British Heart Foundation Virtual Tin

Hello,

Over the past 3 months since the start of the lockdown in the UK I have been seeing what I can do to help out a charity which is very important to myself, The British Heart Foundation.

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Dr Marten boots: coloured in different shades of red, the Dr Marten label on the back of the shoe is still yellow.

I was born with Congenital Heart Disease and I wanted to try do something to raise money for the charity. After having a think I decided I would draw things which were red or had red items in them. The first picture I drew was of my Doc Martens, but I did them in Red. I then decided I would draw a Converse shoe.

Over the weeks I changed from drawing items to drawing pictures of places. These places were mostly beaches in Saint Ives. If you’ve ever looked at my instagram you will see that I love Cornwall and Saint Ives very much. Drawing the images of Saint Ives beaches was fun, it was nice to be able to play around with Procreate and try out the various brushes and pencils which they have on offer. I then decided to try a different app called Sketchbook. Again this app comes with a variety of brushes and pencils.

 A white seagull has taken flight from its perch on top of a life ring. In the background are rocks, and the ocean. On top of the hill is a lookout station for boats.

A seagull by the coast

A red heart with stitching up the middle holding it together. There is a needle and thread sat underneath.

A heart stitched back together.

These drawings were posted on my instagram and Twitter over the past few weeks. So far I have managed to raise £105. I am very thankful to those who have donated and helped me to raise this money. In addition to my pictures, myself and my friend Beth have been working on something we hope to share with you soon. Until then I just wanted to let you know about the pictures I have done so far and that we do have another thing coming which we hope you will find interesting.

If you would like to donate then please follow this link. 

To give you an idea of where your money goes please follow this link to the BHF annual report 2019. 

Heart Disease is the biggest killer globally. The British Heart Foundation is working to Beat Heartbreak Forever and one day, with your help they can make this a reality. 

Thank you for Reading my post, I know it’s a little different than normal. But the BHF is very important to me and I wanted to let you know this thing me and Beth have been talking about is coming,

I’m on Twitter: @PhilippaB

Instagram: @VisuallyImapiredPip

Leeds Train Station

Hello again, 

So today I thought I would write about my experience of going back to work. I am anxious and quite scared about public transport and I work in quite
a busy environment. In order  to get to work I need to get a bus and then a train. It can take me an 1 hour an 45 minutes to get to work. 

Work closer to home I hear some of you saying? Thats neither here nor there right now. 

I have been working to build more independence around travel as well as other areas and today with the help of the same person,  who works with visually impaired and blind people we decided to test out the route I would normally do on my way to and from work. 

My mum dropped me off in town so I did not need to worry about the bus and then we met up by the interchange. It was about 9:30 and we had arranged to meet at that time. We had just missed the train. So we went and asked them about help with getting on and off the train. Normally I just get on with the pushing and shoving because I want to be as independent as possible, and yes I realise I need to change this attitude. 

We went into the information centre upstairs and when you go in through the doors you are greeted by a mess of stanchions which did not help. I asked if I could follow the person I was with as he was wearing a bright blue coat so I just focussed on him. We went and asked the man in the ticket office who was very helpful. When we asked about getting on the train with assistance they were more than happy to get me on the train should I ask for help. One tick in the box for ensuring I can get on the train, I just need to do in practice now. But I feel reassured. 

We decided to walk to Forster Square because the next train from Bradford Interchange was in an hour and that was not going to work. We walked across town, not too far, and I was thankful I’d taken painkillers before I left home. When we arrived we went to buy tickets and I forgot what kind of ticket we wanted. When there’s a lot going on I become very overwhelmed. I was thankful it wasn’t busy so I did not need to rush. 

After we purchased our tickets we went through the barrier and we were told it was the train on the left. Getting on the train was difficult as I have not been on a train in 3 months. The person I was with is called Simon, and he advised me that the carriage to the right was cordoned off and I could not sit there. He also explained that as this is the first carriage, that I was not able to sit in the end part where the door to the drivers compartment is. So we turned left. The seating on the train is all blue, with yellow and blue signs put over the top of the seats saying they are

my guide cane is in the foreground, there are two blue seats the background facing me, with two 'Out Of Use' signs pace on the tops of the seat.

Where to sit?

 out of use. This included the disabled seats which you normally come to first. I can’t explain the layout fully as I was trying to deal with a lot of visual information at once. 

If there are seats of two on either side, only one person can sit in that set of two. There is then another row in front

 

 which is completely out of use. The next row of seats are for a group of four people, where again only one person may sit. Simon asked where I wanted to sit and

 

described to me where that seat was. I went and sat down and he then sat on the opposite side of the train.

