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Hi my name is Angie and I've been a member since June 2007 but have never written in my journal. I just read …
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Kearsten 
12:27am, September 27, 2009
I just wish I could do anything. My mind spends all day thinking of all the things I would like to be doing but my body takes over and makes me sleep. I look at pictures friends send me of all their great adventures and I cannot even keep the house clean. This is not a pity party but I am so frustrated with CFS. Summer is almost here and for those who know anything about Washington, we only get 3 months of good sunshine so it is vital to get out in it. I want to clean the house and not be in bed for a week afterwards. I want to go camping and actually leave my lawn chair. I want to go out and meet friends for dinner. I want to have enough energy to volunteer at the kid’s school. I want to do more than sleep all day. The other day I saw a mother's day commercial for some gift of sorts and started crying because the voice over talked about giving your kids everything and I feel I have nothing sometime. Yes I am physically here for them but not mentally. I cannot ride bikes with them, run with them, be awake long enough to anything with them. Everyday is the same...Sleep, sleep, take them to school, sleep, sleep, make dinner and go to bed to sleep for the night. All they do is see me in bed or lying on the couch. This is not the example I want to lead. We all have our occasional good days and when those come along all I want to do is make up for all the down time. Of course then doing too much with ends up with me in bed again! Then there are times I feel guilty for having a good day. It is as if I should feel lousy all the time and having a good day means I must not really be sick. I am afraid to run into people I know on a good day because there is always the look of "you don't seem sick"...Little did they know I just spent 3 days in bed in order to get out for the hour I ran into them. I do not expect people to understand CFS but they do need to understand I have my days, good and bad. I just wish all of this would go away...
UPDATED GOALS
Clean my house
Progress 0%
Encouragements: 3
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ive been where you are and understand its like a roller coaster and you just cant stop riding.the only thing is make good days better and be glad to have them. thats all any of us can really do is make good days special to your family and offer our love and understanding here.. I send you freindship and understanding and blessings!!!!
smlngclds
Your not alone in all this Kearsten,i have 2 girls and am constantly on a guilt trip because i cant be the mom i once was,but i do know in my heart that they still love me for who i am and not what this illness has made me.If you ever need to vent ,or a shoulder to cry on i'm here,JUST HOLLER...LOL xoxox
mandy4
I can't imagine what this is like for you with kids..i didn't have any when I got sick and CFS is the reason why I dont have any kids now ..I'm so sorry you are going through this and I hope you will have a good day soon...And don't feel guilty if you see someone on that day cuz thye are gonna think whatever they want to and you cna't change that...just enjoy it and not let them bother you !!!!HugggssssssssssssDeb
newfieneedingsupport
I can't imagine having CFC, but I sure do know how you feel!! Whith all of my healt problems and the fact I want to be out doing a heck of alot more. And how people look at me when I pull into a handicapped parking space. I have the handdicapped licence plates. I don't look handicapped on the out side. And when I went to my 20th high school reunion everyone was asking me what I did for a living. That was so hard, I just told them I was a stay at home mom or a homemaker. And you right we have a good day or then we pay for it. But darn it we still have our fun times to. It might not be as often but we do. So we have to just enjoy them when we get them. And not let other people get to us. Your friend and a shoulder to lean on if needed Traci!!!!!
pepsiaddict77
Kearsten, I told you that I went back to my doctor about my CFS. She put me on the medication called “Provigil.” I am taking 50mg per day, and, I have to say that it seems to be helping. It doesn’t give me the jitters like some of the other medications have in the past, and, I actually can tell a difference in how much more alert I feel. The medication has been being given to pilots when they have to fly for long trips to keep them alert. Why don’t you ask your doctor about it, and, see what he or she says? It’s worth a try. Let me know. I will continue to be praying for you. Jami
scareddakota
Provigil is a medication you could ask your doctor about, as scareddakota said, it may work for you. Everybody is different with the side effects. It's worth a shot. It helpful in the energy department and those that it works for are very thankful for it. It's worth talking to your doc. about.
I totally understand what you just wrote. I'm in the same position right now. I was watching people walk down the street the other day and started crying. I thought to myself " I may never walk to the corner store again, I may never go the boardwalk again, I may never.....until I cried. THEN I slapped myself back into reality.
We want to do things so badly...fact is, on the days we can, we should. Phooey on people we run into and don't understand that it's a "good" day, and will cost us three days in bed. Phooey on all of them. Can we learn to just look inside ourselves, it's still US in there. WE haven't changed, our illness has stolen us from the inside out. Our wants and needs have changed, but it's the illness speaking.
Keartsten, we need to pray and ask God for strenght to accept this disability...it's a really tough one.Many AIDS patient's have a better quality of life than we do. These dear people have meds, and can work, and socialize...and their quality of life is better than ours. It's really HARD to accept that we are not in any form of contol over this.
I hear you, I feel your pain, I understand, and I am praying for all of us, that God will give us strength and grace....and take the bitterness away....it's so hard....so very hard.....
DarlaC