When you come to the end of your rope, tie a knot and hang on

I am running out of room for knots.

I have a history or R & R type of disease. CFS, then MS, then the obvious dx of depression and anxiety. Which we won't even discuss, cause I am certain the latter is the dx everyone has received. CFS and MS were thrown out the window in favor of the unspoken and unproven. I am certain after a certain point all we know is what we don't have.

I have sunk into Relapse with very short and incomplete Remission. I have had a long crash and I wonder if a remission is in sight.

This most recent has left me mostly bed ridden for several months. The vertigo is so severe standing is difficult, let alone bending over to look for that ball of yarn that rolled under the bed.

My vision has been involved since 2012 when I awoke with double vision an vertigo so severe I had to be hospitalized. I could not drive because of the double vision for about 6 months. Later on there were attacks to my vision, leaving my eye muscles rippling. This has been diagnosed. (I do believe I had problems with light for many years prior, as bright light, blinding snow reflection on a bright sunny day, or alternating light as driving past trees on a sunny day would cause what I thought was a migraine of the optic nerve.)

Lately it seems this eye muscle issue has spread to my iris. I have always had an intolerance to bright light. Here I am in western WA state where people are craving the sun, and I want to hide in a dark cave. I have now been able to detect the struggle of muscles in my eyeballs. It takes a long time for my eyes to focus in the a.m.. The sun is intolerable. I could actually see the iris of my right eye flickering to adjust. Like the aperture on a camera lens. Eventually it became like a bright light shining into that eye with no adjustment.

So my latest knot seems to be hanging on to my vision. I would have been totally lost without my knitting, as I mostly rest in bed. I find myself wanting to avoid rooms with sun, even when I can walk. I no longer open the blinds in my bedroom. When I can sit outside for a few minutes for some sun with my dog, I have to cover my eyes.

By 9 p.m. my eyes have shut down. No more struggling to remain in focus. They are having extreme fatigue and pem.

I am a Christian with strong beliefs, I have never felt sorry for myself or had a why me attitude. I have always fought and never given into this horrible condition. However, I do wonder what next?


So sorry to hear about this. PWR & I are praying for you. We don't know what to say, except that we care and we hurt for you. In case you weren't aware, there is a Christian group, including a thread for prayer requests. If you'd like to post this there, you're welcome to do so, or I will do it for you if you'd like.

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