Well it had to happen sometime. I’d been pushing myself to keep going to deal with everything that was thrown my way with a positive and mindful attitude and then keep on going.
The amount of energy it takes to get up each day and soldier on through the headaches, to deal with the vision loss and vision fatigue, to deal with continually adjusting my life to meet my restrictions, to understand my changing prognosis, to keep up with the demands from my day job, trying to learn how to work part-time and learn the assistive software, trying to maintain some study so that I can complete me Wellness Coaching certificate this year, to be social and to rest, it’s just so much.
It’s really hard being a sick person, I don’t want to be known or seen as a sick person, but my body doesn’t have the same energy or capacity as it used to and my return to work restrictions from my doctors confirm that I’m not at full capacity and nor should I be. I have 20-odd stitches in my eye that are like an open wound and constantly remind me that they are there through pain, aches and headaches.
I’m anxious 24-7 about doing something to hurt my eye. I know the doctors meant well when they told me to be careful, but having so much onus put on whether or not I’ll gain sight from this graft is just too much.
I also have my nut allergies and I’m more afraid now of going into anaphylaxis than ever before because of the risk that the allergic reaction or the adrenalin from the epi pen could cause the graft to reject. At least one meal every day I’m anxious about eating, this isn’t helping my body to heal.
My latest vision loss is likely to be attributed to over using my eye as the cornea hasn’t deteriorated any further. That means that by going to work and looking at the computer, by driving, by cooking, by watching TV, by hanging out with my friends, by just being I am risking losing more sight.
How do I cope with this?
I came to work on Monday and saw all of the tasks I had due and timelines were changing and stakeholders wanted my attention left, right and centre. I looked back over the last three weeks and realised I hadn’t had the capacity to learn my new Jaws screen reading software as I’d tried to keep up with the work and just do a little bit more. This wasn’t good, this will not help me eye sight!
So I lost it, I couldn’t stop crying. I called my dad and said I wanted to stop work, sell my house and move in with him. It’s too much pressure. I don’t want to be doing anything that will risk my eye sight. I want to do a good job at work but I can’t seem to balance it.
I had a good chat with HR and my boss and we agreed I should take some time out to get myself back together. I’m so anxious and stressed I’m crying over everything and everything seems like a struggle. I haven’t slept in weeks, the thought of food makes me sick but if I don’t eat I get dizzy. Life is really hard in my head right now.
What is peace...