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

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 

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:

• Before birth (congenital)
• In young children (early onset),
• In older children and teenagers (adolescent idiopathic)
• As adults (degenerative or de novo).’ 

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 

As we all know the Coronavirus has taken its toll on our lives over the past few months, I’m not just talking about the lockdown in the UK or Europe. I mean everywhere. We are being made to re consider what is important to us. How do we live, work and socialise.

A while ago I wrote a post about what I hope we all take from this situation. Maybe we should start to slow down and take a look at where we are and what we have now. We’re always wanting more, quicker and faster…that’s how we are expected to live.

Even during the lock down we are expected to learn a new skill, read more, do yoga etc. But then when we talk to one another we realise that no one really expects us to do this if we don’t want too. Our friends and family, the people who matter expect us to do what we can.
I have found a lot of these attitudes of ‘learn a new language, do some yoga, start a project’ are coming from online. While these people suggesting these things may mean well, they are also having a negative affect on our sense of self worth when we assume we have to do what they are saying.

I have a friend doing Couch to 5k and I’m proud of her for doing this, she’s quite an active person anyway and I can’t wait to see her and have a hug. I have another friend who is working from home and taking part in her Church group virtually. Again I can’t wait to see her and give her a hug.

My point here is that these people and many more of my friends are doing what they would normally, just in a different way. Maybe this is how we need to reflect on these suggestions coming from online. Perhaps don’t look at it as a ‘you must learn a new language’ but rather, what do you enjoy doing and how can you continue to do it in a new way?

I am trying to think of it like this. I am finding it helps. Otherwise I will think ‘well I have wasted these weeks’. Which I haven’t.
I have purchased a domain name for my blog.
I have used my new iPad to do drawing, which has been very beneficial to making myself feel calm and happy.
I have tried to continue with my blogging.
I have looked at ways to fundraise for the BHF.
Cleaning the house and de-cluttering.
Reading more.

These might not be big things to you. But they are to me. That’s what matters. Not the world telling me I should be doing this or I should be doing that. I am doing what makes me happy and that is what matters right now.

Last week I wrote a post about being kind to yourself. This is exactly what I’m on about. Think about the things that are being put out on the internet as suggestions, don’t think that you have to be doing the same as everyone else. We’re not the same.

As a Disabled person how am I expected to keep to a new full on time table of activities. I can’t. So I’m doing what I can. Yes I am getting tired writing this. But I am also enjoying it because it’s a way of reminding myself to take my own advice. We often fail at that. We can help our friends out but we then fail to recognise our own asking for help.

The world has changed, there will be a new normal, we will have to adapt. One of those ways of adapting is by slowing down. Slowing down and remembering what we do have, not about what’s next. We need to do this together. Otherwise we will continue with the world the way that it is. Which will cause more harm than good.

We need to slow down and stop rushing along with our day. Why? What is a the end of it? Make time in your day to enjoy things. Make time in your day do appreciate what you’ve enjoyed.

If we can do this then we can all keep up with another a bit easier. We can help each other out. We can make our world a happier place to be. To be. Being. Just be.

Be kind, do what you enjoy- within reason, stay safe.

Twitter: @PhilippaB
Instagram: @VisuallyImpairedPip

Hello,

I have been gone for a while but now I am back. At the beginning of this lockdown period I was trying to get back into blogging, but then found I was getting fed up with social media. So I took a break. After a while I have come back onto Twitter and Instagram. But I will admit taking some time away was very much appreciated.

During the time away I have been doing some online courses on Udemy which have been great. I have also been raising money for the British Heart Foundation on JustGiving. The other thing I have done is upgraded my WordPress account. So now I have my own domain, rather than a .wordpreess one.

The course on Udemy has given me more insight into how to get the most out of WordPress. If you’re interested then course name is 2019 Blog Blueprint: How To Turn Blogging Into A Career by Daniel Boehm. While I have been blogging for a number of years I recently moved to WordPress. I just wanted to feel a bit more confident with WordPress and found this course to be the right one for myself. I am picking up some useful tips along the way.

