Holiday Happenings (or Lack Thereof)

[Sunfish]

okay...i'm needing to vent here for a bit (or perhaps i should say a lot...)

i'm having a super tough time with the whole holiday season. for me that includes thanksgiving, my birthday, christmas, new years, & other family birthdays all crammed in pretty close together. illness during the holidays changes things and has for me for years now. it hasn't been easy at times but i've made it through & will somehow continue to do so.

i know that a lot of the surrounding "stuff" of the holidays isn't what really matters and honestly there are some holiday trappings that i could care less about, but so many of the things that i grew up with as meaningful traditions aren't options for me at all anymore and it's just so hard.

one year i was too ill to make it to church on christmas eve after traveling home. one year i was alone in my apartment miles from family and friends on thanksgiving as i was too ill to travel. on and off i've had limitations on foods. for years i've done any shopping months in advance bit by bit, online, & with others helping me out; i pretty much only do gifts for immediate family & haven't done cards in years. when i've been able to go i've been no help in lugging the christmas tree that my family always cuts down at a farm. i haven't sung in the church choir for years. i've had to wake up before the "allowed tree time" on christmas morning to get meds in my system. i've had dinner & a movie brought to me on my birthday instead of going out. i've taken naps in the middle of gatherings. last year i couldn't help in the christmas eve cookie delivery to neighbors. and i've tried - not always successfully - to thicken my skin in regard to thoughtless (though not malintended) comments from assorted individuals in various settings. you get the idea.

and this year it's all those losses and more. there is literally nothing that i can do anymore holiday-wise that doesn't require extensive planning and orchestration b/c of my health and more things than not are simply impossible. i honestly just can't wait for the whole season to be over and i absolutely HATE feeling that way. my personality is not generally scrooge-like.

i'm sure someone will feel the need to tell me to be positive & look at all the good things in my life & all that. i have done that & continue to do so. i am thankful for my family and friends and for the message of christmas that is true to my heart and my faith. those are givens for me & without those things i hate to think where i'd be as even with them things are horribly difficult. and i'm a creative person that has figured out different ways of doing things for over ten years now and continue to do so; but creativity only goes so far.

my reality is that when it comes to the tangible traditions of the holidays there is little i can partake in. and just so many reminders of loss and limitation. i can't spend time at the piano playing christmas music, can leave the house only occassionally & with much planning, am not able to help decorate or cook, cannot eat anything, can't wrap everyone's gifts for everyone else, can't sit through a movie theater movie for the annual "family movie day", can't enjoy staying in my PJs christmas morning without packing a bag of clothes to change into since i can't get back upstairs to change, etc, etc. you obviously get the idea without my going on & on with more specifics.

we had hours of discussion & deliberation about our thanksgiving plans, i.e..would we and/or i still try to go to our family's in columbus. we figured out lots of details to try to make it doable for me...taking two cars so i could be flat on the way there, figuring out my IV set-ups, yadda yadda. knowing that it would be possible that i'd wake up the morning of unable to go. and knowing that i'd likely pay for several days after the trip. but i particularly wanted to make the effort in order to see my nana who isn't in the best of health. and then it ends up that all the planning was for naught b/c one of my cousins woke up sick and after a call to my doc (who is also a neighbor & friend) we concluded that it wasn't worth the risk of my getting sick. my mom wanted to stay with me but that would have just made me feel worse b/c i would have been messing with her thanksgiving too. so in the end i'm home by myself having a really hard time being thankful in the here and now. and yet knowing that if i had gone it would have been hard in a different way. at least here all the food wasn't around, but thanksgiving isn't meant to be spent alone.

the being alone on thanksgiving issue will hopefully not become a regular event and i'm hoping & praying that a gastric pacer may make at least some food an option for me in the future, but the reality that so many of the losses are the way the holidays are going to be going forward is just so hard. i especially miss all of the stuff including being around a variety of family, friends, & neighbors; i need my alone time but at the end of the day i'm a people person.

and then there's that whole other issue (which in truth would be another post entirely) of grieving in terms of the fact that i'll probably never have my own family to pass on traditions to; b/c of my health marriage & children aren't likely in my future.

okay. i'll get off my whining rampage now....

thanks to those who made it through my ramblings,

melissa

[taylortotmom]

Sweet Mellissa, I am so sorry. I can relate to a certain degree. Many Halloweens have been spent either in the hospital or severely ill which is heartwrenching to me as I have kids and that is a HUGE day for us. Thanksgiving- a guarantee that someone in our family will be sick- this year, we ALL had the flu- I kid you not. Autumn and Christmas have been my favorite times of year throughout my life- and now they seem jinxed.

