In the Shadows

My mind struggles on a daily basis to cope with the effects that fms & cfs have on me, to cope with the fact that over time they have progressively gotten worse, and to grieve for the things I have lost. 

I live within the shadows, and the shadows live within me. I live in a world that can neither see nor understand an invisible illness, and what it can not see or understand, is for the best part ignored.

The shadows within me fill the places that once held memories, they dim the light of my soul just a little bit more each day, they are consuming me..and to have no control or ability to stop it, quite frankly is frightening. Losing who you are would scare anyone..

Wolf Sky

One thing I have managed to do is, although slowly, and a wee bit rustily is get back to tinkering with paintshop pro.. 

Sight or Sound?

If you were to lose the sense of sight or sound...which one could you personally live without? If you had the choice, that is, though I can imagine its not something any of us would want to have to choose between. It's a question I've had wandering aimlessy round my head for a little while. It appeared after I received  some rather unexpected news back in March that started this train of thought. It kind of blindsided me, just a tad. I'd already received one lot of not so good news from the medical fraternity in February, the results from an MRI I had last November were finally back and it turns out I have a large Osteophyte on the C5/C6 vertebrae which is compressing a spinal nerve cord root, a cervical radiculopathy is the fancy name for it. Anyway the upshot of that little gem was possible surgery through the front of the neck, I met the neurosurgeon..after hearing all the risks, and the "there is no guarantee it will help" speech and about the lengthy recovery period from such an op, which I can't afford as I'm a full time carer, I decided that I'd try every other possibility first before going down that road. 
Anyway I digress, a few weeks into March and I went for my regular eye check at the opticians..harmless enough...I go regularly, I already knew about any issues with my eyes or so I thought, but the universe swung another anvil my way, I have the beginning formations of cataracts.
Ok so cataracts are quite common but not so common at the age of 48, and yes I know they can be treated with surgery and I will be facing surgery in three to five years time according to the optician. The reason I am told as to why I have them is due to the narrow angle glaucoma they discovered back in 2009, The upshot of all this is that when they replace the lenses my sight will be better than it has been in years because they can reset things like long and short sight...that's great....but and there always is a but, in the meantime for the next three years, I get to literally watch my eyesight deteriorate, colours dull, I'll notice a brownish tint to things, blurring, increased light sensitivity, halos around lights...I already suffer from light sensitivity because of the fibromyalgia, fibro also causes you to have different levels of visual acuity through the day. I don't know why but I always seem to get things that compound the problems of something else!
I know in the end they will treat it and for that I am eternally grateful, because without that treatment I would be blind, it is still the most common cause of blindness in the world today. I must admit though that when he told me, my head felt like it had been knocked clean off my shoulders, I even asked him to repeat himself in the vain hope I'd misheard. Two things scrambled for attention in my befuddled head, one, quite simply the thought of going blind and two, an op on my eyes while conscious..one thing that has always freaked me out is anything near my eyes! It was bad enough when they used a laser to create a hole in each iris when they discovered the narrow angle glaucoma..
When I got over the initial shock, it then dawned on me the impact this is going to have on our lives. Our car is our lifeline and I am the only driver in the family. We live in a rural location and with the disabilities we all have, and I have mobility issues, it simply isn't a luxury, its a necessity. At a certain point I will not be able to drive for a while and I really wasn't sure how my autistic son was going to take the news. I am the only person he trusts as a driver, he can not cope with public transport, it's essential transport for him to attend an equine assisted learning centre which is a 95 mile round trip, and to just basically get around, there is very little, if anything for young autistic adults closer to home. I was also concerned about telling him because I didn't want him worrying about me. 
I plucked up the courage this week and told him, he always knows when something is bothering me. His response was heart warming, he told me I was brave, bless him and then promptly brought a lump to my throat by saying if he could he would give me one of his eyes...
I'm trying not think about it all too much and do what I always do take it just one day at a time..
I guess because I'd been diagnosed with something that can take someones sight I began thinking whether I'd have preferred to have something wrong with my hearing rather than with my sight. I love art and nature, the colours, the vibrance, the beauty that is on this planet and the skies above, seeing the faces of the people I love, oh and so much more...I really wouldn't want to be without sight, but then I really wouldn't to be without sound either..music is the soundtrack of your life, it triggers memories, thoughts, emotions, it soothes the soul, heals the heart and calms the mind..
Fortunately it is not a choice I have to make :)

A Bit at a Time...

Well I actually had started writing a post which is still sitting in draft as I hadn't gotten very far with it. I find it so hard now to actually find the words I want to use, once upon a time it came so easily, now each sentence is a struggle. Nothing "flows" anymore, a sudden thought will glimmer, surface and is gone in a flash, leaving me grasping at thin air, in my head it feels like I'm running around in my brain desperately trying to find the information it once contained, years of acquired knowledge and memories, but there's nothing there but empty filing cabinets with a few strewn papers on the floor, and I feel like I've been robbed, that some of my most treasured possessions have been stolen from me. As I try to grasp what I can from the strewn papers, the fog comes in and takes even them from sight. it is so frustrating.
Something happened today that I really wanted to post about but I guess I'll just have to make do with baby steps, a bit at a time. When you have a chronic illness you don't get a thing called choice...you don't get to choose when you want to do something. Fibromyalgia steals from you and deals the cards, and yes I fight back every day, my reward will be a small accomplishment...and my punishment will be severe...

Where to Start...

It’s been a long time since I’ve written anything, probably somewhere in the region of five years or so. I’m still trying to shake the cobwebs out on sorting this site out but when you have brain fog issues, that’s easier said than done!So where to start? Honestly I haven’t a clue…I think I need to go and regroup my brain cell on that one..so many things I want to write about but trying to keep a train of thought is impossible when other trains keep crashing into it..