Scoliosis and the cold

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. 

Scoliosis Awareness Month 2024

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. 

Disabled People have feelings too

Hello all,

As you may have seen this week in the news there has been a lot of negativity around Disabled People, more so than normal.

From articles about the government wanting to get people off of sickness payments and back into work, to articles about the government cutting funding for Disabled Children in schools.

As a disabled person all this negativity in the news is very difficult to see. It makes me feel like people think of Disabled people as a drain on society, that we don’t have value and that the government is pushing even more so to make life more difficult than it already is.

We have value, we deserve support and we do not deserve all this vile hatred being directed at us. This government, for far too long, has demonised Disabled People and acted as though we are sponges, that we leach off of society.

We do no such thing. We want to live a life like everyone else. Just because we are Disabled does not make us any less than those around us.

We have feelings, we have dreams, we have wants and needs. To see the news attacking Disabled People is appalling.

We are being attacked because we are seen as an easy target, people think we get all this money thrown at us because we’re Disabled. This is far form the truth.

Have you ever looked to see how much a wheelchair costs? Do you know the cost of having to pay for a taxi everyday because you are exhausted and in pain from being at work all day? Yes, you read that correctly- work. Get another job I here you cry? I like my job and I am good at it. How much do you think it cost to invest in making adaptations to your own home to make it accessible, because surprise surprise our homes are not built with accessibility in mind?

The world is not built for us, as I write this I am on my day off and my whole right side hurts. This is because I have Scoliois. So no matter what job I have I will always be in pain. I have a great physio who helps me to manage my pain. This Physio is not an NHS one. The NHS does not offer sport massages as a way to manage pain. I pay to see my physio through my benefits. He helps reduce the pain I am in on a daily basis. This is on top of me doing my physio exercises.

Some Disabled People can’t work and that’s none of your business. We shouldn’t have to justify ourselves to you. For those of us who do work, that does not mean we are frauds. We all have our challenges, but that does not make us any less than a non Disabled Person. We are people too.

Thank you,
Philippa B. 

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.

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. 

Scoliosis Awareness Month Ouch

Hello all,

Hope you are all well.

June is Scoliosis Awareness month and it true fashion my back has been hurting a lot more recently.

One of the things I need to do is get some more sport massages booked in. They are very beneficial to my back and mental health. The massages really release a lot of built up tension which causes me to be in pain.

The past few weeks I have been trying to do a few more different exercises on top of the normal stretches I have been given by my physio. The one which I am working on is arm and leg raises. It is quite difficult because I also have Dyspraxia so my balance is not the best. Doing these exercises helps with my back pain and helps my balance. So that’s two problems being addressed in one.

Doing the exercises in the long term will help to improve my core strength which will allow me to cary myself better. This will then mean I am using all my muscles, so that I am not over reliant on just the one side of my body.

In the short term it is causing me more me pain as I get used to my back having to work muscles it doesn’t normally, due to my scoliosis.

In the long term it will be better because the muscles are being used more and more. Helping me to stand up straighter, build strength in my shoulders and hips. I know it will be beneficial, it just really hurts.

The exercises along with the sport massages will help me to feel more comfortable, more relaxed and less tense. Reducing my pain and also improving my mental health.

Do you have Scoliosis or suspect someone may have it? Don’t be afraid to ask questions. Go to your doctors and ask that they check to see if the person has it. The person will be asked to stand up as straight as they can, then asked to lean forwards. This will allow the Doctor to see if the spine has a curve or if the shoulders are not straight.

If you want to seek any advice then check out Scoliosis Association UK.

I am on Twitter @pbarraclough

Scoliosis

Featured

Hello all,

I have decided this weeks post will be all about Scoliosis. Recently I have adjusted the exercises I do so I can try get a better balance, strengthen my core and shoulders. How exciting.

Doing physio exercises is very tiring. Normally when you go to a physio via the NHS you get exercises to do and they will, if necessary do a sport massage to release some of the tension. This is not normally the case though.

I do my exercises and then I have sport massages separately. Yes they are costly however I think it is really worth it. The sport massage releases the tension and helps you to start again. Then you can do the exercises to rebuild your strength and reset your muscles.

All of this does not stop my need to take painkillers on a daily basis. Right now for example, I am sat in my comfy chair but I have had to take pain killers. I am also wearing layers to keep my back muscles warm.

Scoliosis is very hard to live with and there is no cure. Even if you have the surgery you still have scoliosis. You still have days when you are in pain.

If you have any questions around scoliosis please feel free to drop a comment a below. Also check out SAUK.org.uk

Thank you for reading.
Twitter @PhilippaB

Being Sociable when disabled

Status

Visually Impaired Pip's avatar

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.

Scoliosis Awareness Month

Hello all,

Sorry for the delay in posting something. I have had a very busy few weeks.

Seen as it is Scoliosis Awareness Month I thought I’d better talk about this. If you have checked out other pages on my blog or you are following me on Instagram/Twitter you will know I have a curved Spine, otherwise known as Scoliosis. 

I was diagnosed with Scoliosis when I was 13. At the time we were told it is pretty mild and I wouldn’t need to wear a brace. When I got to 16 we were told there was no need to have surgery to correct my spine so I went onto sixth form. The same thing happened when I was 18, I went onto university. We decided this as we were advised it wouldn’t get any worse. Obviously things can change and there are multiple factors involved.

Unfortunately as I got older the pain I was in got worse. Over the past few years I have been getting sport massages, alongside my physio. Thankfully the combination of Sport massages and physio, along with pain killers, has enabled me to reduce the amount of pain which I am in. Although it does not stop it all together. Everyday I am in some form of pain because of my back and it will be like this forever. 

I do low impact exercise, for example my cycling. 

If you suspect you or someone you know has a curve in their spine I would urge you to go to the doctors to get it checked out. If they are able to spot it early then you can have treatment to help. It’s also really important to work on your posture. For example, when I’m at work I try not to lean against the tables. It might feel comfortable in the short term. In the long term it is not. Right now while I am writing this I am having to remember to sit as straight as possible. As I try to do this it feels uncomfortable. It is the right thing to do for my posture. 

Back pain is more common than people realise. Be kind to yourself and take regular breaks to sit down, or have a walk around. Remember that it is not easy living with back pain and everyone is different. There are no quick fixes. The amount of pain someone is in takes its toll on your physical and mental health. So be kind and don’t tell someone with back pain ‘oh you should just….’ because they’ve probably already heard it. 

It has been months since I last went for a sports massage. I have messaged my physio and asked if they can fit me in. I have an appointment. The pain in my back is more prominent lately, I can feel it all down the right hand side. It is also in my neck. As well as the pain I also loose strength in my right shoulder. So opening doors is very tricky. I basically have to put my whole weight against the door to open it.

Really looking forward to my sorts massage. It will be a long time coming. The image below is one I drew a while ago, but did not wish to share. However, I now feel I want to. It was drawn on Procreate.

A hand drawn picture of a back to show a person with a curved Spine.

Thank you. 

While you’re here please check out my post on my fundraising, I am trying to raise £3k for The British Heart Foundation and The Children’s Heart Surgery Fund. 

On Twitter: @PhilippapB

On Instagram: @VisuallyImpairedPip