But, to give some optimism (which I know does not help much)- I still manage to salvage what I can of the holidays. No, I can't do all the things I want. Today was hard at first. As my sick kids and I piled on the couch to watch the parade on tv, I felt sad because once again we were stuck home for the holiday. But, as the day wore on I realized there was no where else I wanted to be- and even managed to cook an elaborate meal none of us could eat because we were too sick!

I don't want to minimize your frustration or sadness, and honestly my kids and husband are my saving grace. It's hard- but I hope you are able to salvage a little of something of what makes the holidays so special. I really can't offer you anything other than some understanding, a big cyber hug, and a slice of virtual pecan pie.

One more thing- something I'm thankful for- you. Your insight and journey has helped me in more ways than you'll ever know.

Love,

Carmen

[futurehope]

"I honestly just can't wait for the whole season to be over and i absolutely HATE feeling that way. my personality is not generally scrooge-like"

Melissa,

I'm with you on this one and I can totally relate. I'm not by nature a hermit, but I now prefer it to feeling poorly and pretending I'm fine.

Holidays are just one big stress for me and that's the way it is. I would only say it on this forum, but, I can't wait for this season to be over. I'm just not capable of enjoying the intent or giving or anything else because I'm physically unable. So, unfortunately, I've become a scrooge as well. Not my intent. But true.

I understand.

[Poohbear]

I have no words of great wisdom for you but I can relate to what you said. I have spent most of my holidays alone year after year and it is very hard.

I've tried to come up with "traditions" that are doable but it's not the same and the grief is real and it is awful sometimes.

I spent my Thanksgiving in the ER (after spending 7 days in the hospital with only being home for 2) with Dr's who know nothing about this illness and who are refusing to pull an infected picc line and my main Dr is out of the country so.....Yes, I do have a bad attitude right now. I know I have things to be thankful for but at the moment it's hard to feel happy and content when everyone else is eating a plate of good food, going shopping, hanging out.....all things that you and I can't do anymore and it stinks! I wish you lived closer to me 'cause at least we could cry on each others shoulders and then watch a movie in between our nap times, medication schedules and liquid nutrition.

Honor your feelings and allow yourself to grieve your losses.

I wish I knew what more to say but I do care about you and I do hope things will improve for you!

Meagan

[Sophia3]

Melissa

I SO HEAR YOU!

I am sorry you were alone for the holidays. As was I. I am sorry you had to stay home...and are missing out on the decorating of cookies and tree hauling and such.

When you come from a small family ...and just a handful of relatives die or move away, it impacts on the holidays and makes them SADDER...My sister went OF TOWN for 3 weeks during holiday season, it stinks. (part business and part family)

I spent last thanksgiving alone...too sick to accept an invitation from a friend. Family members went out of town that year too.

Yesterday I turned a MAJOR BIRTHDAY MILESTON alone...too sick and depressed to even want to celebrate. With folks out of town, i spent lots of time on phone calls and got flowers but it is NOT THE SAME.

But the night before and last night I made a POINT to call my older friends (who are 71, 67, 65 and 60 so I would feel YOUNGER! LOL..that did help)

I can't imagine sitting in a movie theater either. Good grief and I am sorry you have all the meds and IV stuff to deal with and plan around. I feel so fatigued and ****** on my own, I can't imagine the "stuff" you have tp pack and take with you. You have had SUCH A MAJOR year of medical stuff you sound like that Digagnosis mystery show on Dis Health channel yourself.

I did hear from an old friend yesterday (I dated her dad years ago and she and her husband are a delightful couple) She invited me to dinner but I said I am recovering from surgery (easier to explain than this illness!?) so she insisted on getting my address where I live and bringing me a plate of dinner before she served to her guests! That was VERY MUCH A MOOD BRIGHTENER even though they only stayed 10 minutes! It was nice to get a couple hugs, and catch up. I hadn't seen them in 8 years. But got a plate of food out of the deal and went back to watching my DORIS DAY marathon on Turner Classic movies. and I hope to get to their home and see their 8 year old daughter who I only saw when she was born in in pictures.

