Nystagmus Awareness Day

Hello again,

I am currently on my week off. Got a hair cut booked in, a trip to Whitby and seeing a friend next weekend. So I figured I would write my blog earlier than planned and then I’m not in a rush.

The 20th of June is Nystagmus awareness day. Nystagmus is an involuntary eye movement where your eyes move from side to side, or maybe up and down, or even in circles. About 1 in a 1000 people have this condition so it is more common than you might think. You might not think it sounds too bad, but what if I described it to you like this; it feels like you’re on a roundabout and you’ve just stepped off, you feel very wobbly and quite dizzy. Even when you close your eyes you still feel sick, even if you sit down it doesn’t stop. You feel like your eyes are knocking from side to side in your head and you can feel it. In order to try and reduce your wobbly eyes you tip your head to one side and try get your eyes to focus. But, they don’t. As well as having Nystagmus I also have a squint, so my right eye looks inwards.

The other big problem for me and I’m sure other people with Nystagmus will agree is motion. Remember I said I can’t watch TV when my eyes are more wobbly than normal? I often can’t watch things that are zooming around too quickly, another reason why I don’t like flying bugs. They’re too small and I can’t track them easily enough. Imagine trying to trap a spider under a glass when you can’t even focus on the darn thing when it’s stood still going ‘come on!’

Due to placing my head on one side I then get neck pain quite frequently. I often get told to put my head up straight. Well, how am I supposed to do that if all the world is moving when I do?

I don’t know about the rest of the Nystagmus community but when I’m in pain my eyes tend to wobble a lot more than normal. This makes certain times of the month quite stressful as I can really only lay in bed and listen to the radio as sitting up is too painful and makes me feel even more dizzy.

The Nystagmus community on Twitter is wonderful. There is a wonderful # called #WobblyWednesdays. You’ll find a lot of us on there. If you have a wobble and are feeling a bit down about it I would reach out to the community. We are in this together and while we might not always see clearly we can still help one another out. Emotional support can be a big thing. Learning coping mechanisms and sharing your ups and downs can be a great way of dealing with the stress of Nystagmus.

If you’re still not sure about sharing your story on Twitter then don’t worry, you can always check out The Nystagmus Network, or the RNIB. They are fabulous charities and can offer you support. We need to make sure we all know there is help out there.

The purpose of my blogs, if this is the first one you have found is this; disability is not a dirty word. Disabled people shouldn’t feel undervalued or less than those without disabilities. Disabled people are people.

Thank you for reading, if you would like to get in touch you can email me randomlyanxious@gmail.com, or follow me on Twitter @PhilippaB. Or follow my photos on Instagram @VisuallyImpairedPip


Please Don’t Grab Me

Hello again,

This week on Twitter there has been a lot of talk around disabled people being grabbed, pushed and pulled when out and about. About Guide Dogs being hit on the head, or had their paws trampled. Another story which keeps coming up is wheelchair users who are having people push their chairs for them without asking. How is this OK? It is not is the short answer.

I am a visually impaired person who has used a guide cane for a little over a year. Using a guide cane is one of the best decisions I have ever made. I can use it to feel my way around. I used to use a symbol cane but after an experience on a bus it was time to use something bit more obvious.

Something which happened to me this week on my way to work was not unheard of, or something I haven’t experienced before. I was getting off the train and a person walked up at the side of me and asked me how much I can see, what’s my vision like? I was a bit annoyed as I was quite tired and just wanted to get to work. I explained I can see out some what out of my left eye and left it at that. They asked if I was OK and I said ‘yes thank you’. I was hoping just being polite and giving short answers would be enough to give them a hint. It was not.

We approached the escalator, by this point they had already asked me ‘do you need a hand?’ to which I replied ‘I’m OK thank you’. I went to grab the hand rail and saw them make a dramatic stop there sign to the other commuters by sticking out their arm to stop them. Then as we got on the escalator they grabbed my arm. Instead of telling them to let go I tucked my arm in so they couldn’t grab my arm more. As I got on they said ‘thats it, you’re doing well’. I was not happy. I chose to ignore this condescending comment and focus on breathing to try and stay calm. I was using all my energy to focus on getting out the train station quickly. We approached the top of the escalators and I got off, walked to the end and got on the other escalators. They then made a comment about my abilities to negotiate escalators to a fellow commuter. Again, condescending and ableist.

