Continuing to struggle with my eyes at the moment. Not looking for sympathy here. Just providing an update for those who are interested and treating the act of dumping my brain online as some form of (affordable) therapy.
So as previously reported I have been on steroids (oral and drops) to tackle bleeds and inflammation in both eyes for four months now. The sarcoidosis is hitting both eyes differently. I have inflammation in both eyes but for my left eye it is in the rear (posterior uveitis) and in the right eye it is in the front (anterior uveitis). The symptoms for each are different - my left eye struggles to focus and has black floaters whilst my right eye is in some pain and struggles with light (photosensitivity) so wants to close the whole time.
There is a burst blood vessel in the back of my left eye and whilst it is not directly impacting on my sight except for floaters the fear is that new blood vessels will form over the area of the eye responsible for vision resulting in vision loss.
In the meantime navigating the highs and lows of medication (steroids and anti-depressants), primarily waking up ridiculously early (4am not unheard of) and crashing during the day. I continue to find certain situations really difficult, especially when it gets dark due to the large visual contrast. I've never had great night vision but now find it really tiring trying to concentrate in low light levels. Perversely though also finding bright lights really tricky as light bounces off the blood cells floating in my exquisite ocular jelly.
I'm feeling weirdly cathartic about this all - maybe it is the medication but it is what it is and it is making me think and reflect on what is and isn't important and trying to enjoy what I can out of life at the moment.
I worry more about the impact this has on those around me - especially Peta at home and Matt at work - as I just cannot do the things I would like. The double whammy of a lung condition that makes walks and general physical pursuits harder and now eye problems that make seeing and doing things difficult.
Saying that it is quite upsetting at times and have been prone to the occasional emotional outburst and bouts of melancholy. Struggling to do what you've spent the last 17 years working hard towards is incredibly frustrating. I just cannot spend all day on a screen like I used to and finding I need days off to rest my eyes and longer breaks during the day just to get through stuff.
Finding drawing therapeutic but not sure if that is just the act taking me into a different headspace or at some subconscious level I'm trying to do it whilst I still can (again, want to emphasise here no immediate risk of going blind but cannot say it is not on my mind).
Anyway, if you are remotely interested am dumping my output over on my Instagram chiefly - and if you want any of my prolific 4am doodlings then just drop me a message. And if you want to pay for it even better!