Damn. I knew I shouldn't have announced how good I was feeling. I felt pretty yucky yesterday, getting worse and worse as the day wore on. I practically had to chain myself to my laptop to get a little work done because I was having so much trouble focusing on my current work project. In the afternoon and evening, the darkness began to creep into my mind and emotions. By 8:30 pm, I was feeling so depressed and forlorn that I went to bed early just so that the day would finally end.
But it didn't end. Despite the half-Ambien I took, sleep eluded me. My mind got caught in an obsessive cycle. This happens to me sometimes with a crash. It's worse than any physical pain or discomfort. My brain grabs hold of some tiny dark feeling and obsesses over it until it spirals out of control. In this state, anything can get me going - something my mom said on the phone, some real or imagined slight from my husband - and my mind grabs it like a dog with a chew toy until it seems to take over my whole being. I finally took the other half an Ambien and somehow got to sleep eventually.
Am I crazy? Am I losing my mind? That's how it feels. Yesterday morning, I was filled with peace and gratitude, enjoying the gorgeous weather and feeling satisfied with my life. Twelve hours later, I was a basket case, thinking that my life was falling apart. My husband came home from golfing at about 9 pm, and I pretended to be asleep just because I didn't want to subject him to my darkness. He loves to golf and always comes home on top of the world, and I didn't want to ruin his good mood or, even worse, take out my dark feelings on him.
What's wrong with me? I know, somewhere in the rational side of my mind, that all of this is a biochemical thing, the result of CFIDS-influenced hormonal shifts in my brain. This never happened to me before CFIDS and now it only accompanies other crash symptoms in a predictable pattern. Right? Oh, someone out there, please tell me this happens to you, too, so I'll know I'm not losing my mind.
OK. I'm going to try to help myself. I've made arrangements to meet my closest friend for lunch, so I can try to get out of the house and out of my own head for awhile. First, I'm going back to bed to try to get some more sleep. It's the only thing that will help me pull out of this hole.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Yes! It happens to me too!! Sometimes even in the wrong order (depression happens a few hours before the crash is felt physically). Nothing can convince me that I'm every going to get better, or feel ok for more than a few hours. My mind doesn't pick on one thing, it starts with one, then finds 10000000 other things that show how shitty my life is.
ReplyDeleteI tell my DH that I just have to be sad right now, cry, write everything out (then sometimes burn it!), and keep telling myself that it's ok to be upset, that emotions come and go, and try to drop that storyline that escalates everything. Sleep is good ;).
This too, will change. This too, will change... Hang in there!
THANK YOU!!! Reading your comments sent me into another spasm of tears...but in a good way! I sometimes get the depression before the crash, too. Thanks for sharing your story and reassuring me that I'm not losing my mind.
ReplyDeleteSue
YES! Mood swings and emotional lability are part of CFS. Sometimes my clue to an impending crash is a severe, sudden case of crankies. Sometimes the blackness sets in after a few days of increased pain, etc.
ReplyDeleteFor relief, I try and detach from the emotions. I remind myself that this is the ILLNESS and not ME. I also treat myself gently; your plan of lunch with a friend is an excellent one.
And here is a quote I love: "When you feel like you have reached the end of your rope, tie a knot and hang on."
((((Hugs)))) you're not going crazy, but I understand that feeling all too well.
ReplyDeleteAre you getting enough sunlight during the day? The "creepy crawlies" hit me in the evening, and I can feel anything from mild depression to full-blown panic attacks.
And seriously, if I can't sleep, I flip out. Ambien CR has been a Godsend (regular ambien stopped working for me). Anxiety/OCD is not a fun place to be while exhausted and having insomnia.
I find that listening to my MP3 player, reading a good book, or even playing soduku can help me feel better. Even watching my fish can relax me enough to stop the anxiety.
Hang in there. You are so totally not alone.
This happens to me to all the time.. Every week I change in mood in a pattern matching the system. My thought allways go to suicide..because I dont want to live with this emotianal pain.. and feeling like I am something else than a humanbeeing. But Sue.. I learn that its just the emotions that attack .. your thougt follows the emotions. So try not to value your feeling, describe it but without judging your emotions. How does it feel in your body, head etc. It will pass and this is a part of the sickness that I think you can effect the duration of by how your react.