We approached the barriers and I walked through. Once through I made sure to say thank you and goodbye. They left me after I said I was OK getting out and to my destination. I walked quickly to work and was happy when I got there. Knowing I was surrounded by people who are supportive and in no way condescending.

I was not happy as you can tell. If you are reading this and thinking they was only trying to be nice. I agree, they were trying to help and for that I am thankful. However, you do not start a conversation with a disabled person by asking them about their disability. It’s rude. It’s not good etiquette and its quite ableist. I said I was OK to the person and they continued to follow me. They touched me. That is not OK.

They were right to ask if I needed help. I am thankful when people ask me if I need help. Sometimes I do. I am grateful that there are nice people out there who will help me. What I am not thankful for are people who are there to grab and condescend me. I am a woman who was trying to get to work. I am not a child, or an object.

If you see a disabled person and you would like to help, just ask and if they say they’re ok, move on. They know what’s best for them.

I hope this person doesn’t stop asking people if they need help, but I hope they reconsider how they go about helping. Even as I write this I can hear and see all the ‘well, disabled people should be grateful’, ‘disabled people don’t know what help they need’ ‘they should just accept it’. No we shouldn’t. I realise some people might say it would have been better to explain to them that I was OK and that my guide cane helps me to feel my way around and please don’t touch me. I feel that I shouldn’t have to explain myself.

I would urge you ask people if they need help, because sometimes, there’s too much going on for me to be able to stop and think ‘I need help’. I like that people want to help because it makes my day easier.
You can help by offering your seat on public transport. Don’t just sit and wait for us to ask.
You can help by not jumping over out mobility aids.
You can help by not grabbing our wheelchairs.
You can help by not zig zagging in front of us and saying ‘just wanted to check your vision’.
You can help by not filming us as we park our cars (not me I’m not allowed a license, because you know, visually impaired) and put our blue badges in the window and give you a thumbs up.
You can help by not petting our guide dogs.
You can help by not hitting our guide dogs after we have said no to your request to pet our guide dog.

There are many other things. I am sorry this blog post is quite negative, but its stressful being disabled and being treated like we should be grateful to even exist. Yes, that is how the world makes us feel.

Please remember we are people too and all we want is respect. Please offer us help and we will say ‘yes please’ or ‘no thank you’.

Thank you for reading and I hope you enjoyed my post. To all of you there on Twitter who I follow and sadly who’s stories I am referring to here, remember you are all wonderful and following you helps me find answers and support.

Until next time.


Scoliosis Awareness Month


June is Scoliosis Awareness Month!!! It’s a time when those of us with curved spines can dedicate our month to raising awareness. Scoliosis has no known cause, and no cure. Which is quite difficult to deal with, especially if you’re hearing for the first time that you have Scoliosis.

When I was 13 we went to the doctors because we realised my spine had a slight curve in it. They sent me for some X-rays and we got the results. Saying it was a slight curvature of the spine and that I have a condition known as Scoliosis. We talked through what that means and how it could affect me. We spoke about how I could prevent the curve getting worse by wearing a brace, but the doctors didn’t think it was required at the time. So we carried on. A few years later when I was 15 a family member noticed the curve in my back when we were on holiday. We went to the doctors again and we were told, yes you have Scoliosis and they think that because I would stop growing soon there would be no need to wear a brace or have surgery.

This is a good thing as I was born with a heart condition and any form of surgery, especially on your spine is risky, but because of my heart condition it makes it much more risky.

Again we carried on, but this time we went for some physio as I needed to work on my posture. I finished Sixth Form and went off to University. Once I graduated I went off and found a job.