I had a partial hysterectomy 2 weeks ago (have my cervix still for good reason) and woke up with sick period cramps Wed morning. 12 percent of women have monthly cycling and spotting after this type surgery. LUCKY ME!!! Add to that PMS depression, big birthday, holidays, no plans and no energy to accept plans I did get offered...even last minute as some know I can't accept or deny until "last minute".

I am very grateful for what I have and the support I have even if on the phone some days. I hate saying no to folks who want to take me to dinner because I am in a bad place now (phsycially and mentally)

Yes, we need to stay positive but sometimes Melissa, if somebody INSULTS ME WITH THINK POSITIVE I think I will vomit. We continue to progress with this illness (some of us) and MANY of you have lots more going on than I do (Poohbear, I was so sad to hear you were in the ER today)

The fact IS, sometimes we are sad. AND the HOLIDAYS can BRING OUT MAJOR DEPRESSION.

I keep telling myself I am going to read more the LAWS OF ATTRACTION and watch a DVD about it and STAY positive...but sometimes we DO NEED to give in to the sadness. It's too ExHAUSTING to just "put on a happy face."

I have given up Christmas trees or at least, big ones the require lights. I love lots of lights on trees but years ago in my last Christmas in my apt, the lights went out as I untangled them, then worked, got them on the tree and three days after it was decorated, half the lights went out. *&^%$#!?

so now, I do "Christmas vignettes" around the house. The top of the entertainment center and tables are covered in white towels and little Christmas decorations and ornaments. I have a tiny 6 inch tree my sister made, a two foot tree my room mate has, and a 3 foot white tree with all red ornaments. NONE have lights. Yet look adorable. AND take less energy. The little vignettes can sit atop a TV or anywhere.

So it's not the same as the family cutting the tree down together but just an idea Melissa of how to create low energy things that look cute. If I had the energy I would take some pics of mine and share. But I am terribly nauseated tonight and too tired to do it.

I am sorry, i did not mean to make YOUR POST about ME, ME, ME! I hate when people do that but I just so feel your pain, sadness and angst about the next couple of months. So reading your VENT hit home with me. I think it is easier on folks with husbands and house holds of their owns that are living MORE SELF sufficient than those of us counting on others for housing...etc. Plus a husband usually means instant companion even when everybody else is gone...or a special beau can do the same.

I am much older and have spent many holidays alone and sometimes the family would do things the weekend before or after. But starting last year, the person that had the TERRIFIC Christmas dinners at his house died, and with him gone and the big house to hold my sisters kids when they come to town, another LOCAL tradition dies as my sister now flies around the country to see her kids.

So I hope you just give into the grieving Melissa and figure out ways to handle it all. I know your year has been major struggles, hopes for therapy to help and then nightmare reactions. That's a rocky road itself and I am not talking ice cream.

I am sad you are in such a place. Be kind to yourself and give us an update when you feel up to it.

Sophia

[MomtoGiuliana]

Melissa--it is normal to mourn these real losses. The holidays are always a time of high expectations -and memories -- and for this reason, for many people, for many different reasons, the holidays are not the happiest time of year.

Thanksgiving and Christmas of 2002 I was unable to do or really enjoy anything. I remember how that felt.

I know you are not seeking answers, but to be heard. I hear you and hold you in my thoughts.

Katherine

[Sophia3]

Melissa

Hope you are able to think of ways to adjust to the changes to help your mood.

sorry I went off for so long on your post about ME but dang, you hit a nerve that I think many of us don't like to admit...Holidays can be challenging or depessing for a host of reasons.

Hang in there and be kind to yourself.

Soph

[Dizzy Dame]

Hi Melissa,

I can relate to many of your feelings about the holidays. This time of year reminds me of how sick I really am, and often I think about other depressing things, most having to do with the illness, or the fallout from getting so sick.

Hopefully you can find some comfort this holiday season!

