Since starting this blog I’ve talked about my Rheumatoid Arthritis and living with an invisible illness. What I have talked less about is how my RA effects my eye. I thought about why that was and I think it’s because I have had eye problems for so long now, 25 years, that it has become normal for me.
Whilst it may have become normal for me to live with uveitis (arthritis in my eye) and glaucoma (a side effect of the arthritis) and has become easier for me to accept it is still always there.
I am reminded of it everyday when I take my eye drops, which is also very normal for me. I’ve had eye drops everyday since the age of 5 and the frequency has varied from twice a day to 40+ times a day depending on where I am on my treatment journey, and that is very much what it is , a journey.
I would say that aged 5 to 20ish the journey was pretty uneventful (accept the initial diagnosis) and mainly consisted of me going to regular hospital appointments and taking my drops. However 20 onwards was a turning in the road, and different track.
I might write a post about every step of the journey at some point but how do you condense a decade of complicated history into one post? It isn’t a job for today.
In summary I have had 8ish sight saving operations on my right eye during those 10 years and have taken many different eye drops and medications. Medications that have made me so ill I dropped to a size 6 because I couldn’t eat, that made me so tired I would fall asleep all the time, that made me bloated and that gave me pins and needles in my face.Ultimately these saved my sight, for now.
The fact is there is no cure, there is no medication and no operation that can solve this. There are only sticking plasters (don’t get me wrong, they are pretty sophisticated sticking plasters) that can patch me up… and to me this is the cloud that never clears.
I appreciate that I have made this sound pretty dreary and pessimistic so far and realistically it probably isn’t as bad as it sounds.
I have a great life, an active life that I love, but every now and again the cloud thickens.
Sometimes I worry that the quality of live I have now is going to be cruelly snatched away from me, perhaps temporarily (months ) or more permanently.
What many won’t realise is that the medications I take pre operation, the operations themselves and the recovery change my life, detrimenting it in the short term, improving in it the long term. It is a balance.
Managing the precariousness of your own life is a challenge. I have to remind myself constantly to live for the present not sit in the fear of the future.
On certain days, days like today (check up day) it is harder than others. Knowing that the results of the check up have the potential to change my life…