If you had asked me a year ago, ten years ago, or even two decades ago if I ever thought that Myalgic Encephalomyelitis (M.E.) would cause me to flee into the dark, I would have responded with a resounding, “No.”
Today, I know that I would have been wrong … very wrong.
Since January of 2011 I have been adapting to a life void of color. It is one that has now become eerily reminiscent to my beloved hobby: black and white photography.
As a person that refuses to allow M.E. to determine the broad strokes of my life, I have made numerous changes to adapt to the devastating changes occurring in my eyes.
Fortunately, I have been blessed with many M.E. friends who also suffer from this devastating illness. Okay, maybe fortunate isn’t quite the right word!
Their collective experiences and wisdom have afforded me the ability to adapt, change and prepare. How well I have done that is yet to be determined.
For my readers who are also struggling with the horrific pain that comes with sensory overload in M.E. I thought I would share with you about this part of my journey in hopes that my struggle will make your journey easier and to remind you that anything is possible as long as we continue to hope and to help each other.
I have now been living in reduced light since January 2011, and as of June 10th, I have reduced that light even further. I ended up spending almost 8 weeks in total darkness. Enough time to drive even a sane person over the edge.
I have recently had a period of increased light interspersed while still having to spend several days during the week in near darkness again.
As someone who abhors the dark this has been an enormous challenge emotionally. It wasn’t until I started striving to find the blessing and the positives in the dark that I was able to let go of the horrible fear of the bad that might happen in the dark.
Despite my perspective change, however, living in constant dark still has moments of desperation due mainly to my intense desire and need to embrace the light. There is a major sense of disorientation when I have to spend large amounts of time in the dark. My body has no idea when day starts or when night ends. I think I now have a small window of understanding of why our captured soldiers find it so hard to tolerate absolute isolation in the dark. It really does wreak havoc on your psyche.
Luckily for my mind, emotional state and spirit, most of the time I am now able to embrace the dark as my friend and companion – well, a good deal of the time anyway – when I look at it as a gentle, kind thing I can do for my body in order to enable my eyes and brain to rest and recuperate. A necessary and important step I think (and hope).
In addition to being in the dark a good deal of the time, I have added anti-glare screens to my Blackberry and MP3 player. I have to tell you, though, that I think this was a waste of money as it does nothing to dim the amount of light I am seeing.
In addition, I discovered that it wasn’t just light that I find so painful and devastating but color and even texture. If I am looking at something with too much color or texture it simply is just too much for my brain to process. Inevitably, too much light, color and texture have the very real potential to overtax my brain and drive me into pain so severe I can do nothing but beg for God’s grace and strength to get me through the episode.
Because of the unimaginable pain that results when my eyes are continually exposed to light, color and or texture, I decided to dim the back lighting on all my devices to the darkest I could as well as turn all the screens (when possible) into grey scale backgrounds meaning that everything is now grey and white or black and white: much like my beloved black and white photos.
As a quick side note, let me again describe this pain to you so those that think M.E. is just some mere inconvenience or ‘it’s all in my head’ kind of thing. The pain in my eyes is most similar to brain freeze. You know how you instinctively reach for your head and eyes when that happens. This pain stops you dead in your tracks and your whole focus for that moment is on the intensity of that violent pain.
Well take that pain and multiply it by ten and concentrate it in your eye balls and behind your eyes! You might be getting a small inclination to the horrific pain that is occurring. There are times that I have wondered if my eyes might actually explode in my head because there is this building pressure in my head and eyes (I’m assuming this is the result of inflammation or infection in the nerves in the brain). It’s hard to describe but the intensity of the pain and pressure is overwhelming. It has now become my ‘red flag’ to stop and desist now.
Additionally, I usually have such severe head pain with the eye pain that I cannot lay on my head on any side. I usually have to sit up and hold my head where my TMJ meets my ears as that is the only place that does not hurt.
Or … I climb into the bathtub as I can find a way to lay in it without touching my painful head and rest to some degree.
You would think this pain is enough for one human to endure but I also get violently sick, dizzy and swear I am going to vomit any second. As I stated above, I often end up passing out from the severity of the symptoms.
This is why comments made recently in online venues by some as of late (doctors) describing my illness in a benign way make me so angry and frustrated. It is obvious that unless you live here, you just have no frame of reference to the havoc this illness wreaks on my life … and millions of others. But I digress …
In addition to the above changes and out of necessity, I have also come up with this creative and inexpensive way to write my articles on my laptop.
I recently purchased a few 12.5” X 19” bubble Mailers. I sealed the mailer closed and then cut the longest side open. This created a ‘glove,’ if you will, which allowed me to slide it over my monitor, thus, cutting out the light!