Once we had pulled into Leeds we go off the train and I thanked another passenger who asked if I needed help. This was great because its nice to know people are still willing to assist. We got off and Simon explained the things to be weary of that had changed, for example: there is now a yellow strip of tape along the floor which advises you to not go beyond that line until the train arrives. As we walked forward a man in a high vis jacket approached us and asked us to keep to the left, and would we need any assistance. He offered to show us the new layout of the station. 

We said yes. At this point for any of you familiar with Leeds station we pulled in on platform 8. We were advised to keep to the left at all times, so that meant walking under the escalators, where the lifts are located behind you under the concourse. He then pointed out that there was a big silver barrier running from the ticket gates across to the escalators going up.  The escalator going up is currently out of use. You then walk through the barriers and there is no more one way system. Just blue stickers on the floor in rows. 

If you’re looking back at the entrance to the ticket barriers you will see red for no entry and green for entry. Entry to the platforms is on the left and entry out from the platforms is on the right.  

If you are going back to the ticket barriers in the middle they have a silver barricade to keep people from going the wrong way. They also have some staff stood behind screens to help you get through the barriers should you need it. 

(I did not notice this on the end barriers where the disabled barriers are- give me a moment I will move onto this.)

Once you have moved through the barriers as though you are going to get the train, turn left and move past the information point (which is currently closed- don’t worry I’ll move onto this) and turn left again as though your going down the platform towards platform number nine. There are steps at the end to the bridge which runs right across to platform 16. These steps are then all one way which is perfect because no one is rushing down at you. Once you’re down the steps you then walk back along to where you need to be. It does add time to your journey, however because it is all one way you don’t need to worry about people walking towards you and not moving out your way. 

Now, back to the information point and the disabled access barriers being closed. I asked where I could go to get help should I need it. I suggested the information point in the middle of the new atrium. However this is also closed. I was advised to look for Northern staff in blue, or people wearing yellow high vis jackets, I could also ask LNER in red, they could always get me the help I need as they’ve been great in the past. The staff are dotted around, I noticed they were by the entrances into and out of the station on the left and right. They were also stood in a group up by the barriers where the barricade is positioned in the middle. So I can just look for a cluster of yellow. When you pass through the barriers there are more yellow high vis jackets as well. They are stood right in the middle. 

I feel a little easier knowing I’ve gone back into Leeds on the train for the first time in three months. But I did have Simon with me, who was a massive help. I know going in on my own will be quite different. But I will try it and see what happens. 

I’m feeling quite drained now and I have my bath running so I will go and check on that. 

If you have any questions around how you can make life easier for disabled people like myself in these extraordinary times then please just ask. The important thing to remember is, we don’t expect you to have all the answers, because we don’t either. We just don’t want to be an after thought. We need to be included in the process from the beginning to ensure our access needs are met. 

Thank you,

Philippa B 🙂 

Twitter:@PhilippaB

Instagram: @VisuallyImapiredPip 

Scoliosis Awareness Month

Hello again,

As June is Scoliosis Awareness Month I thought I would write another blog post about it. I am more than just my curve, but my curve gives me a lot of pain. Therefore I have to be aware of my posture all the time. 

The problem with this is I’m too busy being aware of my surroundings as a Visually Impaired Person. So my curve is another element I must try hard to be aware of. It takes a lot of energy to be aware of you posture. However, it also takes a lot of energy to not be aware of it. 

The more you let it slide the more painful it becomes because you have tensed up and you have allowed your muscles to set and become tense. You start to hunch over, you hold yourself in a position which might be natural to you. But over time becomes uncomfortable. 

One of the reasons I am glad the lockdown has eased, is that I can now go for a sport massage. Some of you might not think this is reasonable. But when you are in pain and you’re taking tablets on a daily basis, you really need to consider the option of a sport massage. I chose to go for one as I knew I would be expected to go back to work and needed to feel as comfortable as possible. Which on top of all the Coronavirus stuff I also had to feel comfortable with my back. 

I had not been for a sport massage since early February, it is now June. Although I have not been in work since March, it does not mean I have been without pain. 

When I went the guy who does my sport massage did wear PPE, so it was as safe as it could be. He obviously washed his hands as soon as he came in. There was also hand gel for us to use, which we did. When we finished we went straight home and washed our hands. 

My back feels a lot better. My muscles feel soft. Where as before they were hard and tense. We have another appointment booked for a months time. The pain is still there. But I am able to now sit up straighter and lean to both sides better than I could before. 