Over the past week I have been drawing a lot and I have been really enjoying it. With the pictures I have been drawing I am hoping to raise money for The British Heart Foundation.

I was born with Congenital Heart Disease and had Open heart Surgery at a week old. The problem is I have so many problems I want to donate to all the charities which are linked to the problems I have. Then you have all the other causes you’re passionate about. But I suppose if you do one nice thing, it’s better than nothing.

As I mentioned I have purchased a domain name. My friend suggested sticking with WordPress a they can do everything for you. So this is what I did. My brother cam up with the name and I found it funny.

Since this lockdown began and I have been at home I have tried to learn new skills. I might as well because otherwise I’ll get bored. This is not to say I haven’t had days where I have sat and done nothing. It is important in these difficult times to be kind to yourself and not let yourself feel pressured. When this lockdown started there was a lot of talk around having to learn a new skill otherwise you’re wasting your time, you’re not being productive, you’re being lazy….

Well you’re not. If you’re doing what feels right for you, then that’s what matters. Lockdown is stressful. You need to be kind to yourself. If you feel like laying on the couch and watching a film, do that, if you want to do a jigsaw do that, if you fancy doing an aerobics class with friends by zoom….do it. Do what makes you happy. You need to do what you need to do. Do not feel pressured to have to learn a new language, read a book a week, go for a run…do what is right for you.

Think about what makes you happy and do it. These are uncertain times for everyone. We can’t all be expected to just get on with it. We might have once thought ‘how great would it be to just sit at home?’ Now we know. We can learn to appreciate what makes us happy more. I know one thing which makes me happy, a nice bubblebath. So I treated myself to some nice face scrub stuff. It might not seem like much, but I really enjoy that me time.

We need to accept what is happening, reach out to one another more and appreciate if someone doesn’t want to chat, that’s OK too.

I’m going now, but please do remember to be kind to yourself, don’t feel pressured to learn something new. But you could set yourself one challenge. It is important to feel a sense of achievement. I think that’s why I have started the drawing.

Be back soon,
@PhilippaB
@VisuallyImpairedPip

Hello again,

In my last blog post I wrote about what I hope will come from this Corona Virus. I hoped that it would enable us to slow down a little. The blog is here, if you chose to read it.

Another thing which I have thought about in this past week is the human impact on our planet. We as humans have a massive impact on our planet, good and bad. However these recent events have really shown us just how much of a negative impact we have on our planet. We see our air being polluted, our oceans filling up with plastic, yet we do very little to try combat the issue.

We organise marches and campaigns to block our capital cities from running, but how are those people choosing to get there? We say no to plastic straws which are getting stuck in a little turtles nose. But we don’t consider this blanket ban and the effect it has on certain disabled people? We buy tote bags and still go to the supermarket for a few bits and don’t take them with us….why?

Yet after the lock down in China the air pollution dramatically decreased. The lock down in Venice allowed people to see the fish return to view in the rivers…. As the UK goes into a ‘only go out for the essentials’ phase, I dread to think what the images are like over our air space from NASA.

I hope that from these events we can also learn to reduce our reliance on cars and stay at home a little more, maybe walk to the shop if you can. I would hope our government can look at the impact we are having and invest in our public transport to enable those of us who already use it to feel more comfortable on our journeys. So that we stop using social media to complain about our commutes and then maybe people will be more inclined to want to use public transport. We need investment and we need it now.

I realise these past two posts have not been around disabilities and raising awareness. However, this past few months have showed us how important it really is to come together as one planet. To work together to find a solution. From the people working in hospitals and emergency services to you on your street checking in with a neighbour to make sure they are OK. We have all done our bit to help one another. It has truly shown, how when we work together we can achieve so much. We need to let this continue.

We cannot go back to being selfish and me me me. We need to help that elderly person who is stuck in on their own and needs you to get them some bits from the shop. We need to stop barging past one another and being rush rush rush. People have to think abut the choices they are making and their impact on the planet. A while ago I wrote about what changes I have made. Here’s a link.

I suppose this blog is about being mindful. Mindful of our own choices, mindful of our nations choices, mindful of our Planets choices. We share this Earth and we need that to continue.

