Do you know that song The Sound of Silence? I’m sure you do, maybe it’s even your favorite song. I’ll be honest, though, I’m not much of a Simon & Garfunkel fan. Somehow, however, the song has been stuck in my head lately, probably because the lyrics are so relevant to my current situation, albeit in a more literal sense than I believe they were intended.
The title is pertinent to my condition, as silence seems to be the only sound (if you consider it a sound) that doesn’t aggravate my symptoms these days. The opening lyrics of the song are especially relevant to me right now, although I don’t exactly consider darkness my friend, and I certainly don’t think it’s worthy of the affectionate title of “old friend.”
I have become much more sensitive to light in the last few weeks. I often find myself in a completely dark room for most of the day, if not the entire day. In the few instances that I absolutely need light — usually while flushing my IV or looking for something in my bed — I have had to cover my eyes with a washcloth while my caregiver turns on a small flashlight. And I also have to wear sunglasses to block out even the smallest amount of light during the day because my eyes and brain are so sensitive to it. In the evenings I’m lucky to catch a few minutes of dim light as night falls over the mountainous landscape outside my room.
But there are other symptoms that have begun to worsen as well. I am back to wearing ear plugs almost the entire day, with a short reprieve from the small silicone plugs at night when the world around me becomes calm and peaceful for a few hours. My muscles and joints are filled with pain throughout the day — my hands ache and burn as I type these words on my smartphone’s dim, grayscale screen set to protect my eyes.
These conditions make it so even the slightest bit of overactivity can ensure that my body pays a price for days or even weeks in recovery. To avoid such repercussions is to not be human, and I don’t know about you, but it’s really hard to not be human — to not indulge in human tendencies because they go against conserving what little well-being you cling to. It is inevitable that I overdo it and as my body throbs in pain I end up hating myself for merely being human.
Since my condition has started to flare up I’ve been presented with a couple theories as to why this has happened.
The October Slide
Beyond my increased pain, unrelenting nausea, and sensory issues, my mobility has also been impacted. A few weeks ago, as part of my master plan to get outside and explore more, I bought a wheelchair. For a brief moment in time I was able to get outside after I made the transition from my bed to the wheelchair. But soon after I began to find it increasingly difficult to sit up and transfer my body to the wheelchair. Some of my friends have suggested that this dip in my health may be related to what some people with POTS call “The October Slide,” or people with MECFS call “The November Factor.” The idea is that those of us with these conditions become significantly worse during the fall months. Now, I would love to dismiss this as coincidence, and to be honest, the October Slide sounds more like a dance I did in high school than a medical phenomenon, but the truth is, thinking back on the seven years that I’ve been sick, all of my relapses have started around this time of year. Okay, I know, some of you may be thinking “Oh sure, that sounds like seasonal depression — lots of people have that,” and if you are thinking something along these lines let me assure you it’s not depression; oh, and because you thought that, now I’m going to send someone to egg your house. I’m so aggressive, I know.
The phenomenon of October illness is definitely not seasonal depression, although it can be depressing when it happens. The truth is, I first became sick in November; a few years later, after an upswing, I relapsed in October; then I became housebound a couple Octobers later; then I became bedridden in January and now, after another upswing, I once again find myself relapsing in October/November. As many people with similar conditions to mine have mentioned, there is a noticeable pattern and correlation between the fall months and relapses of chronic illnesses — all my relapses have occurred between the months of October and January. I don’t think that’s a coincidence, but I also have no idea how to explain it.
Someone recently sent me an excerpt from Dr. Bell’s book, Faces of CFS. In it he mentions the phenomenon of the October Slide, saying how each year in October he got an influx of people with MECFS making appointments and phone calls to his office, which one could easily chalk up to things like the return of flu season or kids going back to school. But he also seemed to suggest that the issue was not exactly related to the flu or people getting colds. After all, these people were having flare ups of their MECFS symptoms, which include things like POTS, as well as light and sound sensitivity, conditions that are more chronic than a cold or flu bug.
