A dark cloud loomed over my January this year. The cloud was hanging right over my heart at Christmas too. No matter how I spun the situation, my anxious mind had a negative answer for it. I didn’t feel positive at all. That cloud was in my way. Much like the beloved children’s book, ‘We’re Going on a Bear Hunt’…
I couldn’t get over it and I couldn’t go under it; I just had to get through it!
The cloud? Was my eye exam at the hospital this week. Even an appointment letter, arriving on the mat, has the ability to make me feel physically sick. My condition is constant. I am aware of it every hour of every day. Nothing makes me feel more visually impaired, than the dreaded hospital visit.
I was booked in for a Visual Field test and then a chat with my doctor. I couldn’t stomach food or even water. I hate all of this. One of the many negatives of a degenerative disease, is that I will never improve. I will only get worse so each visit is always just worse. I also have other medical concerns because I am super special! One of those concerns is my beautiful Ulcerative Colitis. 12 years with my trusty inflammatory bowel situation and lately it has had plenty to say. My UC reacts badly to stress, a diet that’s too healthy and not taking my medication when required.
I’m insanely stressed. I tried to eat more healthy foods and increase fruit, veg and all things green and leafy, as recommended by the doctors looking after my eye condition – this has backfired. The medication…yeah not been great with that either. I’m just too scared to do or take anything, that could speed up my eye issue. Fun times!
My husband is sat beside me like a champ. Doesn’t mention how ill I was en route to the hospital, or just how grim that whole situation really was. We are just sat together in a packed waiting area, full of multi coloured chairs and passing the time. Two hours tick by and I finally see someone….
I have my Visual Acuity checked. That’s fine. During this assessment, I mentioned to the nurse that my current state is less than pleasant. I am just hanging on for as long as I can. Word soon gets around and another nurse takes me to one side, to advise that I need to have 2 scans, a one hour long visual field test and then wait to see the doctor. This is not my first roll around the eye unit. I knew that was another 4 hours at least, stuck in this fluorescent tube!
Thankfully my doctor whittled down my tests to what was necessary, shelved my visual field for another day and saw me soon after my scans. The scans for RP (Retinitis Pigmentosa) are brutal. Strobe like flashing lights that you have to look directly at. Don’t move. Don’t blink. My left eye has a mind of its own under pressure (another delightful medical condition) so it’s like trying to keep a pigeon still under a flashlight!
I get through it. More lights. Flash photography and an ophthalmologist with another bright light. By the time they were all finished, I felt and looked a wreck. I would have had a student looking into the back of my skull with floodlight next but the doctor pulled that plug. He could see I couldn’t do much more. I wanted out. My bed. My bathroom. A fully working body. Vision that wouldn’t fail and a life that didn’t involve any of this crap!
But here we are.
I made a few jokes. He asked me how I was. Not my eyeballs…me. I was taken aback, it was a nice touch and rare. Most doctors treat the disease not the patient. You are what you have. You are no longer a person. You are in the treat, manage or monitor category. Your life has been evaluated and you are categorised accordingly. I have what I have. Nothing new. Nothing they can do. Have a nice day!
The silver lining to my cloud came when they gave me the name of some vitamins I can take; especially as I can’t have the rich and varied diet, that most get to enjoy and that was that. It was over. The best part of the day is always getting the go-ahead to leave. The exit never looked so wonderful.
It took me a day or two to recover physically from the stress of that visit. Mentally it takes a bit longer, to put it all back in the box and get on with living life. The ophthalmologist loved my great attitude and praised my mindset. I appreciate the support but I put that work in. I make that decision daily. Some days I win. Others I don’t.
The vitamins, although I was excited about them, now leave me confused. They contain a high dose of vitamins C & E, zinc and copper as well as 10mg of lutein and 2mg of zeaxanthin. I’m on board with everything except Vitamin E as high doses of that are apparently not recommended for RP. My doctor wasn’t concerned but I am, given these particular vitamins, are used in the main for people with Macular Degeneration. This exact formula is the one recommended by The Age-Related Eye Disease Study 2 (AREDS2). ‘This study was designed primarily to evaluate the effects of these nutrients on the progression of AMD (Age Related Macular Degeneration) and, secondarily, age-related cataracts.’
I don’t think these tablets are a one size fits all operation. They’re not quite in the same league, as the world and its mother, knocking back a Lemsip when things get a little congested! Guess it’s just one of many things I will just have to figure out as I go.
With no light at the end of the tunnel, I can either freak out or trust the process. Today I’m doing the latter.