Ditto.......................................

My tree is up too, took me 3 days, 1 to fiddle with it to make it resemble anything remotely like a tree, 1 to put the lights on and 1 to decorate it with tinsel and baubles. It looks lovely and am so glad I persisted with it.

I like you come here and read the posts but very rarely comment on them - my reason is because right now I am just finding it hard to have anything positive to say. So am following my mums advice from my childhood - If you have nothing nice to say then say nothing at all. (not that I have bad things to say but finding it hard to offer hope right now).

Like you Serce I try really hard to have a positive attitude but sometimes it gets real hard to keep it up. I am fortunate to have 2 sons still at home, they do provide me with a bit of company when they can, fit me in around work, uni and all their social engagements. When people are around I wear my mask, my everything is ok, I am getting on ok type of facade when in truth that is the complete opposite of how I really feel deep down inside.

When I feel like this I just remind myself that it will be short lived, eventually I will get back to feeling more positive and more hopeful.

Peace to you
Jen

Serce you put into words what we all feel at one time or another. I think the holidays are especially hard on us. We can't do what we used to do and that makes us sad and angry at this evil illness.

Friends sent us a small potted cypress tree that came with lights and ornaments. That's our tree this year. I had to go through the ornament boxes looking for something and it made me so sad. I saw all the old familiar ornaments. Some from my childhood and many that my kids made or ones that we bought on trips. Or that represented schools the kids have gone to.

And everyone's favorite.. an angel (we think) with a strange face and my son Tim's picture on it. He was about 5 and was still called Timmy.

You described very well how healthy people touch our lives and then go back to the real world. They don't know what we want or need so we have to ask. And it feels like we are always asking. We fear they'll see us as needy or high maintenance.

I've become friends with a woman at church who lost her son in a fluke accident. I have never lost a child but as a mom I can imagine what she is going through. She needs someone and everyone is so busy. I'm helping her just by being there for her. And she is helping me by letting me help her.

After 14 years you'd think I'd be used to this but I'm not. I don't want to get used to something so awful. I want to put up a real Christmas tree. I want to bake cookies. I want to go to the mall and fight the crowd.

It feels like I keep losing pieces of me. I can't cook. I can't bake. I can't clean the house. I can't take my dogs for a friggin' walk. Two of my kids will be here next week and they will do all the cooking. I'm grateful that they do it but I feel very sad that they have to do it.

I was already sick when we moved to Vermont. That made it almost impossible to make friends. My family - brother and his family and my mom- live in Pittsburgh. Our kids live in New Jersey, Washington, D.C., and Lawrence, KS. They have busy lives.

We have lives barely. I push myself every Sunday to go to church. I am surrounded by people who care about me and love me. I love to watch one little boy running up the aisle and down the aisle. His grandma is a deacon so she's on the altar but he just sees grandma. He's quiet.

I can't read books. I use a Kindle. I'm very grateful that Kindle exists but there is nothing like the feel of a real book. I see the books on bookcases many of them unread and I'm sad.

My "severe cognitive impairment" is too much like Alzheimer's. It scares me. My dad had Alzheimer's. Things disappear and then reappear in the strangest places.

Everyone tells me how strong I am. And they're right I am strong but there are times when I just don't want to be strong. I want to be a wuss and whine. Despite my best efforts, the strong me always comes back. It always will because my strength comes from God. It's the Footprints thing. My guess is there is one set of footprints most of the time.

That's one thing I can count on. He will always be there to give me strength. But it sure would be nice if my brother called and asked me how I'm doing. Or my husband held me in his arms and told me he loved me.

Instead God gave me two dogs who adore me. They say I love you in so many ways.

Amen to all your post. Vicki, Jenn1fer, Serce...
I am lonely. Maybe I am needy or maybe I am just in need. The reason we are so isolated is because we have no energy to change it. The reason we are so isolated is because people in real time move so swiftly back into the fast lanes of their lives and we are still right here. Wishing for people to call, touch base, hold our hand and share a bit of time with us. Not very realistic....being ill for so long has taught me that. I thought I had more or less made peace with it....
I could not have put it better in words like you Serce. Allot of us feel the same things you are feeling. Some days I just sit and cry & then remember stop crying cuz it only causes more flare ups. Each day we just do the best we can. Nope we can't ever plan a day...Which makes me upset but it is what it is. I've been sick for 6 years or longer. I still pray every day that tomorrow will be better. I get aggravated upset anger sad the whole thing. Thank God we have each other here on DS. Something or someone lead us to this support group. For me it is a blessing. It's not good to keep all those feelings inside. We are here for each other; not just for the good times but the hard difficult times too. Big Hug Grace

It is neither a fault nor an imperfection. Needs are basic. It's ok to need.
I'm lonely too. I have a hard time staying positive. But at the same time, takikng some time to cry, get mad, vent, helps to move to a more positive moment, because you're working through instead of stuffing it down.
For the family you wish to hear from....instead of waiting for their contact, contact them. The beauty of this is that it's when you are up to it. Need to borrow some words? How about, "I'd love to see you. When is good for you." It's all nice and open ended. You can even add something about what time of day is best for you. I have gone so far as to tell my friend before she comes over that if I need to go lay down for a few minutes, it's not a signal to leave....that it's so I can continute the visit. Let's face it, there isn't much worth risking a crash....but a friendly visit often is.
I highly recomend seeking a free support group. I found one I'm going to try Wednesday. I plan to go if it kills me! I decided that I really need to go. If I have to I'll sleep afterwards.

We are social creatures by nature. We are in one of those places that you have to experience it to understand. However, I do not wish it on anyone. It took me quite some time to embrace the solitude I have been given. So many ppl in the fast lane want a break or a moment of peace. We have been given the gift of time. I may not always know what to do with it, so, I consider myself a student of solitude. Some days all I can do is send love and healing and pray--other times I get so excited I got dishes done without getting tired. I am still a student of learning to enjoy who I am now--guess I will see what tomorrow brings.

Thank you all for sharing your philosophies. As a relative newcomer (2 years) to chronic pain and chronic fatigue I find myself constantly in transition - grateful for life after beating cancer yet bemoaning my fate as one who will be chronically ill for the rest of my existence.

In terms of coping, I found a psychologist who specializes in chronic pain - she helped me greatly with accepting the changes within myself and managing the inevitable changes in relationships with others. If you have insurance that will cover the cost and can find a pain clinic with a psychologist on staff I would highly recommend it - even if you have chronic fatigue only and not chronic pain many of the issues are the same.

Hugs to all.........

The radio station I listen to, KTIS 98.5fm - MN, always talks about Prayer works. People write requests for prayer & you can log on anytime to pray for others. Always makes me feel better to be able to help someone else out.

http://info.onlineprayerworks.com/
Merry Christmas to one & all
.

Thank you to All who shared ---- lent their thoughts and support! We all need to be able to let our hair down......have a soft place to land. Wishing you all many blessings this season.......take care, hugs!

Yes, this is a tough time of year. So many things I want to do that I can't. I didn't put up a tree. We have a wreath in the window and I got out the nativity scene. I haven't baked any cookies or bought any gifts. We give money or gift cards. I am thankful that I have a husband who is understanding. But it is hard this time of the year.


Best wishes to all of you!
dwin