((HUGS))

Lauren

[Sunfish]

thank you for all of your listening shoulders & thoughtful replies.

i have to be honest that i have a bit of a hard time posting these days beyond replying to others and or a quick medication question as i feel like a bit of an outsider at times (not by anyone's intention; just b/c of different circumstances). i guess i fear that people won't get where i'm at all b/c they truly can't relate (i.e. my not being able to eat) or that i'll get trite answers that will just make me more frustrated.

so thank you for hearing me out & just being there & letting me be where i'm at. really.

carmen i'm so sorry that you & the rest of your crew were/are sick but am at least glad you could cuddle up together. the parade was my favorite part of the day yesterday; i spent several years there in person (as my dad grew up right outside of NYC so we'd then join my grandparents for dinner) so it holds good memories for me.

and sophia i don't have to worry about a lack of decorations. while i can't really help anymore there will still be plenty up at the house. in some ways i wonder if that's harder at times though; i suppose it's hard either way. i'm glad that you had an unexpected good meal & visit from old friends yesterday, especially with your sister being away for such a stretch. and happy belated birthday too. and sorry to hear that you're in the post-op minority with cramping & bleeding

meagan so sorry that you've been in the hospital & ER; one thing i'm very thankful for is my PCP that's down the street from us who is determined to keep me out (while also being a wonderful doctor).

and for everyone who can relate to my ramblings at any level, big (((HUGS))).

holidays have been a mixed blessing for me for years in terms of my limitations; it's definitely not new to me. i just think that my total inability to eat, the fact that i've had to move in with my parents & the reality that i'm not likely to have a family of my own in the future have crossed some "threshold of difficulty" for me this year. b/c the moment i've adjusted to one loss, at least to some degree, another seems to come along.

and i think the thanksgiving alone issue was tougher b/c so much thought/planning had gone into my being able to join the family, even if not for the meal, that when something other than me (at least directly) left me alone for the day it was harder than if i'd been particularly ill myself (more so than my "normal" ill that is) and had to stay home or if i'd planned it that way from the get go.

melissa

[morgan617]

Sweet melissa, I so get you.

And kick butt to anyone saying, cheer up and be grateful....bah. This time of year has always been a struggle for me for various reasons, not the least of which is my health.

I got dilated on Wednesday and was so depressed. My gastro says he understands...but I tell him NO HE DOESN'T! I am going to get up Thursday and creep around making the most simple and mostly store bought things i can, and I won't even be able to eat most of it, and what I do is going to make me sick.

I stopped doing the cards afew years ago. My hubby will put up decorations, but they are still there from last year, because he doesn't want to take them back down! If I sent you a picture of my house in July, you would see Christmas lights dragging all over. It irritates the heck out of me, so i am not even in the mood to put them up.

I did cook yesterday and for the ninth year in a row my kids came from my daughter in laws stuffed. So the whole time they were here, I was just putting food away, and wanting to go lie down somewhere.

I know many single people think they are the ones alone, but it can sure happen when people are around you too. Football, computers, etc, healthy people doing their thing, while you lie there with your feet up just trying to survive.

I shop online, but it's down to my kids, period. it's too hard anymore.

I did not grow up with any real traditions and it was important to me to make some with my family, now I just pray to get through the holidays and then Jan and Feb, which are the very worst months for me.

I am grateful for the fair days I have, but they are getting fewer and farther between. I hate feeling like this, but it's very hard to put on that old smiley when you feel like the dog is the only thing that understands you. And that's only if you have treats for her...

Anyway, a bummer post here, but did want you to know you are not alone. I think so many of us just struggle to get through a regular day, and then these special days come and we are either alone, killing ourselves off to show we can still do stuff, or just bummed and wishing it was over.

My birthday falls into this space too, an added bonus......I wish things were better for you. When I was your age, I was a little healthier, but then I worked the holidays as I had no choice. Now I can't work, but I can't celebrate either and my kids are grown and don't care anymore anyway. It gets you coming or going I guess.

[Poohbear]

THinking of you and hoping you are feeling better today.

I wish I had something really helpful to offer. All I know to tell you is that these times are hard and chronic illness in general brings a very unique and different perspective on grief and loss than what most in our society are trained to deal with.

I find that sometimes you need permission to feel your feelings and express them the best way you can so they don't stay bottled up. Sometimes working on a collage, poem, journaling, painting....activities like that help me express my feelings and then I can "move forward again" and at other times I just try to distract myself.

