As my readers know, the months that have followed my exposure to a toxic chemical have been full of challenges and changes. Even though I would rather forget about much of 2010, it appears that some of those challenges have now followed me into the New Year and I now have to confront them and find way to overcome or work around them.
As you know I have been having a lot of trouble with dizziness. So much so I started upping my water and salt intake. I am finally seeing some positive results in this area and am very thankful for that. Sunday and Monday I went the whole days without any dizziness at all. Quite impressive when I think about the many weeks and months I have been struggling with these episodes.
But now I find myself confronted with yet another challenge. It is one that I have not been remiss to talk about here, but more that I just didn’t connect the dots with all I have had on my plate as of late. However, I did start making the connections in December and then desperately tried to ignore them. The thought of having one more thing to deal with was just more than I could handle in December.
But this problem just wouldn’t go away so I finally emailed my wonderful friend, Laurel , and asked her some questions as well as for some information, if she had any to share. Laurel graciously did just that and I found myself reading someone else words describing the very thing I was struggling with.
As a result, I wanted to share these words from Alexis of, The Corner Room , who has severe ME/CFS as they describe what I have been experiencing. She writes,
A typical crash, for me, includes increased fatigue, mental fogginess, headaches and weird pains, achiness, and increased sensitivity to noise. Until last year, I didn’t realize that my eyes could crash on their own, separate from my typical, whole-body crashes.
[...] This current crash has two distinct parts: Extreme sensitivity to light and profound weakness of the eye muscles, which makes it impossible to focus on anything without major discomfort. My eyeballs hurt and feel exhausted with a minimum amount of movement left or right, up or down. The muscles in my face around the eye sockets feel strained and twitch periodically. [...]
When I read her words, my heart just sank because I realized I was now experiencing the same issue with my eyes, although not as severe as what Alexis endures.
Since the accident last June, I have found it harder and harder to read. A book that used to take me three to four hours to polish off, now takes me the whole weekend to read.
In addition, I have had to stop reading blogs that I really enjoy. On one blog in particular, the writer likes to write their posts in one long paragraph. Since the accident, by brain can no longer process what I am reading. I’m even finding it difficult to read blogs with large paragraphs.
I think that is one of the reasons I take care to keep my paragraphs here just a few lines because I understand the difficulty I am having reading any paragraph that contains more than three or four lines.
On another blog, the writer changed the color of her words to blue and red. It is a flat read and blue but that changed caused so much trouble for me that I just could not read it anymore. My brain couldn’t process what it was reading and my eyes would go blurry and become painful, achy and tired.
I also started noticing that if articles or posts contained symbols, medical terminology, or scientific symbols; my brain could no longer process that and would just blank out. My vision would get blurry and my eyes would ache. Even my brain would hurt (the only way I can think to describe the sensation).
Most horrifying for me, however, was the fact that I was watching the number of books I was reading dwindling down to a mere sampling of what I used to digest. The thought of not being able to devour books was something I could not and did not even want to contemplate.
Like Alexis, my eyeballs ache. The muscles in my eyes just get really tired and I have the twitching happening as well. More amazingly, the muscles of my eyes sockets feel like someone is stretching them beyond their elasticity. The muscles that surround my eye sockets are sore as well. It is a really odd sensation.
I don’t normally even notice my eyes, especially the muscles, and so to suddenly feel the achiness, soreness, and fatigue is just weird.
Despite all the above, that was not the most unusual symptom I have been suffering. When it first occurred I thought, “Cool, I haven’t slept that hard in years!” It didn’t take too many episodes, however, for me to realize that this mini-crash - as I call them – was directly tied to the fatigue in my eyes.
I suddenly understood that if I pushed when my eyes got tired and achy, the mini-crash would result. But what was shocking to me was that when my eyes could not continue and this mini-crash occurred, it would then cause my whole body to run out of energy and I would have to go sleep. I was completely drained. The eye crashes were causing my body to crash. Or at least that was how it appeared to me.
More stunning was the speed at which my eyes would cause my whole body to go into a crash. It was as if someone pulled the chain on a light bulb and my energy would just disappear. I would turn over and go right to sleep for hours. It was unbelievable and if I hadn’t experienced I’m not sure I would have thought it was possible.
So I took the information Laurel shared with me and decided to download Natural Reader so that I could read blogs, emails, etc., using it instead of my eyes on days that my eyes are really struggling. As a matter of fact, I have already started using it! So easy to set up and so easy to use! The hardest part is getting used to the digital voice. I’m thinking I might like to listen to a man’s voice with a British accent more so I might upgrade so I can get it!
I also am going to invest in a program that allows me to speak and then turns my words into text. I’m still checking out my options here though as this will be a more extensive learning process and program.
In addition to all that, I am in the process of purchasing an anti-glare screen for my laptop to help cut down on the sensory overload my eyes are incurring when looking at the brightness of the screen.
Writing is what I live to do. As Charlotte Bronte once said many epochs ago, “I write because I cannot not write.” If I lose the ability to do that, I’m not sure I can stay determined and continue forward. Learning to read in a different way, that I can do. Not being able to write, that is something that I cannot do.
In addition to the struggles I was running into with reading, I also found that I was no longer able – on most days – to watch four or five movies back to back like I always had. I used to call these my marathons. Unfortunately, my eyes really got tired and super achy so I found myself slowing down and watching just one at a time, or if I pushed it, two.
As a result of my eyes struggling I have decided that I am going to post-pone all my furniture purchases and take the money and see my old (as in previous) non-VA eye doctor.
I remember the first time I saw her. She looked into my eyes, and without me telling her, she said,
“Oh, you have ME/CFS.”
When I asked her how she knew, she told me she could tell by looking in my eyes. Any eye doctor that knows about ME/CFS and can ‘see’ the ME/CFS in my eyes is the doctor I want helping me now.
Unfortunately, I know the VA won’t do this because I have been complaining that my glasses are not right for at least three years now. Sadly, the VA thinks the extras I need are just that, extras, and as extras, are not covered.
The CFIDS Association suggests getting an eye exam and getting glasses that will help undergird or support the eye muscles, especially when they are exhausted (At least that is my understanding of what I read). So, I have decided I will spend my own money and get whatever I need after I see Dr. Roddy.
On top of all that, I realize that I really need to get the brain scan done, even if they have to put me asleep. Something happened to my brain when the Kilz was sprayed in my apartment and if the VA is willing to pay for the brain scan, then I really should do that and see what, if anything, it shows.
I have also applied to the Library to have my books brought to me, I followed up with them this past week and was told that they would call me back this week and finalize everything. I think now I will switch to audio books so that I can give my eyes even more rest, and retaining my ability to read, just in a new and different way.
As for reviewing books, I am hoping by making these changes that I can still read the books I am sent, even if it takes me a little longer to do it, thus, not completely losing my ability to read book I hold in my hands; at least not any time soon.
I have always had this one fear that I have never been able to overcome even with my faith; being alone in the dark. My eyes are important to keep that nightmare from happening. I have to do whatever it takes to prolong my eyes, and if allowing them the ability to rest when they need will do that, then that’s what I will do.
What is so ironic to me in all of this is that I had always assumed resting and pacing only referred to my body as far as ME/CFS and FMS was concerned. It never dawned on me that my eyes, which are muscles, would also need to be taken care of by resting and pacing.
Despite these new challenges, I am as determined as ever to fulfill my purpose in this blog, in invisibleawareness.org and in the books that I want to write.