Topic: Anyone bedbound for the holidays and thoughts on how to feel festive
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I'm really struggling this holiday season and wondering if others are in this same boat and if so, how you are coping.
I went five years undiganosed, but even last Christmas, I had my good and bad days, so I was still able to bluff my way through the holidays and appear cheerful.
I was FINALLY diagnosed with lyme and possible co infections early November so in my silly mind, thought I was finally going to feel better.
Instead, I started herxing four days into my antibiotic and have been herxing since. Spoke to the doctor and he felt bart was involved so swapped me to Cipro on Tuesday.
I'm still feeling so weak and just going to the bathroom has me huffing and puffing like I just ran a marathon.
The family is always off shopping and decorating and feeling festive and I honestly appreciate all my house decorating, but yet there is a part of me on this dang ole pity pot.
I don't like my grumpy Scrooge type attitude and even worse, it's tough when you have always looked at antibioitcs as fixing that darn ear infection or whatevere in a couple of days.
So as I come up on two months and know my road will still be long, I continue to hear that I should be better by Christmas now that I know what is wrong and on treatment.
But I'm NOT better and I want to atleast put on an Accademy Award performance and pretend I'm feeling better. Just how do you do that when you still feel so darn sick?
My heart is always racing, I'm soaking my bed in sweats and I chill when I even go to the bathroom, so are there any tips on how to get through the holidays and not show or vent what so many of us must be feeling inside?
I have a walker that has the seat so I can sit when I tire, but even sitting is too much and I want the nearest couch before I pass out. My LLMD didn't feel this reaction was unusual for the first few months that you start treatment....
But when you are the one going through it, I just try to take focus that by next Christmas I shouldn't still be spending so many long hours in bed.
If it weren't for my laptop keeping me company so I can lay down as I type, I know that without this place, I would have been stir crazy long before now.
Any tips or guidance on how to just truly let go and accept we are sick. I'm having trouble with the "acceptance" part of this illness and still want to wake up and find out it's a horrible dream.
If nothing else, thank you for letting me vent. I'm seriously not a "downer" in life, but dang, this illness got me good.
How do we get that festive feeling when we are stuck in bed with all the hustle and bustle going on as if we don't even exist? I need happy thoughts. Any out there?
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I feel for you. This is a very difficult time of the year to be ill. My daughter, as everyone on the board knows, has had a sloooooow recovery. She was diagnosed almost a year ago. Bartonella is her main infection.
I have decorated the house to beat the band so that she feels enveloped by the holidays. I know I have over 1,000 twinkle lights going on here.
Even here in the SW, she feels the chill. The other night she was able to ride her bike and look at lights in the neighborhood. The temps were in the balmy 50's and she had three layers of sweats on.
It was the first time in four years she has ridden her bike. She said it was the first time she didn't feel totally helpless and dependent.
Today, her legs are killing her.
I know last year, before we knew what she had, and she was in the worst pain of her life, and no pain meds to help, we watched hours and hours of DVD's. I'm not kidding. We would watch a whole series of television shows in three days.
Next year will be different for you. Just know this is a small season of your life, and you will get better.
I'm glad you shared your heart, it will speak to others here, as well.
posted
I spent last Xmas in bed. People understand. This Xmas I am much more up and about. I say, Rest, and don't put on a show for others.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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bettyg
Unregistered
posted
quoting jeff:
and don't put on a show for others....
Cathy, JUST BE YOURSELF, and let others see with THEIR OWN EYES how bad you are this Christmas season.
IF they ask how you are doing, tell them honestly; don't hold anything back, and maybe IF they didn't get it before; NOW they will seeing you as you are today.
I loved the idea of watching christmas movies/comedies together! you can sleep as necessary.
Next year, you WILL BE BETTER, and can enjoy doing things you're not able to this year.
This is the FIRST YEAR in our 32 years of marriage, I've NOT decorated and put up our ARTIFICIAL tree! My hip needs replacement surgery, and it's not worth it to me for all the pain I have to go thru to get it up nicely.
I did my email xmas letters; NO BAKING; and those recipients get money! simple!
Those without email were 12 letters mailed.
If your family can do ANYTHING to help you more, ASK THEM; they've offered their help before.
Thanks for sharing your gut feelings with us all; we hope/pray we ALL will be better and in remission.
Our NEW YEARS' GOAL ... A CURE FOR LYME! in OUR LIFETIME!
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi tdtid,
I'm sorry you're feeling so terrible, but I'm glad you've been diagnosed and in treatment now. That's a big accomplishment.
I'm not bedfast, but I watch my 14 yo dd in pain everyday...it's agonizing just seeing her suffer. Today has been worse. The pain medicine doesn't help. Now my 3 year old is developing new pains in her neck.
No one understands. Everyone thinks we should be well in a few weeks. They don't realize this is a chronic infection that will take a while to overome. They think these children just need more attention and like being sick.