I hope you are able to find something that is of some comfort to YOU during this time

[Sunfish]

morgan -

what does your GI doc think he's talking about?? regardless of how great of a doc he may or may not be, of course he doesn't get it!

i know what you mean about the being with people but still being "alone"; i don't think us single folk have an exclusive hold on the market. i.e. even though being by myself yesterday was rough, being with my family if i'd been able to go would have been hard too & has been for years - just in a different way.

and some things are actually tougher now that i'm at my parents in that i can't really get away from it all even when i need to (physically or otherwise). for instance i'd almost rather just skip my birthday altogether beyond perhaps nice cards/notes from good family/friends; yet they'll try to do something anyway here at the house that - however well intentioned - will just highlight how not okay things are & wear me out at the same time.

while i of course wish you didn't "get it" yourself, thanks for chiming in...

melissa

[Sunfish]

pooh -

thanks. i do write & journal some but really can't do other crafty stuff these days without paying for it to a degree that it hurts more than helps. nevermind that a lot of my stuff isn't unpacked & i can't physically do it myself.

i learned years ago - the hard way - that bottling things up does NOT work for me so i'm definitely not an advocate of that. as far as i'm concerned i give myself full permission to deal with my real feelings. not all of those around me agree or like this but other than in limited/specific moments i don't let others dictate what i need to stay as sane as i can for myself.

"letting it out" is much better for me; it's just hard that many of my outlets for doing this are no longer physically possible so while i could write a book on coping strategies, things are easier said than done. and trust me - i've been creative. so i do have my ways of "escape" & coping. a counselor i've seen on an off over the years for venting purposes says she's surprised i'm not more of a wreck than i am considering all that's gone on health-wise.

being at my parents makes it tougher in terms of being able to do what i need for me when i need to. they try and mean well but we have an old house with thin walls & an open design (i.e. not a lot of doors) so if others are home i can't just shut myself off & have a good cry in the same way i could when i lived on my own. my parents have to deal with enough in terms of my needing so much help physically & logistically that i can't expect them to cater their day-to-day routines entirely.

so yeah...i'm hanging in there but like you mentioned about being at a different spot than most of the world is so true. i feel like i'm on a different planet most days

hope you're hangin in there yourself,

melissa

[Tessa]

Hi Melissa

I am sorry you are suffering so much.

One thing I have learned of my "bad" health is that I have to enjoy day by day, I mean, moment per moment. If you feel good, enjoy it... Another thing is that I have to accept things the way they are... If I am unhealthy, I cannot change it... But I have to keep in mind that good days will come...

And I would like to add that I have learned that there are many excellent people around the globe, people I never met face to face but who have a big heart and want to help others. The people on this forum and you are one of them, Melissa.

You are doing a great job by writing on this forum. You are part of it and contribute to the wellbeing of others.

I met new friends, this forum has helped me a lot and I am sure that while you are writing on this forum, to vent or to exchange information, you are feeling much better. Because, when you give (without expecting a compensation) you always get twice...

You are there for us when we need you...

You are special. Don?t be depressed, you have friends.

You have us.

Take care,

Love,

Tessa

[Sunfish]

tessa-

thanks for your thoughtful words.

i totally agree with you - in theory - about enjoying things moment by moment. and i definitely know that i can't change my physical reality. but i think that the fact that a few of the things you mentioned aren't my current reality is what makes things as tough as they are this year. (i know you don't know me as well as some on the board since you're fairly new so wouldn't expect you to know this about me.)

i don't even know what "feeling good" means b/c while i have days that are worse than others i am fairly ill all of the time. i can't remember the last time i felt "good" or even "okay"; that was years ago for me. so while i would love to enjoy moments of "feeling good" that's not part of my day to day life any more. for me feeling "good" means that i can make it from my bed to the couch, being able to talk on the phone or read some while lying down, etc. occassionally on a really good day i can perhaps get out of the house for an hour in my wheelchair but pay for it dearly afterward.

i'm glad that you realize that good days will come for you; that's really important & hard to remember for many early in diagnosis & treatment, where i know you are. there are countless people on the board who can attest to improvements of varying degrees.

for me i spent years in the situation of looking toward better day but now have a different diagnosis & prognosis than most on the board so while i hope for any little improvements that may be possible via treatment or even a miracle, physically i will not necessarily have better days in my future. i don't say this to be negative, only realistic for ME; this isn't the case for you or for most others but just wanted to let you know that my writing about grieving future losses is based on a bit of a different situation.

thank you though for your thoughtfulness. i am not able to reply to every post but read them all so am sorry you had such a rough day yesterday & do hope that you are able to enjoy the meal with your friends.

melissa

[jenwclark]

Melissa,

I'm so sorry you're feeling isolated, even here, but I do understand why. I won't offer you any advice, because odds are good you've already figured out anything I can offer. I just want to say that I hear you, and like your therapist, I'm amazed at how well you do handle your situation.

