Optic neuritis and me
For many people with MS, optic neuritis (inflammation of the optic nerve) is often an early symptom of the disease. It is usually just in one eye and it either resolves fully over time or leaves some residual sight loss. Unfortunately, over the past 25 years I’ve had optic neuritis several times in each eye and this has now left me visually impaired.
Each time I’d get the familiar pain in my eye as I looked to one side, the vision would deteriorate and colours would fade. The first time it happened I thought it was a problem with my contact lenses, but the optician soon referred me for an urgent appointment at the hospital eye clinic and they diagnosed optic neuritis. The doctor explained that it sometimes happens as a standalone condition, but can often be a sign of MS. As I had been having other neurological symptoms at the time and was having tests it was another indication that it probably was MS.
It is difficult to describe my vision now. There is no definition to what I see. It's like I need to put glasses on even when I’m already wearing them.
Visual field tests show that actually there are large areas in my vision where I can’t see anything, but both eyes working together compensate for each other to some extent and are greater than the sum of their parts. I’ve visited all sorts of opticians and optometrists hoping there was a different type of lens or tint for my glasses that might help improve the vision, but unfortunately I’ve discovered that there is very little that helps sight loss caused by nerve damage.
I have difficulty seeing people’s faces unless I’m really close, so often use their mannerisms and voices to help or people just think I’m ignoring them! I love attending live football, but rely on my friends to describe what’s going on. I still enjoy being at the matches though. I can still enjoy the atmosphere and the social aspect.
How I've had to adapt my life
There is an added problem though and that is the aids that often help people with sight loss maintain their independence, like using a white cane for example, I can’t use because I need mobility aids to help me walk. Equally my increasingly limited mobility due to the physical symptoms of MS progression has the additional complication of sight loss. Therefore, it means the things that can help maintain independence with mobility problems, like a mobility scooter, I can’t easily use alone because of the visual impairment. Consequently, I am now increasingly reliant on the help of others and that is incredibly frustrating.
It is nearly exactly 5 years since I had to stop driving due to my eyesight. This was one of my biggest fears. Each year I would breathe a sigh of relief when I got through my eye test and they said that I still met the DVLA requirements to continue driving. It felt like such a big thing to give up my car, but safety is obviously paramount. Whilst it took some getting used to there are taxis and good friends and family who are only too happy to give me lifts. Also the advantage is I get to see them more often and after they’ve taken me to an appointment or to run an errand we usually go for coffee and cake so it’s not all bad! Except maybe for my waistline!
I’m pretty pragmatic though and usually most things are still achievable, but just need to be approached differently.
Tools that have helped me
Good lighting makes a massive difference. I have had all the bulbs in my main lights changed to daylight bulbs. I also have a task light for using in the kitchen to help make things brighter when preparing food. I have also got a couple of portable magnifiers from the low vision clinic at the hospital which help with reading text.
I particularly struggle with anything where there is little or no contrast in colour like grey kerbs and concrete steps. I have had white paint put around my back step to help with this. I also use different coloured chopping boards and choose a contrasting colour to the food being prepared.
Technology is a real godsend with some specific accessibility features and apps for visual impairment, whilst others are accidentally accessible.
The Seeing AI app is really useful for reading written or typed text or describing what is in view. This is particularly handy for reading packaging, instructions and sell by dates on food and will also work for longer documents and letters. The magnifier on the iPhone is also great for taking photos and zooming in to make it easier to see small print and fine details. Screen readers and voice commands on mobiles and tablets will read messages and emails as well as some websites if they are written in an accessible format. Dictating features that turn speech to text are good too, although it needs checking as sometimes there are mistakes when it doesn’t understand what has been said.
Alexa and Siri are both standard products, but can be really helpful for setting reminders and alerts as well as simple things like telling me the time.
I find it nearly impossible to read traditional books now, but the kindle app for the iPad allows me to enlarge the font size. Audiobooks are a great alternative. Audio description on TV and at the cinema are a revelation! I understand much more about what’s going on in programmes and films, especially when it’s dark on screen or there are subtitles.
Theatres and music venues often provide free carers tickets for those with disabilities, including visual impairment and I make use of these so that I can access this form of entertainment as I love live music.
Sight loss certainly adds a different dimension to living with physical disability and it can be challenging, but on the plus side everything is in soft focus so I can’t see dust and cobwebs and when I look in the mirror I can’t see the wrinkles!
I have SPMS and not on treatment