Mold and Multiple Chemical Sensitivities
As for my recent October Slide, some friends have suggested it could be related to chemicals or mold spores released into the air in my home. The reason for this is because I recently had some construction done on my house. Perhaps I am reacting to the materials used in the construction, or perhaps mold spores from the subfloor and wall are to blame. This may have made my condition worsen, but honestly, I don’t think either is the case. For one thing, my reactions to mold and chemicals are usually more acute and sudden, not chronic and with a gradual onset as my latest slide in health has been.
So while I haven’t been able to get out of bed for the last month, and I miss wheeling myself outside, I am still grateful I can enjoy the view. In some ways having double doors in my room and being in bed is even better than using my wheelchair to go outside. It is, after all, like having my bed outside. My body may feel awful, but for a few minutes at the end of each day I am able to open the doors and let the fresh, cool breeze, and lovely smells of the forest waft through my room. And that is such a gift.
While I may not be doing as well as I was, I’m determined to stay optimistic, or at least pragmatic, about how I handle this slide. I’m determined to enjoy the little blessings in my life, things like clean sheets, good audiobooks, eating tasty food, and listening to the rain on stormy nights. Sure, I can’t help but feel a certain sense of doom when my condition begins to slide, as it has many times over the years, but I’ve resolved to adhere to my favorite mantra: If I’m going down, I’m going to enjoy myself along the way.
A final note: Last week the MECFS community lost Lara George Henderson. I know very little about her or the circumstances of her death. But regardless of whether she died from an MECFS-related complication or something else, her passing is a reminder, at least to me, that people can and do die from this disease. I know Lara was very active in the MECFS community, and that’s all I need to know to say that the world has lost someone special. We were acquaintances on social media, but I didn’t have much interaction with her, the last Facebook message I have from her was urging me to get involved with MEAction. She obviously had a good heart and was passionate about our cause and for that I am so grateful. We need more people like her.
Thanks for reading!
31 thoughts on “How to do the October Slide”
I agree with both subfloor and new construction. I had a special building made out of drywall and metal studs to avoid mold. It was built on a cement pad inside of a bigger metal warehouse type building. In the desert 14 miles from the closest town. After 5 years of living inside of it I have finally come to the conclusion I react to it. The reactions compound over time until I am pretty much bed ridden like you are. Only thing it could be is drywall and paint which I put on the drywall to prevent it from outgassing. And the house I lived in when I originally got sick was built above the ground with a crawl space and wood flooring. The crawl space had mold growing under the kitchen which flooded one time in the past. I stripped the wood floor in the kitchen and there was tons of mold underneath that also. The difficulty with mold is that what you see can many times be just the tip of the iceberg. Many are into “extreme avoidance” I am into common sense avoidance. I’ve done best living outside which isn’t realistic for most especially when your bed ridden and have little in the way of financial resources. I’ve moved into homes (actually a home rented) that was only a few years old and stayed sick. So that’s no guarantee but maybe your best bet? Maybe not? I have read plenty of horror stories of new homes that leaked and molded. At the time I didn’t know about the gluten sensitivity. Lots of overwhelming symptoms have subsided since I quit eating gluten 6 years ago. I wonder if the october increase in illness isn’t due to the fact that people usually have to close up their houses and run the heat? When I slept outside I always slept with a hooded sweatshirt and lots of heavy blanket’s or a warm sleeping bag. Maybe try keeping the double door open at night and keep air moving through your place? I know it sounds unreasonable and you might freeze your ass off but you would minimize your exposure to mold and construction materials. There are so many variables, you might be doing one thing right but not think it helps because your doing something else wrong like I was the first 14 years ignoring food sensitivities. I’m now focusing on gluten free foods that are high in nutrients and low in calories. Lots of vegetables, cauliflower, cabbage, and fruit non-gluten grains, and a lot less meat. Theory being that I am suffering from a deficiency of some type from all the years of poor absorption in my gut. Trying to make up for that. It seems to be helping also.