I wish you luck battling your depression this season, and I hope you find some peace. I'm holding you in the light.

spike

[morgan617]

Sometimes we are just moment to moment, literally. I do appreciate my very short periods of being able to stay upright, but may be crashing just a moment later.

I've tried a lot of outlets too. Crafts and things, but find I can't see well enough anymore to read or journal. And it makes me very dizzy. I can't quilt, crochet, knit or any of those things I used to do because of bad shoulders, bad back, ans issues, etc.

It gets to a point where even attempting to find something to distract you gets too discouraging. I am not as sick as you Melissa, but my ride there is progressing at a pretty rapid rate.

I am not at all afraid to vent either. Sometimes you just have to. I was so irritated with my doctor, I finally just clammed up so I wouldn't say anything nasty I would regret. He felt that pureed turkey tasted just as good as regular turkey. HAR.....a great deal of what we taste is based on perception and texture too.

He agreed i probably need a feeding tube, "just not yet." I tried to explain that going 20 hours without eating wasn't a swell deal either, while he was saying giving me a general to insert the tube I need (that would prevent reflux and aspiration) would just be too dangerous, because if anyone would have complications, it would be me.

I understand that the few doctors who really do care about me don't want to be the ones making decisions that could potentially make me worse.....but on the other hand, some days it really can't get any worse.....and I have a clear understanding of those complications.....it's not like I don't understand more than they do!

I hate crying in front of my family too, because it makes them feel so helpless, but sometimes you just gotta do what you gotta do.

I agree, most people on here, as sick as they feel, can expect improvement in the quality of their life, but for those of us where the prognosis is not as rosy, it certainly does get frustrating. (I hate my birthday, when i get to watch everyone else eat my cake and ice cream)

I have to admire the people who just stay upbeat all the time and are always optimistic, but I've been sick so long, I can't remember a "good or great" day. And as each day gets a little worse, it just gets harder. I will be the first to admit I'm an eeyore more than a Pooh these days.......

Which is why i tend not to post as much.....It's hard to encourage everyone, when you yourself want to crawl off some where and have your own little pity party.....It's my life and I accept it. But I don't want to drag everyone else down in my little sinking ship. It's the reality, as you say melissa, and sometimes reality can't be wrapped in a pretty little bow to hide the sadness of that reality...

Someday there will be no need for a forum like this, but not in my lifetime.....so I pray for others...it's the best i can do....

[MightyMouse]

Melissa, I feel for you. Funny thing for me is that I've gotten more hopeful and cheerful as I've aged. Not sure what that's about, but I'm grateful for the optimism that I lacked during my childhood and early adulthood. I send wishes that your future is more healthy.

I've been fortunate to be able to work except for about two years, in total, of staying at home for various health problems. Being home most of the time really does change your vantage point on the world-- you amaze me that you're still able to be here and be helpful to so many people despite your daily and ongoing limitations.

Your health has been such a hurdle for you... venting is a healthy and normal thing. Glad you feel safe enough to do so here.

Nina

[DancingLight]

I'm working my way through this thread bit by bit....as I can't get through it all at once...and you have all brought me to tears....

There is so much wisdom in all of your words....thank you. I cried at Sophia's and Morgan's and Sunfish's and Poohbears and everyone's words.

It feels 'good' to grieve together, as I am struggling too...and Morgan, you are so right--I cannot remember what it means to have a 'good day' or a 'great day'...

My Sunfish...you know I am ALWAYS holding you in my heart and prayers...

and all of the rest of you too. I am grateful we have each other, especially as we struggle through the holidays...

I will continue to read this thread in bits as I can.

Goodnight,

Emily

[Poohbear]

Just wanted to say that I DO understand some of your hurdles and didn't mean to minimize how difficult finding an outlet for your feelings can be.

I mentioned the journaling, collage etc. Those are things I still do at times but it's drastically different than I used to be able to do. I literally paste one or two pictures at a time on a collage. I can sometimes sit for 20 minutes and make a bracelet but it makes me exhausted.

I pretty much can't get up and do anything without getting syncopal or at least needing to sleep a while.

Similar to you....most of the things I used to do for distraction, stress relief etc I can no longer do and you are right--you can only be so creative before you hit a wall.

I'm thankful for my laptop though!! My fellow dysautonomic sufferers are my lifeline ya know?!

Hang in there and vent away here all you need to!

[DancingLight]

Melissa et al...

So, it is 4:30 am and I have been up sick all night with that 'too sick to sleep' feeling, lying in bed curled in a ball, blah de blah and having LOTS of time to ruminate on this post, which stirred up a lot for me.