Enjoy your day.

Twitter: @PhilippaB

Instagram: @VisuallyImpairedPip

Hello,

As I’m sure you’re all aware, Coronavirus has been the big thing in recent months. However, it’s really been a massive thing in the UK over recent weeks.

A lot people on my social media have been posting about Animal Crossing and how it was keeping them busy. Others have been building lego, or drawing… I don’t really have many hobbies….so I’ve been writing or listening to audio books. It’s scary how very little hobbies I have. I think that’s down to the fact I’m normally very tired after work and then on my days off I just want to sleep or sit. It’s exhausting.

So I’m going to use my time to write a bit more. I have a few things written down which have been sitting there for months. So nows the time.

Our world is just so rush rush rush… now now now… I am hoping that one of the things which comes from this is people learning to relax more. To be able to just slow things down… you don’t have to be in a rush every minute of the day.

Consider taking time to have a cup of tea and nothing else. Just enjoy that cup of tea. Believe it or not you can enjoy sitting and drinking a cup of tea and not doing anything else.

I think we are so used to having to do things every minute of the day, we make one another feel guilty for not doing things. ‘Why aren’t you going to the pub?’, ‘Why aren’t you going to the gym?’, ‘You haven’t read that book yet?’… We all have our own ways of spending our time. We all have the little things we enjoy. We shouldn’t make one another feel guilty for not doing the same as ourselves.

If you decide to go for walk every Saturday, that’s great, that’s your choice. But if you decide to go the gym everyday, again, that’s great, your choice. If you read three books a month, wonderful. However, If other people chose to go to a pottery class and go tot he gym once a week, because that’s how much they can do, then that what they do. Lets not make one another feel bad for not doing the same as someone else. The problem is we often don’t realise we are doing this. As we are so used to doing it. Now we have had to stop, slow down and we are being forced to really think about what we used to do.

Let us use this time to reset. Think about the things which really matter. Realise that we might be better off doing one thing less a week, maybe we can take more time to sit down with a book, go for a solitary walk, maybe like me, go out with friends a bit more often. I’m not the most social person, sometimes by choice, other times, well it’s difficult getting out when you can’t see too well. I rely on others.

Above all realise what you need. Don’t let others expectations over take your own. Be kind to yourself. You matter.

I’ll leave it there for now.

Twitter: @PhilippaB
Instagram: @VisuallyImpairedPip

Hello,

Today I was feeling a bit crap, so had a shower rather than a bath. Still feel crap, not done much. I’m only writing this because I have nothing else to do so might as well write this. Will anyone read it? Doubt it.

Anyway that’s that. Only had a pot noodle today, not hungry, can’t be bothered.

Done all the jobs in the house, the washing is more or less done, the vacuuming is done, the dusting is done….

Started watching Disney Plus yesterday, it’s really good. I did the one year subscription. Glad I have it.

Anyway, as I say no one will be reading this so I’m going to go watch the Simpsons.

Hello,

It’s only been a few days since my last post however I have a lot more free time on my hands. The first two days of no work I was very productive: I put a wash on, cleaned my bathroom, went through my clothes and did some decluttering.

The past two days I have mooched around and not done much, however yesterday I went outside and cleared a small area of the garden and we threw some wild flower seeds down. See what happens. I have also gone round and wiped the door handles and the banister. Try keep it clean as best I can.

Currently I am backing up my MacBook as it decided to switch off at 30% battery. The mac is 7 or so years old, with good use. I can’t complain.

Yesterday I watched Harry Potter, but today I’m just going to write this and then lay down. My good friend Nystagmus has decided to play up again. So I can’t watch TV or go on my phone too much. I will have to be quick writing this.

It is interesting getting used to this slowed down way of life. I’ll admit I like not having to get the train with people who pay no attention to my guidecane. However, I think I am tired because I’m used to being at work. So I’m trying to keep myself busy. As I say, I’ll have to just listen to audiobooks or the radio today as my eyes are wobbly. It makes me feel sick.

Anyway, I’m off now.