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This happens to me once in a while - fairly rarely, thank goodness. As I explained in an old blog post, A Life of Contentment with Pockets of Despair, 9 years ago (!), I am generally a very happy, upbeat person. It's not an act or an attempt to "think positive" - I really do feel happy most of the time and am generally very content with my life. I work hard, I love my family and friends, and I do my best to enjoy life, in spite of this nasty illness.
But sometimes, like this weekend and the bout of depression I wrote about in that old post, despair just hits me like a wave and knocks me down. I wonder how much of it is emotional and how much is physiological. I've noticed before that depression sometimes precedes a bad crash (hasn't happened in a while, thank goodness). This weekend, I took a long (for me) walk with my husband on Sunday morning and was in bad shape emotionally the next day. Could it have been "just" a part of a post-exertional crash? I think that would be even more depressing!
Emotionally, I am feeling overwhelmed and several things seemed to converge at once last week: our finances are super-tight (again) due mostly to our high medical expenses and college bills are growing; our extended family wants to go on an expensive vacation - a "free" trip that will end up costing us more than we can afford; my husband and I planned a solo vacation week for July because our sons no longer want to go on vacation with us - this new development has caused us both great pain; an article I wrote for a website was accepted for publication...and then they told me they no longer pay writers (also feeds into the financial pressures, of course, because I feel so guilty about not being able to contribute to our income); and, as always, ME/CFS is the ever-present storm cloud, affecting every moment of every day.
Most of the time, I am happy and content with the life I have created from this illness and I certainly recognize how fortunate I have been (though it's not just luck - it's taken a lot of hard work) to find treatments that have helped me to feel better and be more active. Sometimes, though, living in a prison of restrictions and limits gets to me. I just want to be able to enjoy a glass of wine with my husband, have a dessert when we go out to dinner, hike for as long as I want without constantly watching both the clock and my heart rate monitor. I feel like a ticking time bomb when I am out. My life is made up of a tightly monitored routine, with restrictions everywhere I turn: don't eat that, don't drink that, rest now, watch your heart rate, etc. I recognize intellectually that it is those very limits that allow me to live more freely than many people with ME/CFS - I feel better because I am so disciplined about sticking with my routine and my restrictions. But some days, I just want to throw it all out the window and be free!
Well, I feel a little better just having someone to talk to (assuming anyone is reading this!). I am just slightly better today - haven't cried yet this morning, anyway (oh shoot - never mind that last part).
I would love to hear from all of you - do you experience these sudden bouts of depression after periods of coping well? Does it seem to be linked with a physical crash for you? How do you maintain a healthy state of mind in the face of a life filled with restrictions?
I know I am usually the one feeling happy and cheerful and encouraging others to find the joy in life...but right now, I could really use some help myself.
I often get emotional pain as a symptom of PEM.
ReplyDeleteRecent research into how paracetamol (I think its called acetaminophen in the US) works has found that it dulls both physical and emotional pain. So long term use of paracetamol for physical pain can result in emotional flattening. It therefore makes sense that the body might express physical exhaustion in either physical or emotional pain.
Fascinating, Jenni - I hadn't heard of that study.
DeleteOf course, I know that clinical depression is a physical illness (a good friend of mine suffers from it) due to biochemical imbalances. I just wondered whether these occasional bouts that sneak up on me are primarily due to physical causes or emotional - probably some of each!!
Thanks for sharing that.
I relate to your post Sue. My restrictions come not from CFS but from being a type 1 diabetic. I can't eat ANYTHING without calculating insulin/exercise/carbohydrates even mood. I also suffer from low energy but it has not been diagnosed. I have also had plummeting moods when I am fatigued by the maintenance involved, but like you, most of the time I really enjoy my life and even feel quite lucky to have a great marriage and three children who are growing into interesting adults. I do believe that those of us with chronic illnesses become more appreciative of the smaller joys in life sooner than people who can (and do) take their health for granted. It is that understanding that has allowed me to weather the gloomy times.
ReplyDeleteSo true, Cleo! I write about that a lot here - finding small joys in every day life. You are right - we definitely have a different perspective. Thanks for stopping by and taking the time to comment!
DeleteI HAVE BEEN GOING THROUGH THIS FOR 14 YRS & YES, I DO BELIEVE IT RELATES TO OVERDOING OR TO A RELAPSE! EACH YEAR I AM ABLE TO DO LESS & THIS SPRING I'M FEELING VERY OVERWHELMED & EXHAUSTED--& ANGRY!! I'M 70 & FEEL I'VE BEEN ROBBED OF MY LAST GOOD YEARS. MY LOWER BODY IS OVERWHELMED WITH ARTHRITIS, MY HEAD WITH BRAINFOG, POOR BALANCE & NOT BEING ABLE TO STAND LONG, LET ALONE WALK FAR!! WE R SENIORS ON A LOW FIXED INCOME WITH AN OLD CAR WE WON'T BE ABLE TO FIX ONE DAY & I'M REALLY MISSING BEING ABLE TO DRIVE MYSELF, SO FAR THIS YEAR. NOT CHEERING, I KNOW, BUT THESE DERESSIONS DO PASS & I ENJOY THE GOOD DAYS WHEN THEY COME! GOD BLESS YOU! BJ.
ReplyDeleteSorry to hear you are suffering, Bonnie, and have been in such bad shape for so long. Generally, in cases where ME/CFS keeps getting worse, it usually means there are untreated infections behind the scene. Have you been tested for the common viruses in ME/CFS?