I thought I'd give posting a quick shot and then see if my mind and body will finally give in to sleep.

Two things have really stood out to me in this thread for Melissa (and others who have continued to grieve more losses over the years, myself included).

1. Melissa, you have a BIG HUGE BEAUTIFUL SPIRIT stuck in a body that will not cooperate. You want to create music, write a book, and on and on. And, on a more simple level, those of us who feel sick every moment of our days, just LONG for a way to do things that make this what is called 'life'--spending time with those we love (and being able to enjoy it), going to church and singing in the choir, eating a meal, etc. Not just at the holidays but every day, we feel our losses.

For me, I find that it is soooo hard to watch the losses pile up (no more reading, no more knitting, no more snail mail, no more leaving the house, etc) b/c I am grieving more than just each of those things in a way that is about losing the ability to feel ALIVE.

I find that if I cannot spend time on DINET, or visit with a friend, create, knit, show love, etc.--I am constantly saying HOW CAN I FILL MY SPIRIT????

I'm just not zen enough to find myself at peace with 'just being'. I want to be in the world and part of this world. I want to be with those I love and enjoy it, not feel sick every moment of it. I want to fill my spirit with the things I love and the poeple I love.

These losses you speak of Melissa, run so deep and so raw. I know that I cannot understand them on the same level as you completely. Still, as you know, there are very few things left that I can do. And, as much as it's nice to be able ot watch a little TV these days--that doesn't exactly fill my SOUL. It helps me escape for an hour from this crazy life on this alternate island that I would like to GET OFF OF!

2. I think too, that maybe your feelings are perhaps compounded by the fact that you KNOW your reality--a not so rosy reality--that for all we know right now, as I understand it, you cannot realistically say, 'Next year will be better' and hold on to that.

For those who have watched their health continue to deteriorate over the years (many of us posting here), how do we deal with knowing life will continue to be filled with losses that we never comprehended we'd face. As much as we take joy in what we are able--our animals, the blue sky, listening to music, etc.--it sometimes (or oftentimes) is hard to feel like this is enough to fell FULL on. I am bursting with things I want to do and a body that won't cooperate. This creates deep, deep, pain.

And yes, maybe I shouldn't put myself in this category of deteriorating health...simply b/c there is a 'hope' that the Lyme treatment may do soemthing in the end, but it will be a good couple of years before I really see improvements that may change my current quality of life. So, right now, I feel these losses that you describe very deeply. But, I also know, from our conversations, that this hope I have of improving however little, is more to hold on to than you have right now...and that, I think, especially at these times of the year, must be unbearable.

You cope in ways that I find amazing. You face each day. You give every day a shot. Every medical road a shot. You keep reading, learning and giving to thsoe you love. That is amazing. You ARE a gift to us, but I completely understand that you want sooooo much more.

I am struggling with the holidays too b/c I just feel so overhwelmed. The expectations of me getting gifts for folks (which how will I wrap? someone else will have to do them for me). The joy is taken out of things.

And, oh man, I soooo hate the 'but it's good for her' comments. That I need these things to keep me going and blah de blah. Rather than an understanding that my body can't do these things. I'm overloaded and overwhelmed ALL of the time, trying to be 'ENOUGH' to those I love.

I wish none of you had to spend holidays alone...I have not had to do that yet, and that is certainly my fear. But, I can't look ahead that far. I just pray my parents live to VERY ripe old ages!!!!! Without them, I would have no where to go. And, I have no siblings. Melissa, I also hear your pain of not being able to have a family and get married.

I also do not think you are being whiney or negative or anything...I think you are GRIEVING. And grieving really big losses. The things that fill you up, fill your spirit are being takne from you, and others here.

I wish I could respond to each and every one of you--Morgan, Poohbear, Sophia, etc. (BTW, Sophia, I do not think your post was all about ME, ME, ME as you said--or at least not in a way that I found irritating, so please do not worry! I really found your post beautfiul as I did morgan's posts and poohbears (good to see you all here!) I think the sharing of common experiences does not mean you are taking over the topic to talk about you. Hearing and sharing others losses or experiences helps me a great deal in coping and knowing I am not alone.

And, SOPHIA, if I don't get to post in your other thread (as it looks like I may not make it out of bed tomorrow since I have yet to sleep). HAPPY BIRTHDAY!!!! I'm sorry it was celebrated alone. I wish I had more words of wisdom, but you're the older one, so you are wiser anyways. hahahahahaahhahaha!

