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...
This ME/CFS, Fibro, RA... took me down in 2005. I have learned how to moderate my life so I can get thru the days with medium pain and not crash every other day.
But I just realized, I don't have a life. I don't drive since my accident (they said I fell to sleep behind the wheel at 9am.). So once or twice a month my hubby takes me grocery shopping. Now he is out of town for 7 weeks and I have to ask my neighbor if she can take me to the store. I hate this. This is not me. I help people not the other way around.
Our wise government turned me down for SSDI (after a 5 year fight) because I tried working part time 12 hrs a week and tottaly crashed after 2 years - so they said I can work full time I'm not disabled. They also decided that I wasn't following my drs orders - she recommended that I try acupuncture and massage - neither of which is covered under insurance. I went to the acupuncture appt 3 times and got the worst headaches - so I quit going. And the massage therapist wasn't from the drs office so I didn't think about asking for records - so the ALJ said I didn't go. Rhuemy also wanted me to do warm water therapy and physical therapy. After 9 visits the physical therapist decided she wasn't helping me (all she wanted to do was give me excersises - I was already doing yoga so it didn't help) the ALJ again said I didn't follow thru. WTF!
So I started looking up, maybe this is good. Now I don't have to worry about someone seeing me trying to do something and reporting it to SSDI. The problem is I can't seem to get anything done. It is not that I don't want to, I just run out of gogo juice or I can't quit remember how to do it or I lose track and start a different project - so everything is a mess.
I give up. Who is going to pay me to take naps and mess up 45%of everything I do ( I have come to accept it - but who else in their right mind would) I sent a birthday card to my grandson. Wrote it out early, put it on the frig to mail after Christmas and forgot it. I finally got it mailed, then it came back in the mail last week, I missed the last digit on the house number. For Christmas I ordered some cute hats for the hrandkids, transposed the house number (now the package is lost in the mail.)
I have worked really hard at getting healthy over the last 8 years. I grind my own flour, bake bread, cook from scratch, eat nothing processed, juicing, smoothies, yoga, meditation, whole food supplements. And besides draining my retirement fund and putting my hubby and I in debt up to our are, very little seems to help. I shouldn't say that. I have gotten a lot better, but every time I get better, I start to realize I didn't know how sick I was.
Sorry for such a long post, I just needed to vent a bit. :-(
My depression is kicking in big time and the pain is increased because of the weather. Can't I just crawl under a rock and die?
I am so sick of being like this and having so many people not believe me.
(((HUGZ))) SG
But I just realized, I don't have a life. I don't drive since my accident (they said I fell to sleep behind the wheel at 9am.). So once or twice a month my hubby takes me grocery shopping. Now he is out of town for 7 weeks and I have to ask my neighbor if she can take me to the store. I hate this. This is not me. I help people not the other way around.
Our wise government turned me down for SSDI (after a 5 year fight) because I tried working part time 12 hrs a week and tottaly crashed after 2 years - so they said I can work full time I'm not disabled. They also decided that I wasn't following my drs orders - she recommended that I try acupuncture and massage - neither of which is covered under insurance. I went to the acupuncture appt 3 times and got the worst headaches - so I quit going. And the massage therapist wasn't from the drs office so I didn't think about asking for records - so the ALJ said I didn't go. Rhuemy also wanted me to do warm water therapy and physical therapy. After 9 visits the physical therapist decided she wasn't helping me (all she wanted to do was give me excersises - I was already doing yoga so it didn't help) the ALJ again said I didn't follow thru. WTF!
So I started looking up, maybe this is good. Now I don't have to worry about someone seeing me trying to do something and reporting it to SSDI. The problem is I can't seem to get anything done. It is not that I don't want to, I just run out of gogo juice or I can't quit remember how to do it or I lose track and start a different project - so everything is a mess.
I give up. Who is going to pay me to take naps and mess up 45%of everything I do ( I have come to accept it - but who else in their right mind would) I sent a birthday card to my grandson. Wrote it out early, put it on the frig to mail after Christmas and forgot it. I finally got it mailed, then it came back in the mail last week, I missed the last digit on the house number. For Christmas I ordered some cute hats for the hrandkids, transposed the house number (now the package is lost in the mail.)
I have worked really hard at getting healthy over the last 8 years. I grind my own flour, bake bread, cook from scratch, eat nothing processed, juicing, smoothies, yoga, meditation, whole food supplements. And besides draining my retirement fund and putting my hubby and I in debt up to our are, very little seems to help. I shouldn't say that. I have gotten a lot better, but every time I get better, I start to realize I didn't know how sick I was.
Sorry for such a long post, I just needed to vent a bit. :-(
My depression is kicking in big time and the pain is increased because of the weather. Can't I just crawl under a rock and die?
I am so sick of being like this and having so many people not believe me.
(((HUGZ))) SG
Don't give up, remember our emotions are like the weather, they blow through quickly. You'll feel better soon........
Good for you for venting and not letting negative emotions eat away at you. Just letting it out helps so much! Your husband will be home soon, you can make it till then. Yes, seven weeks seems like forever when everyday is a crawl.....but better than 7 months....right? See, there's always a positive side.
2 years ago my husband had to do this intense over-time project that had him gone round the clock for almost 3 months. I had to have family take me to do all the shopping and appts. and even come and roll my trash bins in and out on trash day. It was brutally hard but I survived it, and really appreciate now how much my husband does to make my life easier. You'll survive it too!
Hugs
I took a nap now I feel a bit better.
I will never give up, sometimes I just wonder what would happen if I did.
1981 it's nice to know I'm not alone. But I keep thinking I should be able to stop these dumb mistakes. Why do they happen? I could swear I do it right and then....
What I've learned is when I feel depressed, to just be depressed. The key is to not be there for too long. I remember last year, I was depressed and I didn't even realize how bad it was until my psychotherapist mentioned he was worried about me and had never seen me like that. Luckily, I somehow just snapped out of it, 3 months later. In hindsight, it was pretty scary.
This illness is very tough. So many ups and downs. It's frustrating when you try and do so many things to get better and you still feel like crap. Don't be so hard on yourself, you are doing the best you can. Be gentle and kind to yourself.
And to all those people that don't believe us, screw you!! You have no idea.
Glad you are feeling a bit better. Big Hugs!!
Spacegirl - I don't know why the brain seems to stop functioning. I have found the best way to avoid making mistakes is to not do things too quickly. Whenever I can, I think about the task now and then over the course of a few days, then do it. And I use my online calendar to send repeated email reminders days before things are due - water my plants, call my mother, mail a bill, birthdays, make an appt... you name it!
It really makes sense.
On page three it mentions research that had shown 'functional brains scans' werege Dr said 'if he didn't know the diagnosis, he would have thought it was a stroke victim.' Parts if our brain gets deprived of blood for too long.
They also explain the fatigue and muscle pan. Read it and see what you think.
Lymie, Thank You for the encouragement. But Social Security is done with me. I've had a lawyer for over 5yrs of this fight and my eligibility ran out last Sept. So now I need to listen even harder to hear what God's plan is for me. I thought this was it.. so we will see.
Since1981, Thank You for the reminder. I need to get my Louise Hay DVD's out and watch them daily again.