DeleteMore importantly, have you ever been evaluated by a Lyme specialist? Your symptoms are classic Lyme - including the arthritis - and that would explain why you keep getting worse. Here's more info:
http://livewithcfs.blogspot.com/2014/06/why-everyone-with-mecfs-or-fm-should-be.html
Thanks so much for taking the time to leave a comment ans share your story!
Sue
I agree with Sue......if things are getting worse it is always a good idea to check in with your DR. Last year I was so fatigued I slept 12 to 16 hours a day simple A1C test it was discovered I had type 2 diabetes and f elt better in 2 weeks . I eat on a schedule ,watch my carbs and started walking . I still have terrible flares but I have more good days. Also PMR was discovered and treated. Both these illnesses are often part of the syndrome.
DeleteHi Sue. I have been living with CFS for over 25 years and I can tell you that the first sign of a 'crash' for me is the emotional part. It reminds me of when I used to have PMS...only it's like PMS on steroids. I can't get around it or dodge it. But there are coping skills I use to help contain it so I don't go totally crazy. However, the catch 22 to that is that sometimes I cannot find my way to my coping skills. Sometimes they aren't enough. And sometimes I'm just too tired to even try to cope. I find that I also get this way when an infection or virus is starting to hit me.
ReplyDeleteGlad to hear it's not just me, Sharon! As another friend was mentioning this week, sometimes you just have to let it out, experience those powerful emotions, so you can get past it and move on again.
DeleteIt was not a lovely weekend for me either, Sue. I put up a tent in the backyard here because last summer when I did that my symptoms eased up a lot, but even out there I did not feel much better. I was in there yesterday and felt ok until night hit, and then my depression and anxiety flared up.
ReplyDeleteAs soon as the line of storms passed earlier today, my inflammation seemed to die down.
Oh, yes, same here, Chris - changes in air pressure have a big effect on how I feel! Sometimes when I will be wondering WHY I am feeling awful when I didn't do anything wrong, my husband will just point out the window at a dark, stormy day. And then, it feels so much better when the storm front comes through, the pressure drops and the humidity drop again. Maybe you need to take that tent and travel further north or into the mountains, Chris!
DeleteI've noticed that when it's a nice day that turns bad quickly, so do I.
DeleteSuch and honest and heartfelt post, Sue. I've gone through everything your write about. For me, depression is set off by the relentlessness of my symptoms. There's not a day since 2001 when I haven't felt sick. That can get me down. Thankfully, it passes after a few hours (sometimes, it takes a few days) and I get on with the life I have. For you, it seems like this latest bout was brought on by a convergence of a lot of unpleasant things. Financial stresses take their toll and the change in how you'll vacation must be very hard to adjust to. I hope it passes soon. I'm glad you felt you could share it with all of us. It makes us feel less alone.
ReplyDeleteYes, Toni - my son and I were talking about exactly that today in the car - how you can cope just fine with this illness, day after day, and then one day, it just all seems like too much and you collapse emotionally. Though you are also right in that there were some triggers last week, too. It makes ME feel less alone when so many wonderful people leave comments here to tell me they feel the same way!
DeleteThe new IOM report suggests the new name of Systemic Exertion Intolerance Disease (SEID). It also identifies the 'systemic' as meaning body-wide, but more importantly notes the exertion intolerance as being physical, mental, OR emotional. Our adrenaline ducts are empty, so when the cortisol goes to drive it, it goes overboard. I think being emotionally exhausted is similar to, but different from regular depression (which certainly can also be a problem for us). I believe it works the same as our mentally & physically exhausted moments. I also believe you can be physically spent but wide awake. You can be physically OK but mentally spent (brain fog). But if you're emotionally spent, it's all three.
ReplyDeleteGood points, Perry. And it's been confirmed through many studies that our bodies' stress response is dysfunctional, so no surprise that we can't handle stress well, right?
DeleteThank you for this post, this is exactly how I feel and you have put it perfectly. I call it 'getting a little fluffy' . For me it is a sure sign of having done 'too much' ( whatever that is on any particular day) and a flare up is in progress. Like you I am mostly happy with my life but when this emotional fatigue hits me I turn into a ball of fluff and need comfort TV or talking books and quiet.....hope you are having a brighter day today xx
ReplyDeleteha ha Maya - I love that - "getting a little fluffy"! Great expression.
DeleteYes, I am doing better this week - still more tired & worn out than usual but feeling more like myself overall.
Thank you for so eloquently articulating the emotional roller coaster that I experience with this illness; something that I am exceedingly inept in conveying myself.
ReplyDeleteZeilla - thanks for the kind words and for taking the time to leave a comment. I have also often used the word rollercoaster to describe this crazy illness! It sure keeps us guessing, doesn't it?
DeleteMy anxiety goes through the roof when I am at my physical end. I think it's amazing how much a long nap helps when all I am feeling are "psychological" symptoms. Physical and emotional are very much intertwined. Take good care of your physical self when you are feeling emotional pain! You are not alone.
ReplyDeleteThat's good advice, Michelle, and thanks for taking the time to comment - it means SO much just to know I'm not alone and others feel this same way.
DeleteHi Sue,
ReplyDeleteI often feel emotionally low when I'm below baseline. I find that attributing it to changes in my brain chemistry helps to minimise it's impact and makes it easier to just patiently wait it out. I usually find that my normal cheery motivated self will return without any effort if I wait patiently without giving myself a hard time for feeling down.
I hope you feel better soon!
That is so true! It really does help to remember that these things come in waves and you will soon feel better again.
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