Hi Robert! Wow, that’s an intense story. I’m sure there’s a certain role that chemicals and mold plays into my illness but I don’t think it’s driving it. And even if I️t were I just don’t have the physical ability or means to do much avoidance. I’m kind of stuck living where I live; I have no idea where else I would go that would be better. I live in a very dry place so I don’t know how much better I️t gets. I agree that the guy also plays a big role. I just wish I could connect all the dots.
I hope you feel better and can handle lights and sounds again soon!
Thanks for this post. Maybe I’m experiencing a bit of an October slide as well. I haven’t heard that one yet. Even if it isn’t true, at least it makes for the bond that carries us when we realize we aren’t alone. I’m sorry for your slide and envious of your doors to the outside. That’s a beautiful way to still experience the elusive “outdoors.”
And thank you for mentioning Lara. Her death has hit me really hard. She was passionate and opinionated and dedicated to MECFS awareness. She will be missed by many, including me.
Hi Jes! Thanks for your words. We are definitely bonded, October Slide or not.
Thanks for this, and all your blogs Jamison. I have ME and usually get sicker Oct-Jan – reading this piece realize I am not alone. Hope you start to pick up again soon. Glad you have those doors!
Thanks Henry! You too!
I too worsen when the weather changes to cold. My aches become much more pronounced, and my SAD comes roaring in (and yes, they are two different things). I’m sorry you are suffering. I hope you find some relief.
To tick “like” to your situation feels callous. I so admire your courage and persistence and I admire the way you write about it. Perhaps one day you will come out of this and become the world’s next great writer. I hope you track the cause of your slide and are able to do something about it. I wish you well. Maggie
Hi Maggie! Thanks for your kind words. And I never take a “like” as a bad thing.
So Jamison… I had this dream about you this morning! No… not that kind of dream (I am way too old and too sick for you anyway). I probably shouldn’t try to read your blog when I am half awake/go back to sleep and am still under the influence of drugs that warn me not to handle equipment, drive or drink alcohol. Anyway the dream… I saw you in your bed like in the picture with the doors open only it was dark and quiet with the Simon and Garfunkle song plating somewhere and suddenly the sun rose. The song stopped. I know this is getting corny. The sun rose and it was warm and shining on your face. Not irritating like, but nice and comforting. Then you got up and walked out of those doors with your dog. I dont even think you have one. But you felt good and had nice rosey cheeks and muscles and you were ready and more importantly able to go for a day hike. You said come on let’s go to me but I was too tired and in too much pain to go. But I was happy for you.
I always read your blogs. I don’t always comment. Concentration for me is now very difficult and frustrating. But I wanted to share that with you and also to say wow I too am in a downward spin with fatigue/pain/dizzy right now. Also I was diagnosed in September last year with FM/MECFS, was forced to leave my carrer in October last year, had viruses in October and Nov of 2015 with persistent fevers which is when everything started. Sound is my enemy right now. I can tolerate low light like a cloudy day. I have a major headache and pain mostly in my neck back shoulders arms hips hands and knees. Would have been easier to list what dosent hurt. Tinitus is non stop. Shew this has just about worn me out. I appreciate your blog. I hope you appreciate my reply. You are not alone. I am sure you know that. Take care buddy. – Nikki from Chincoteague Island VA. (Missing Paramedic/Firefighter/911 Dipatcher)
Hey Nikki. Thanks! I do appreciate your comments, so much! And I’m so thankful you can read my blog. I️t means a lot to me. Keeps me going.
I agree that being able to get a peek of outdoors makes a difference-raises the spirits. I look out my window at the garden and see the breeze moving through the leaves and feel a bit more alive.
I’m in a bad crash, but that’s because I choose to show the film Unrest to my health group which I’ve been, ironically too sick to attend for a while. I know I overextended myself, but watching friends all of a sudden get it, even in a small way, was worth it (but I am desperately paying for it).
Sending good thoughts your way!
Thanks Jule! Oh That’s so cool you showed the film to your group. I️ still need to watch the full film.
I have been very sluggish – since this Fall started. Honestly, after 28 years this week, I can’t see any patterns that are of any use. I just know that if I overdo it, I pay – and I have to overdo it a bit now, because I’m tasked with a part of settling my parents’ estate that only I can do. I’m getting there, but it is very hard to be coherent and do tax things with our kind of brain.