I now am able to type my articles without the monitor, thus, without the intrusive light and colors! I don’t find this problematic as I was taught many years ago, in high school, to type “blind”.
Who would have every thought that this skill would have come in handy three decades later?
In addition to blacking out windows, dimming devices, and covering my monitor, I still wear sunglasses anytime I find myself encountering light … sometimes even in my now, often, darkened apartment. (You should see my PA trying to read or do other things for me in the dark. A little challenging to say the least!)
While I strive to keep the faith/hope and stay positive, I have to be honest and say that I find myself quite flummoxed when I research about the sensory overload in M.E. Shockingly there is barely any research or articles on this subject.
Frustratingly, I now have a handful of friends who are suffering as I am with one of them now technically blind, mute and deaf due to the severe sensory overload they are enduring. Their friends and family can only communicate with them through sign language.
Any yet again, there is very little research on the subject of the sensory overload and pain incurred by the sickest patients – 25% of all who have this illness. There is also very little public awareness about this aspect.
Even more disturbing is how little advocates for this illness discuss this subject. Is it because they do not know about it or is it because it might be too ‘painful’ or difficult for healthy people to understand?
Why is this sensory overload issue not being discussed more when it completely removes all ability to function ‘normally’ in a person’s life? And why is that not so problematic for those who advocate on our behalf that they feel compelled to constantly speak about it?
If you can’t endure noise or light, you can’t partake in the simplest of your daily functions from reading, television, movies, leaving your apartment, showering (unless you do it in the dark or dim light which I have succeeded doing), paying bills, connecting with others, responding to emails from companies or doctors, and on and on.
You are literally thrown into complete solitary isolation just as many of our soldiers are when captured. Again, the similarity is quite unreal to me. We know the devastation that being in continued dark and isolation does to our men and women in the military, yet, this aspect seems to garner no serious concern from those in the medical, research or advocacy arena. At least not in comparison to the devastation this does to those struggling with the sight and sound sensory overload.
I don’t know if it is ignorance, disregard, or something else but to not discuss the pain and consequences of sensory overload in ME as a major neurological component of ME that so many are enduring is utterly stunning and disturbing to me.
Most people, who do not have this illness, do not seem to understand that M.E. is a diffused (meaning over a broad area and/or multiple injuries) brain injury to the Central Nervous System (CNS) specifically the vascular system.
The challenges that arise from dealing with this kind of sensory overload and the pain are beyond anything I have ever experienced. I’ve actually been thinking about Helen Keller a lot lately, wondering how she adapted to being blind. However, I realized that her situation isn’t quite the same as those with ME because she wasn’t in constant pain as a result of light. Yet, I think – perhaps – that learning how to adjust to living in the dark as a visually impaired person is probably something that I need to think about and look into as I think it would help me adjust to those days when I am unable to function very well because I can’t see (because I am unable to tolerate light thus am living in the dark.) I also think it is an area of help that could be offered to many with this illness.
Of course, when the pain is so severe, functioning is a completely moot point as I am unable to anything except lie still, praying for the pain to end.
The last episode of severe eye pain that I had was on May 17th, (these episodes literally get burned into your memory) and lasted for 7 hours. It ended when I passed out because my body could no longer tolerate the level of pain I was enduring.
Again, I am quite flummoxed as to why these symptoms are not being discussed more in the public arena. I have to say that even I, being ill with this illness at a moderate level since 1992, truly did not have a thorough understanding of its devastation until I slipped into a severe state of the illness myself.
That is one of the reasons I have come to understand why it is so vitally important that we do not – within the ME community – judge ourselves and our illness against each other. I truly have no way to completely understand what you are going through because I am not there … and vice versa. I am not sicker than you or vice versa. We all have ME and are doing our best to deal with it.
The best thing we can do as a community is to be there for each other, without condemnation, offering our love, support, encouragement and suggestions of what has worked for us.
Well, I seem to have gone off on a rabbit trail. My apologies. THAT seems to be another area I am having to cope with – distractions and trying to follow one thought. (head shake/smile)
Basically, I am adjusting … or perhaps more accurately, I am striving to adjust to the changes I’m encountering from the eye sensory overload. I’m beginning to understand that for now that is probably the best I can do as there is so very little information out there on this issue and how to deal with it.
Maybe as more and more of us speak up about the sensory overload issues we are having, this problem will move forward, front and center, and receive the attention it should.
In the meantime, I am learning to find ways to live and adapt in a black and white world, while gloriously and humbly appreciating the times I am able to embrace and live in full color!
Determined to continue forward,