ReplyDeleteI also have the same kind of brainfogs as you. But I noticed whats wrong accept wordretriavel.. its like you have are not in the same level of precense in your mind. Its like your brain lost a level of awareness but it can still function. Its hard to explain but I think you can do it with a fictivestage. You are the director over the play and the actors are your thougts, emotions etc and the audience watch and review the result, all differents parts of your brain. Now in an ordinary mind everything and are connected to each part of the stage works but in CFS you can have a strange wall between for example the director and the audience. Still the actors know what to do.. But you are not aware of the connection between the director and the actors. Usually you can give you emotion and thougt orders ..you still do.. but you are not aware about the process in the same way as you were. Hmm this wasnt a easy way to explain it.. but maybe you recognice something.
ReplyDeleteHi Sue,
ReplyDeleteThis post is just so typical of what we all go through when we suffer with this disease. I hope you don't mind, but I used it as a post on my site today...I did link back to you. You can see the post at
http://livingwithcfs.wordpress.com/2007/05/23/when-chronic-fatigue-syndrome-brings-you-down-its-sometimes-so-hard-to-get-back-up-again/
Thanks for sharing your experiences. It lets us all know that we are not alone in our ups and downs.
Catherine
Sue, I can really relate to your experiences here--thanks so much for sharing. It's easy for me to get really obsessive about things like my boyfriend's tone of voice or lack of perfection : ) in certain areas. The worse I'm doing physically, the more isolated I get (have to be, because I don't have energy to be out and about) and then I get obsessive or weepy. I don't recall being this way before CFIDS, so I suspect it's connected, if not with the physical changes, then with the emotional ramifications of losing the ability to LIVE in the way I want (or both).
ReplyDeleteCatherine -
ReplyDeleteThanks for posting my entry on your blog. I've visited your site a couple of times and have liked it - just haven't had the time to register and leave comments yet. Thanks!
Jennifer -
Yes! That's it exactly. The isolation can really get to you, and all those negative emotions just build on each other. Even though I just wrote about it, I did it again last night when I started to feel bad - making my poor husband wonder what he'd done wrong! It's so hard to break this destructive cycle, but I'll keep trying!
Sue
I got mood swings so badly with my last relapse I thought I was going nuts....acutely depressed and suicidal. I managed to be so emotional and out of character that I successfully ruined a relationship, as I push people away big time when I'm really down with this....
ReplyDeleteI managed to do it so well that my ex didn't even care that I had been suicidal when I'd been verbally cruel to him but hey..that's life eh. Life with M.E. I hate this illness and I hate the lability which, in the worst moments, is so bad I lose all sense of objectivity.
I'm such a basket case and feel so awful it's hard to describe..but it's comforting to know I'm not the only one, I'm part of an M.E. community and they have the same problems.
I miss the me I used to be before I ever had M.E. But I wish people could understand in some way ... I don't mean to be so fragile and emotional but my body won't have it. I just want my life back...and the person I was once upon a time.
Clare -
ReplyDeleteThanks for taking the time to comment. I'm sorry you've been through such difficult times. It is very, very difficult for me to admit that this illness can cause such emotional (and irrational) surges. There's a part of me that feels like it's a cop-out to blame CFIDS, that I should be able to recognize and control these episodes - even though I know it's a physical, biochemical thing. I am very fortunate to feel pretty decent most of the time (emotionally). I also have low blood sugar, like may people with CFIDS, and getting too hungry can make me lash out at those around me. I realized just recently that I need to ask for my husband's help in recognizing these signs, since I often don't realize what's happening. It's frustrating to feel like Dr. Jekyll and Mrs. Hyde!
Sue
Sue - I'm 24, and I contracted
ReplyDeleteCFS when I was 22. I can't tell
you how much you hit it on the
spot for me: the complete
inability to direct one's own
emotions. I was a very reserved
guy before this, very stoical,
sort of ironic. I spent months
and months, like many CFS
patients, blaming myself for
the symptoms, but then I
finally acknowledged that nothing
I could say or think to myself
would change the mood swings, the
lability, the inability to focus,
the severe cognitive dysfunction that only other CFS patients seem
to understand fully. What's esp.
difficult to me, and I don't know
about other people, is convincing myself I'm doing the right thing
(recently breaking up a dysfunctional friendship) when my
emotions change so drastically all of a sudden. I can move one minute
from hating the person involved with this intensity I don't myself understand, and loving the person the next hour more than anything else. This disease is so very weird. I don't know about other
folks, but I'd much rather have
physical pain and fatigue than
cognitive dysfunction of any kind. Well, I always want to end on a good note, and I want to tell everybody that I believe a cure is a lot closer than people think, and I know for a fact that nearly all, if not all, of the symptoms are entirely reversible, because, like you probably, I have days that are as clear as a summer sky. But, until modern medicine cinches it, just know you're not alone.