I’d worry about the husband, as he is very sluggish lately, too, but he still goes for 20-mile bike rides once or twice a week with a friend, so I don’t think he’s finally caught this from me. I thought we werre just getting old.
Hope it’s a short excursion backward, and not something extended – and that the medical researchers get something going one of these days that actually works for you and me. One must hope.
Hi Alicia. The cognitive issues are so frustrating. My memory is horrible. I️ forget the names of people I️ see everyday haha.
Oh, good – I’m sick, not senile. Chronic illness I can live with, but the fear that it is advancing dementia is very difficult to keep pushing down.
I’m sorry you’re feeling worse, and I really hope it’s a short term thing. That’s interesting if depressing about the timing. I also originally got sick in November, and tend to have my worst crashes in the late fall to early spring (although there was the horrid walking pneumonia incident that began in May and ran all summer one year). Even before I became acutely ill I developed chemical sensitivities that came on in the winter and would get better in the summer and worse in the winter in subsequent years. I’ve been getting worse the past couple of weeks myself, which I thought was from overdoing it but probably also has something to do with it being November.
Mold has only recently come onto my radar but I definitely had problems with greater exposure to chemicals and vitamin D deficiency in the winter. I also discovered that I have a “yeast overgrowth” which noticeably waxes and wanes under different conditions–there are days when I experience a “bloom” and go around sneezing and itchy. Interestingly, I have a cat with a chronic Feline Herpes Virus infection and she gets worse on the same days I do and also gets worse in the winter and better in the summer.
None of that is really an answer, but more a confirmation that there’s something about the late fall/winter months that makes people, including cats, sicker. I am becoming ever more paranoid about the yeast, though.
I️ feel ya, there are so many things to be to be paranoid about I️t seems. Enough to make you go mad, especially the mold stuff.
Suck! Awesome double doors though.
In the Bay Area I slid in November. In Tahoe it was October and sometimes as early as September. Pretty much every major downturn has been during those months. I don’t have any complicated theories. It just seems to be whenever the weather turns that year. There’s one in the spring usually too, not as bad.
Thanks Emily! So frustrating. A friend just suggested it might be because our metabolism slows in the winter. Who knows
I’ve always referred to it as my season change crash. This year it’s been all over the place. Know you’re not alone.
My personal theory is that sudden decreases in barometric pressure aggravate symptoms. In subtropical or dry climates (much of the continental United States), low pressure systems are more common in winter months. Winter storms and accompanying low pressure frequently start in October or November, resulting in the slide.
I moved to a tropical climate to avoid winter storms. Now, winters are pretty good. However, my symptoms now get worse in the summers, especially August and September, which are peak hurricane season. Hurricanes = extraordinary low pressure.
Perhaps low pressure causes changes in blood oxygen content, which might cause a normal person to get a headache, but will cause us much more substantial pain, fatigue, etc.
I haven’t figured out what to do about it.
I also get worse during low barometric pressure and oncoming storms. Hadn’t connected that directly with the seasons but there’s a certain kind of gray cloudy day that always makes me massively worse and there are certainly more of them in the cold months.
I notice this too! Whenever it rains or there’s a dramatic change in temp my body is not happy. Although I️t never seems to be happy, just variations of miserable.
Yep, totally hear ya! What’s interesting to me is that my cat with the chronic FHV also gets worse under these circumstances.
Before I got sick, I was a certified scuba diver. I learned all about how pressure change under water can cause big problems, such as nitrogen buildup in the bloodstream, if not managed properly.
Since we are more sensitive than normal people to pretty much everything (light, noise, etc), I wonder if we are also much more sensitive to pressure change.
Now if only I could control the weather…
J it is always a pleasure to read your post and your attitude is as always, Amazing. I thank you for allowing me to see life from another perspective and I send you love & light through the darker months 💖🌟
PS Any Australians out there? Do you all slide in May and April? Something I’ve wondered..,