I'm going to apologise firstly because this is a post about my illness, it's not attention seeking or a personal pity party for one but I know after writing this blog for over 5 years, that the people who read this are my friends in either real life or virtual life and it's been the place where I pour out my heart so that's what I'm going to do.
After a fabulous weekend I've certainly been paying for it health wise, thanks to this damn illness that I've been stubbornly trying to ignore. Well it seems that it won't be ignored and it has made that perfectly clear this week.
I've got a neurological illness called iih (intercranial hypertention) , it basically means that the cerebral fluid that is in my head is at a raised pressure. This raised pressure puts pressure on my optic nerves and has changed my quality of vision, I see a bulge in the middle of straight lines which is very annoying when it comes to reading or looking at anything with a straight line.....so most things, it has also reduced my field of vision which is monitored at the eye hospital regularly, my colour vision has changed in two small patches which look like triangular camera flashes and my night vision is pretty poor too.
Ontop of that I have soul sucking fatigue which is amplified by the medication that I'm taking to reduce the pressure in my eyes, a daily headache which isn't relieved by anything, nausea, photophobia, and when it is really bad it feels like my brain is working slower.
Yesterday I was trying to change a few things in a letter I was typing and I could not figure out how to sort out the spacing on a paragraph, my brain knew what to do but my hands and eyes just weren't working at the same speed, after dropping the keyboard and using every bit of energy I had to concentrate I finished it and cried in furious frustration.
Frustration is what I'm feeling the most at the moment, frustration that I'm inside the house on a sunny day because I know the sun hurts my eyes and my head, which in turn makes me sensitive to anything therefore I become a crabby, moody mess which is no good when you have children, so I'm starting to have to make choices.
For example, Do I go out and enjoy a nice long walk in the sun in the morning, get some well needed fresh air but be so gut wrenchingly tired by the time the children come home from school that I have to go to bed, or do I hide inside the house but be fine for when the children come home?
I've made that choice this morning to stay home because yesterday I chose the first option and after nearly throwing the computer out of the window in frustration I went to bed to try and sleep off the brain fog and thumping headache. Then I went to band rehearsal which I'm not playing well at either, I feeling like I'm doing everything at 50 percent and not even doing a good job even then.
So what's is the future? Ŵell the damn thing is incurable so it is managed by drugs and apparently weight loss can help so I've dropped 32 pounds over the past two months to see if it reduces my optic disk swelling, I'm back to university in a week and I don't know how the illness is going to react but I will finish my degree even if my eyesight doesn't recover or gets worse.
And me? Well it's been hard to come to terms with having a chronic illness, I feel like I've lost a lot of my independence, the regular hospital trips and the invasive procedures like the lumbar punctures are quite uncomfortable and expensive thanks to hospital car parking charges!! But my husband has been my rock as always and I hope when I go back to the hospital next week they might have some good news for me and the swelling in my eyes has reduced.
This is what I'm facing at the moment and it's tough really tough, having to let go of my 'normal' self and having to ask for help and learning to say no when I'm having a bad day is now a reality, so I apologise if I seem distant and I apologise that I'm not my cheery self. I may look fine on the outside but inside I'm not fine, I'm just trying to reach out into the mist.