Due to Coronavirus a lot of operations and hospital appointments have been put on hold. This means those waiting for their Scoliosis operations have had to wait too. Surgery is usually a last resort for a lot of us. The pain gets to be too much. When you have the surgery you are in so much pain afterwards. You’ve had two metal rods, known as Harrington Rods placed down either side of your spine and screwed together with your spine in the middle. This is done in an attempt to stop your curve getting worse and to correct the curve. 

Personally I’ve never had it done. However if you go to SAUK you will find a lot of info around the surgery and what comes afterwards. It’s scary and there can be complications. But the level of support you receive is immense. I have spoken to physios who’ve worked with those who’ve had it done and they tell you how difficult it will be, they don’t sugar coat it. But they also tell you that they will be there to help you get through it. 

Thank you for reading my blog and don’t forget to check out my other posts on Scoliosis. 

Twitter: @PhilippaB

Instagram: @VisuallyImpairedPip

Scoliosis- What is it? How does it impact me?

Hello again, 

It has been a while. 

Today I thought I’d talk about Scoliosis. I have not ben able to go for my monthly sport massage since the end of February and I am defiantly feeling it. 

My spine is curved in a S shape, but in the wrong way. One side of my back is stuck out and one shoulder is higher than the other. Thankfully my back curves away from my heart, I was born with Congenital Heart Disease. 

From theScoliosis Awareness UK website, ‘Although many people have not heard of scoliosis it is not rare. 3 to 4 children per 1000 need specialist supervision.

Scoliosis can affect people at different points in their lives. It can happen:

As far as I am aware my Scoliosis started to show when I was a teenager, maybe a little younger. To give you an idea of how curved it is, well, my spine almost touches my right shoulder-blade. Right now, it hurts. 

When I was younger I was told I would probably not need the surgery. That bracing probably wouldn’t be needed. It was left up to us to decide. However, I have so many other health problems we found it very difficult to keep track of my spine and the curve. So a few years ago we went to the Doctors to see a muscular skeletal Doctor who informed us it was not a mild Scoliosis and that it was severe. I was angry and upset. I felt let down. Had I have been informed it would get worse I would have potentially considered the surgery. 

The problem is I suppose it’s difficult for Doctors to tell. It is not something I can get too hung up on. I was sent to Physiotherapy and that allowed me to learn to correct my posture. I have done this for many years. Now when I am at work I stand myself near a table as it allows me to put my hands on the table in front of me and adjust my balance so I can stand in a better position for my back. 

I was told by the muscular skeletal Doctor that doing physio and adjusting my posture would make a difference to my pain, it has. It was also suggested to have sport massages. This would relieve the pain and tension and allow my muscles to reset. I like to think of it as them unlearning, allowing me to start again. 

The mix of sport massages and physio exercises  have really helped. Each time I have gone back to have sport massage over the past few months, prior to my last appointment in February, my muscles have been a lot better. My back pain had reduced. My neck pain had reduced. I had  worked hard. 

Some of it is also to do with mindset and being aware of how I am feeling physically. So if I feel I am leaning to one side, I am able to correct this. If I feel my neck is aching, I think about my posture in that moment and really think about adjusting my stance to be better. Right now I am thinking about how I am sitting. Readjusting my back and trying to keep it as straight as possible. 

 

In no way am I saying it fixes the problem, what it does is allow me to tell myself; ‘OK this hurts, I should book another appointment’. As I went on like this I was able to tell myself every month I will have a sport massage to allow my muscles to reset and start again. 

This link shows you information on pain management. It goes into a few different options, one which I have discussed above, being massage. 

https://www.sauk.org.uk/coping-with-scoliosis/pain-management 

The Scoliosis Awareness UK website has a lot of information around ways to help your posture when standing, sitting or sleeping.        

  https://www.sauk.org.uk/coping-with-scoliosis/posture-and-positioning 

They have plenty of information for you to explore. If you are unsure you can contact the helpline: 020 8964 1166. I have used this to find out information about support available around thinking about surgery. Another valuable resource is their Twitter account, you could get in touch with other people living with Scoliosis. This is such a big help.  

In my experience of Scoliosis I would like people to maintain follow up appointments with their GP. Then you can’t try to understand your curve better, you can manage your pain better. 

Remember if the way you look makes someone else feel uncomfortable then they are not worth your time, if you have a scar, it is beautiful, you are you and you are amazing. 

I you would like to read my other blogs on Scoliosis Awareness Month they are here.

Thank you for reading,

Twitter: @PhilippaB

Instagram: @VisuallyImpairedPip