My job involves me being on my feet most of the day. You’re probably thinking ‘why are you doing this if you’ve have a curved spine?’ After university I applied for hundreds of jobs, and was told ‘no’ by all of them. When you apply and get rejected, even when you haven’t disclosed your disability it gets a little disheartening. When I applied for the job I currently have I didn’t expect to get it. I mentioned in the interview that I was visually impaired and had learning difficulties, I thought ‘what do I have to lose?’ I had been out of uni for six months and been doing volunteering and things to try get experience. But no luck. Finally I got the call offering me the job.

I was so happy it was wonderful. But then I felt worried and anxious I wouldn’t be able to do it and I’d be back at the job centre again applying for more jobs. But six and a half years later I am enjoying my job and the support that comes with it. Yey me!

Back to my Scoliosis- see what I did there…anyway. Last year before Christmas I went to the doctors with back pain. The doctor took a look at my back and said he could see the scoliosis through my t-shirt and that he was surprised I had been left with no follow up appointments. He said it was no longer mild and that it was severe. But having surgery would be the last resort in his opinion given my medical history.

While I am angry that my back pain was left unchecked with no follow up appointments by the NHS, there is nothing I can do about it. I have so many health problems it is hard to keep track of them all. All my other problems have follow up appointments. I don’t understand why the hospital left us to it. Yes your health is your responsibility, but when you have so many other health problems and you’re going through so many life changes within school, it is not OK. However I cannot just sit and be angry about it because that will not help.

I had three weeks off at the beginning of the following year, because of the cold weather affecting my back so much. I went to the doctors again and was still waiting on phsysio I had requested a few months earlier. I got my sick note and kept sending it to work. Feeling guilty for taking so much time off. However my work is wonderful, they just kept telling me to check in and let them know what was happening and to get rested. I managed to get some physio by going private. I had some sport massages and we went over some more exercises. The person we saw was great, she understood the pain I was in and we talked about how physio and sport massages would be a great way to address the pain I was in. After a few weeks I was a lot better and I kept going back for physio after I returned to work. By this point my physio with the NHS was also available. The person we saw was lovely, she agreed that physio and sport massages would be a great way to deal with my back pain and we also discussed hydrotherapy. Again the person we saw agreed surgery should be the last resort and this helps because it reassures me that I can manage my pain through exercise, physio and pain killers. As well as staying warm by wearing layers and using hot water-bottles.

My friend mentioned she knew someone who had Scoliosis and who had the surgery done and would I like to meet her. I said I would and a few weeks later we met up for a coffee and we had a chat about the surgery and our different paths to diagnosis. She was lovely and put my mind at ease. I have decided surgery is not for me, although I am in a lot of pain. I know that it is not the right option at this time. Had I have known it would get worse as I got older, I am now 27, I might have had the surgery before or after going to university.

Surgery is not for everyone and the NHS recognises this. They understand the complexity of the surgery and ensure you know what the journey will look like should you have it done.

I was advised against it, but they talked me though what would happen anyway. This was helpful as it made me understand how difficult it would be. The surgery involves having a metal rod inserted into the part of your back which has the most severe curve. For me this is the top. Once you have had the surgery they get you up and about the next day. The reason for this is you need to keep moving so you don’t stiffen up. The physios and other members of staff who help you understand the amount of pain you’re in and encourage you to keep going. You’re given pain killers to help ease the pain and to enable you to keep doing the physio. They get you and your family ready for when you go home and help them to understand how best to support you.

If you’re suffering with Scoliosis don’t be afraid to reach out to SAUK. Also use Twitter to find support. If you have questions then don’t be afraid to ask.

Living with a curved spine is hard, I’m in pain right now. My whole right side is aching. You should know that there is support out there. My diagnosis came at a difficult time, SATS year and then GCSE, followed by uni. If you’re a parent please check your child’s posture regularly and if you noticed their spine is not straight, go to the doctors and have it followed up on. You can prevent it getting worse. You can manage Scoliosis.

Thank you again for reading my blog, if you would like to get in touch please email me at randomlyanxious@gmail.com or you can find me on Twitter, or Insta

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