Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

1,560 Members
7,095 Posts
0 Online
Muscles & Bones
/ Chronic Fatigue Syndrome Support Group

Missing out

Courtney550
Courtney550
My fianc and I were invited to go to a friend's 25th birthday party tonight. They were going to have a cook out and then go to the bars. I urged my fianc to go because I knew he really wanted to see all of our friends.

I ended up staying home. I'm not sure if it was the best decision but I'm trying to make a conscious effort to give my nervous system a break and avoid over-stimulation and late nights. I'm working hard to establish a better sleep and wake routine so my body can achieve deep sleep and heal itself.

Also, I was tired while running simple errands earlier today and I'm pretty sure dancing at the bars would just throw me over the edge. I don't want to spend the next few days feeling exhausted and sick.

Plus, I wouldn't be drinking anyway. I haven't had a sip of alcohol in 4 months because I'm trying to taper off of my valium prescription (for anxiety/panic attacks).

I'm just feeling lonely right now. A year ago I would have been out there dancing the night away making memories with friends but here I am crying and desperately hoping that I'm making progress toward healing myself. I will find a way to fix my body. There is no way I'm going to feel like this for the rest of my life.
triunfadora
triunfadora
Courtney, I can hear the pain in what you are saying. It is really discouraging to miss out on things. I can't drink because I'm already dizzy most of the time, so that would push me over the edge. It's hard for your old friends to understand why you can't dance late into the night anymore. Heck, it's hard for you to understand, much less them. I have found that it helps to grieve it. Every loss deserves a season of grief. Of course, I don't want to grieve forever, but every time I feel the pain coming up again, I dump it out. I am a Christian, so I often imagine Jesus taking my pain into His chest, but you can use any image that works for you. The point is that the pain is flowing out and not coming back into you again. Crying may even help your symptoms because our emotional pain can be stored in our bodies. After you cry it out, you get a moment of determination in which you want to be as healthy as you can. I can see that you have had those moments where you are determined to keep trying. You're on the journey, precious Courtney. It's a journey you didn't choose, but it's the one you are on. I will pray for you. I know it hurts so much.
hollie9
hollie9
Unlike your reasonable choice, I push myself to go with my husband to events like this and rarely miss anything. I just run on adrenaline and a bit of wine helps me keep going, I think it's the sugar in the wine.

But I do crash all the time due to this. Even during a crash I make myself go to the next husband/wife event, we have a busy social life. I'm always wired but tired and God knows what I say to people when out since I can't remember.

I've had this for over 20 years so I expect I'll have it for the rest of my life unless a cure is found.

Did you just get sick less that one year ago? For me, I thought I could not live with this at first and thought I might as well commit suicide but I'm glad I didn't, life is still good.

But I do miss out on so much too...I feel your pain.
DarlaC
DarlaC
Hi Courtney!

This is such a tough topic. It's your life we're talking about here! It's about all our lives....and how they've changed since CFS/ME! We're pretty much train wrecks! Our lives DO get turned upside down. It's sad, but we all have to find our balance. And there IS a balance.

You said that you didn't want to get over-stimulated, and that you were working on getting good rest!! That's the way to get used to this illness. Pace, pace, pace!!!

I know it's hard to skip events, like you just did. I have to send my hubby off to quite a few affairs without me. It's hurtful, but I don't travel well, and I can't stay up late.....the loud noises really get to me and cause anxiety, crowds bother me....UGH! But this is common with all of us.

I chose to spend as much time resting as I can, if I want to go somewhere on a specific day, I will literally rest for two days, to get one day "out". I have to do this. If I push it, and go out two days in a row, and short myself on sleep, I will crash. FOR SURE. Then I end up with three days in bed. It's not worth it.

You will find your balance. Prayerfully, none of us will have to spend the rest of our lives like this...but for as long as we must endure these limitations.....let's follow some basic guidelines that we all know will work for us. Find the balance....don't push.....rest whenever you can.....and always use those good days to do something FUN for you. Leave the mop in the closet. Dust bunnies need company too! xoxo
Lupin1
Lupin1
You are absolutely doing the right thing! I stupidly got persuaded into going clubbing til 2am 6 years ago and think that was the start of a downhill spiral in my ME, which I have yet to recover from. Listening to your body and your needs is vital to recovery and improvement. You are doing what you need to do for yourself and that shows great strength. Getting better sleep is a great goal. I really respect your self control and wisdom!
LarkLaurie
LarkLaurie
I am so sorry you had to make that sacrifice! I hope you're feeling better a few days later. I just wanted to add my voice of support. It sucks when we miss out on fun "for our own good." As I'm sure you know, sometimes the fun is worth the price. It is disappointing when we have to make the choice to rest and heal. I wish you well as you continue to balance life and healing.