Marios Day to Day Life with Usher Syndrome

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My day to day life with Usher Syndrome (Retinitis Pigmentosa) is a constant fluctuation between moments where I can ‘get by’ and moments in which my disability presents real challenges that people with normal vision do not have to deal with. Whilst I have good central vision my peripheral vision is slowly deteriorating and my night vision is pretty much non-existent now.

As a 26 year old living in London it presents a lot of problems, busy streets might as well be an obstacle course and I do not go out at night if I am not with people who know about my condition or that I can trust to look out for me should I need the help. During the day time I often bump into people in the street, walk into street posts, trip over steps and on some occasions I have not seen a car when a normal sighted person would have. And at night time all of the above is magnified tenfold.

My day to day routine is quite often built around taking very familiar routes that involve avoiding busy streets and avoiding roads to cross because I often don’t feel safe doing so when alone, even if this means making my journey take longer.

This is an average day for me and the challenges I face:

  • I rely on a lift to the gym each morning as it is school hours so the streets/roads are very busy and I do not feel safe. I go to the gym early because it is when it is least busy.
  • In the gym itself it is a massive challenge, the lighting is quite bright/fluorescent which makes me feel disorientated; rarely a day goes by at the gym where I do not trip, walk into something or bang my head.
  • Walking home from the gym isn’t bad but it is dependent on the type of day it is. If the lighting is low or even very bright extra care has to be taken especially when crossing roads. I always walk into people regardless, or trip over the kerb or walk into a street post.I work from home which isn’t a challenge in itself, but the simple fact I do work from home is due to my condition. I want to work where I can socialise with other people as I am a sociable person.
  • I can cook for myself, clean etc. However there are smaller challenges within these activities that present problems. For example I may knock a vase over, or if I drop something small on the floor there is pretty much no chance I will find it if it didn’t stop exactly where it fell. I constantly knock over pots, glasses, pans with food in them due to not seeing them.
  • Socialising with friends on the weekend is difficult, it has to be friends that I trust and who will travel with me in the dark.
  • Going from one room to another, whether in my house or any other building always causes me difficulty due to my eyes failing to adapt to the change in brightness.
  • I get headaches most days, especially when I am out due to having to concentrate so hard on everything I do.
  • A final thing I want to note about my day to day is that mentally it is extremely draining and I suffer from anxiety/depression due to my condition.

Obviously I cannot drive so there is also the matter of having to use public transport if I want to go anywhere which is very costly, and unfortunately many London Underground stations present challenges with my vision due to crowding or poor lighting. I have no alternative.

And yet despite all of this I am ineligible for PIP support because I can seemingly do things by myself, there is clearly something very wrong with the system when someone who literally cannot step outside of the house in the late afternoon/evening  isn’t eligible for PIP support, someone who would be putting themselves and possibly others into danger by doing so. But because I can cook for myself, get dressed and navigate a street I will score well below the boundaries to be entitled to PIP support despite these things often presenting constant challenges.  When it comes to being partially blind people do not seem to understand just how much we rely on our peripheral vision and night vision until we start to lose it, It seems that if you have functional central vision then you are ‘fine’. PIP support needs to be allocated on a case by case basis, we are all difficult and have our own challenges and problems to deal with, it should not be down to a point scoring system and in the hands of someone who just does not understand the difficulties you have to face. Most of all it pains me even further that there are people out there who are far worse than me and still are not entitled to the support they need. 

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