- Sam
Thanks for writing, Sam. I hope you get some improvement in your symptoms soon.
ReplyDeleteSue
ou are not alone Sue.IOt happens to me fairly often. Mind-racing. failing to sleep. Worst of all for me is that I need provigil/Modafinil in the morning in order to "wake up". Oherwise, I experience excessive sleepiness in the morning and cant do any work. My solution is Christian and allopathic. Go to www.christianhealingmin.org and to http://www.rbc.org/bible-study/discovery-series/bookletDetail.aspx?id=48112. Also try this Booklet and then try to Meditate. But I still use my sertraline too and helps with the CFS Pain as well
ReplyDeleteHi Sue. Thanks for the post. I was searching on google for 'depression obsession' and came across your post. Would you believe it that I didn't even know that all of it was a documented illness. I've been feeling like what you've written and I can totally relate to it.
ReplyDeleteI'm probably posting my comment after a long time of when this post was made :) but I wanted to thank you for the awareness and the nice blog =) i hope everyone with this illness gets better- I miss my old self so much that I can't tell you =( It's not that my life is a hell or anything. I can live in any condition with dignity I guess but the feeling of 'old me' was just so better =) take care!
ive recently started feeling this way i dont even know if i have this but my obsession start from one thing and jump to another from day to day. Im scared ive always been happy go lucky and dont know how i got this way.i have those dark thoughts but i know i would nvr act on them so why do i think of it its so dumb. Is there any help out there and will it go away? I need some kind of reassurance or positive out look.
ReplyDeleteHi, Matt -
ReplyDeleteSorry to hear you are suffering so much right now. You should try to find a counselor or therapist who specializes in chronic illness. Maybe start with your regular doctor and ask if he or she can recommend someone or ask others with chronic illness in your area for recommendations. Just make sure it's someone who knows what ME/CFS is. This really helped me a lot in the early days of CFS when I was feeling this way.
Good luck -
Sue
Normally I manage my CFS but now been diagnosed ( after a spell in hospital over Christmas)with costochronditis and find I am sleeping all the time ( shame as Im up at 6.30 tomorrow to go back to work) I am feeling really low and can see no end to how I feel at minute. I just feel stupid all the time
ReplyDeleteI am so sorry to hear you are going through such a difficult time right now. I think that all of us have been where you are, at one time or another.
DeleteThings WILL get better.
I don't know anything at all about costochronditis, but I imagine there are treatments to try for that.
As for CFS, there are lots and lots of treatments that can improve your overall condition and your quality of life. Here are some blog posts that might be helpful (keeping in mind that I don't know what you've tried yet):
http://livewithcfs.blogspot.com/2009/09/treating-cfs-sleep-dysfunction.html
http://livewithcfs.blogspot.com/2010/02/orthostatic-intolerance-and-cfs.html
http://livewithcfs.blogspot.com/2010/02/update-on-my-low-dose-naltrexone.html
http://livewithcfs.blogspot.com/2012/11/switching-to-long-acting-beta-blockers.html
http://livewithcfs.blogspot.com/2012/01/treating-mecfs-with-immunovir.html
These are the treatments that have helped me the most so perhaps some of them can help you, too.
And, please remember, you are not alone! There are literally millions of us, all over the world, dealing with the same things you are. Please feel free to stop by the blog and leave a comment anytime you need some support, have a question, or just want to "talk" with people who understand!
Sue
Thank you for this, I have a low grade brain tumour and what you have all described is what I am experiencing now. Mood swings, tearful explosions if someone doesn't send me a tweet etc, 'Awful-itis' and generally feeling calm & rational, then next minute *Bam* I am feeling both anxious then angry then I don't know what! Will be seeing my doctor tomorrow but again thank you for describing your symptoms.
ReplyDeleteWith me I think, in part it's the stress of the last few years catching up. I had radiotherapy this year as well, My condition also forced me to take early retirement after 32 years in nursing, so am probably now starting to grieve properly for that.
It has helped me clarify mine. Hope all is well with you XXXX