best way for me to be able to move safely when I’m out, they cut down the amount of glare I’m having to put up with.

Otherwise I have to close my ‘good eye’, which means I’m left with less than 3ft of vision to see where I am going. Yes I have my cain, but I’m in pain when I’m using the very little vision in just the one eye.

It feels like someone is jamming their fingers into my eyes. That’s how much it hurts.

By wearing a hat I don’t have to worry about the glare, meaning there is less chance of me pain from the sun.

Please remember that when you see a visually impaired person, or anyone who is using a mobility aid, give them room. Be patient and let them do what they need to. We appreciate not being rushed.

Kindness goes along way.

Have a great day,

Philippa B.

Things you should not do.

Featured

Hello all,

How are we all doing today?

Normally I do not go out alone as I struggle to get to new places independently. Getting to work I do alone as it is a familiar route.

When getting on and off trains it can be quite difficult for a few different reasons, one of which is when the platform and trains are busy.

It can be very helpful when someone asks me if I need help. My preferred way of people asking is if they say ‘hello’ rather than touching my arm to get my attention. This is just because I don’t like people in my personal space.

If I say yes to you your help then please let me take your arm and the guide me onto the train. Then help me to find a seat. Once we have found one I will say thank you and that I am happy for your help.

People will ask me if it is OK to ask a Disabled person if they need help. My response is always, please ask if you are unsure. The reason I say this is because it is always nice to be asked and if we do not need help we will politely say no.

Things I do not appreciate as a White Cane user are people assuming I have no site at all and using this to think it is ok to push past me.

This week in one train journey the following happened:

The train pulled up and I was about to get on when someone got on in front of me. Then another person decided to the same. The second person did so as my cane was helping me navigate the train step. My cane caught in between his feet and he could have fallen over or I could have misjudged the gap and hurt myself. This is all because people are arrogant and want to get on first.

The train is not leaving any quicker because you got on first.

Then getting off the train I stood waiting to go through the doors from the carriage into the exit. My cain was stuck out and I was ready to move through the door. Then someone stepped round the side of me and pushed through the door before me. These doors are quite narrow. My cain got stuck between their feet as they continued to walk off the train. Once again this could have ended up in injury to myself or them.

If an injury were to occur, it would not be my fault. I have a cain for a reason, if you chose to ignore it and you fall over it is not my fault at all. You may think that’s a bit harsh, but it is not. My eyes don’t work well, which is why I have the cain, your eyes work, so please use them.

Please be respectful of Disabled people, well everyone really. Personally I think if you were to ask if someone needs help it is OK to do so. As long as it is coming from a good place then it is all good.

Thank you for reading.

CVI

Hello again,

Thought I would drop in. I was wondering what to write about and then I decided. My horrendous eyesight.

So the other day I was helping to put stuff away after shopping and the front door had been left open while we bring stuff in from the car. I heard a noise which sounded like a bell. I turned around and looked towards the door. There was something there, I couldn’t make out what it was. So I was startled. The mystery thing then moved. My eyes refocussed and I realised it was a cat.

The cat was black and white and our carpet is a dark blue, almost black. This is what made the cat more difficult to see.

One of my eye conditions is Cerebral Visual Impairment. My brain and my eyes do not always communicate with one another. Which leads to instances like the above where I can be looking directly at something but my brain just can’t understand what it is at all.

This can be very dangerous when crossing roads.

When I realised it was a cat I saw it turn around and move back outside. I went to close the door. We do not have a cat so this is why it was startling because it was out of the ordinary and clearly my head had no idea was to do with the information.

The same thing happened again this morning. I was putting on a fleece and a small moth was on the sleeve, I did not realise and then it moved onto my hand. I flapped my hand and it wouldn’t move. So I flicked the moth off and it disappeared.

It is very difficult when you can’t see but when you have CVI its all confusing because you are looking but your brain is just not doing what it should be with the information it is receiving from your eyes. This is very exhausting.

Please follow the link to the CVI Society to learn more https://cvisociety.org.uk

I am off to enjoy a nice cup of tea and watch some TV. Enjoy the rest of your afternoon.

Thank you,
Philippa B.

Being Sociable when disabled

Status

Hello all, 

It’s been a while. I’ve been enjoying some time away from my blog and it’s been nice. 

One thing which I am very excited about is the summer coming. It is always nicer when the weather is warmer and we can spend more time outside. The other thing I like about the spring/summer is that the days are longer. This means I can try and go out a bit more than I would in the winter months. Being visually impaired means I don’t do well in the dark. Having scoliosis is also another factor which stops me doing stuff in winter. The reason being my back hurts more due to the cold. 

But spring and summer are on their way. 

The other day I got to meet up with my friend which was lovely. I have not seen them in a while. We went for cake and had a wander.  It was lovely to catch up. 

I struggle to get out at times as I get quite tired with work. This is frustrating as it leaves me with little energy. So I often feel as though I can’t see my friends as often as I would like. But this is one of the problems when you’re disabled. I am always grateful to my friends who are understanding of this.

This problem of not feeling able to socialise as much as I would like is something the disabled community is not new too. We all have problems with being able to get out for a variety of reasons. Either due to tiredness or lack of access for our needs. There are many reasons.

I hope the world can be more accommodating for the disabled community as we have so much to offer. We just need support.

Anyway that’s my post for today. I shall try be back again soon with more posts. Have a great day. 

New Long Cane

Hello all,

Last week there was no blog as I had caught Covid.

What I was going to write about, which will be topic of this weeks post is the first week with my new long cane from RNIB. No Jab Long Cane.

My new long cane held in my left hand, it has a red handle.

The cane is a little longer than normal but it is still safe to use. It is a graphite cane with red sheep skin handle, I know right…fancy. With it being graphite it is lighter than my aluminium one.

The opening line for the description by the RNIB is ‘This revolutionary shock-absorbing long cane is designed to eliminate the sharp jabs that can occur when cane tips get stuck, for example, in a drain, while you’re out and about.’

The shock absorbing element of the cain is the reason I bought it. Due to my curved spine I find that my pain levels are increased whenever the cane whacks against something.

DareDevil.

As soon as I opened it and saw it, I just thought DareDevil. I mean who wouldn’t? I messaged my friend straight away and sent her a picture. It’s so good.

But does it really work? 

Yes, yes it does. The Caine absorbs 80% of the shock created when you walk into something. It’s especially helpful when you are walking along uneven pavements and the cane catches causing me to have a lot of pain.

I had to swap the tip though as it came with a marshmallow tip, I prefer rollerball. The reason being is I feel it glides a lot more smoothly along the floor and works better with my back.

The cane cost £56.99 ex VAT. It was a worthwhile purchase and I would urge anyone who can to try it out if they suffer with any form of neck or back pain.

Let us know how you get with it.

Until next time, Philippa B.