Okay, this is LONG, but you all wrote such wonderful posts and they really, really hit home with me. I am grateful that we have this place to go to. I, too, cannot wait for the holiday season to be over with...and, like Melissa, that's just NOT like me.

BTW, have any of you heard about Elizabeth Edwards new book, Saving Graces? Well, anyways, when her son, Wade, died she found the most comfort and solace in online support groups. It is amazing the power of the internet to be used in a positive way such as this, uniting those of us who might otherwise NEVER find someone else feeling the same way that we do.

Melissa, we may not always be able to relate to or understand what you are going through...but we will always try our best! And, you are loved and cherished here so much.

So, this leaves me still ruminating on my constant question of how we nourish our spirits when we are too sick to do so?! And, when I do see a friend (like yesterday) it is a short visit, during which I feel sick the entire time, and then pay hugely afterwards. It is so hard to not think about the consequences we will pay for the little joys we seek out.

Okay, if anyone actually made it to the end of this post...thanks for reading!!!!!! Although, it seems this thread has stirred a lot up for us and many of us are writing lots! BUT, I DID try to break up the paragraphs and all...but it IS 5 am?!? So who knows if any of this makes any sense!

The holidays just seem to magnify and amplify 1. those things we cannot do and 2. those things everyone else is doing! Our losses are even harder this time of year. For me, it's like being slapped with all the things I can no longer do and also aggravates my constant feelings of not being 'enough'...

All together now: GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!!!!!!!

As QS would say, I'm holding you all in the light... I LOVE that phrase! I use it often also. That, and, the idea that God or others who love us will sing our song for us when we cannot.

Later alligators,

Emily

[corina]

dear melissa,

i'm sorry to be short. know that we all are holding you and will get you through. we care about you and so understand you. i'm with you in thoughts and think about you,

corina

[Tessa]

I am very sorry that you are feeling this way, Melissa.

I can imagine your need to express your feelings, as well as feeling down from time to time.

I know we know echoder for not too long, but hope to be able to continue writing and exchanging information and support.

Thank you for caring about me.

I had the meal with our friends, but started feeling sick soon after. I have a terrible headache, nauseas and my eyes cannot stand the light. I think I will have to turn off the light and go to bed soon.

Take care,

Love,

Tessa

[morgan617]

Beautifully said Emily.....And on the mark....we grieve those things that others never even think about.

For awhile, I think we have to suffer what others do, before we realize how devastating this can be. Before I started passing out and needing a wheel chair, I felt so badly for those who did. Now that I need a wheel chair and pass out, there is a great deal more understanding to go with the empathy!

Melissa, I hope you do find some comfort somewhere, somehow. I struggle every darn day with it, and a lot of days it doesn't happen.

My mother never wanted anything to do with my kids, or my brother's daughter. When my sister had her daughter, much later than i did, (we are a year apart in age, our kids 10) my mom, for some reason, became very attached to my niece and spent every single day with her. Mom died when Chelsea was 3.

My kids, having never known my mom, felt badly for me, but no real sense of loss over my mom. My sister called and said I was "lucky" because her daughter was suffering the loss of her grandma. I felt she was lucky, because her daughter got a chance to have a grandma.

I guess what I'm trying to say is our losses can be relative. What doesn't feel like a loss to one person, can be devastating to another. You could say I was luckier because i have a husband and kids. I could say you are the lucky one, because you don't have a husband or kids to worry about, or be too sick to share any real life with. It's all relative. Losses are losses, grieving is individual our sadness is ours to own. What one sees as a blessing, another may see as a burden.

The comfort we get from each other hopefully crosses those individual differences. Sometimes it's all we have to hang onto. That even though you are grieving over something different than me , the common thread is there....the grief itself. The sense of loss, the lack of quality.

Vent away girl, as you can see, a giant nerve has been touched in all those posting here, we are all grieving something or many things. Today my comfort will be that I'm not alone in this.....you are not either.

Cyberfriends will just have to carry some of us for now and maybe for a long time......

[DancingLight]

Thank you Morgan,

I am so glad to have you 'back in action' on the board. You have so much wisdom.

Yes, this post has definitely been felt deeply by some of us, I think especially the sickest of us...

My spirit still dances, but my body does not...and I WANT both!!!!

Goodnight!!!

Emily