I agree with the others, don't put on a mask...let your firends and family know how you feel.
I'll pray for you today tdtid...for comfort and for healing. You will get through this and will feel better.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Thank you all for your wisdom and pep talk. I'm not sure it's as much that I actually need to put on a show, since everyone has known I've been sick for awhile so I would fool no one.
I guess my thought process went along the lines that sometimes when you THINK you are doing better and play that role, perhaps you will convince yourself you are better too.
I just need to get out of this rutt. I know I haven't even been on meds for two full months, but I still feel like I'm losing ground more and more every day.
Basically I just didn't want to bring others down or dampen their enthusiasm, hence the pretending I'm holding up.
Perhaps I just have too much brain fog to even think this out clearly.
Bottom line, I feel like crying, but that would make others feel badly and I don't want that side to be shown at this time. I don't want to be the focus of a pity pot party, if that helps make sense.
So maybe it would have been better to ask how I can remain sick but not inflict it on others? Heck, I don't even know my question, but I do thank those of you that have taken the time to listen to my emotional outcry.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I began treatment for Bart and babs last year in early December.
On both Christmas eve and Christmas day, I had seizures that lasted hours. For several days after that, I was weak and completely depleted. These were new symptoms -- terrifying -- and I felt scared and pretty sorry for myself.
Because I'd been on abx for Lyme almost 6 months by then, it all seemed particularly harsh and awful.
I tried to be a martyr about it all and encouraged my SO to attend family functions (obviously after the bouts with seizures). That was a mistake, because I felt even sorrier for myself when I was alone.
So we spent the week between Christmas and New Years watching several different tv series that had come out on DVD -- the first season of House and severeal seasons of Sex and the City that we'd missed.
It was really a pretty awful time, one of the worst I've had being sick.
It also passed. This year, I'm a LOT better (havin't had the seizures since then). More energy, stronger. I still have to pace myself, but I've already been to four or five parties and gatherings and have more planned this weekend.
I guess what I'm trying to say is that it's just hard to be in the situation you're in...and it's not fair. And I'm sorry. But it also does get better with time.
For me, pushing things has never been a good idea when it comes to Lyme. Seems the harder I tried to buck the disease, the worse things got. So wrap yourself in some warm blankets (lots of them), rent some movies youve been wanting to see, brew a pot of tea. Take care of yourself and be hopeful that, with care, the new year will be different...
Andie
Posts: 2549 | From never never land | Registered: May 2005
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It sounds to me like you really need a good cry. Let it all out. I lock myself in the bathroom if i don't want people to see it.
I believe crying lets out a lot of the toxins we build up from stress. Thats my idea anyway Maybe that why people who have lyme are so weepy.
Have a good cry. Then wash your face and carry on with a renewed sense of determination. You ARE going to get better. You ARE on the road to recovery now. But dont force yourself to act well to protect your family.
Try to enjoy the season as best u can. Happy holidays!
Posts: 15 | From USA | Registered: Jul 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Cathy,
just want to wish you a happy holiday. While not bed-bound, I remember when lyme had me bed-bound, and all I could do was watch TV or movies.
So let everyone know --- a good gift to get you are dvd's! lots of great shows out there.
Take good care, ella
Posts: 2557 | From home | Registered: Aug 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Cathy,
I can so relate to what you are going through this year. Five years ago I had just been (mis)dx'd with CFS/FM and had begun treatment first for my severe Neurally Mediated Hypotension which had me bed-bound with my feet over the back of the sofa whenever I had been sitting up for more than a few minutes at a time.
To make matters worse my daughter thought I was making it all up (after all, her dad told her I was) and had no appreciation for how I felt. It was so hard to have my kids here and not be able to do anything with them (they are all adults).
You've been given good advice about just doing what you can and not trying to pretend you feel different from what you do. Yes, it's hard, but you're on treatment and I'll bet that by this time next year you will be a lot better.
I've been on abx for almost nine months now and have a very long way to go, but I am already able to do some things I couldn't do last year at this time.
I have a feeling that when I address co-infections I'll face a setback like you are dealing with now.
Find something you enjoy that you are able to do, watching a favorite holiday movie, talking to a friend on the phone, whatever it is. Let you family know you want to hear all about what they are doing, but you just can't do it with them this year.
Hang in there!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Thanks again to all those that shared their part of their own lives. It especially gives inspiration when so many can relate to being in this stage but then can talk about it being in the past.
I obvioulsy look forward to this stage being in the past. I know it will be a long battle but I obviously was writing this when I was extremely overwhelmed and scared.
As it turned out, I was so fatigued, I fell asleep on the couch and don't really remember much of anything going on for Christmas Eve.
Then on Christmas, one of my daughters opened my gifts for me as I zoned in and out. Just couldn't muster the enthursiam but other than laying my head down any room I was in, I was present in body, if not mind.
But there was great advice here and letting the pressure off myself to not fight it was good information. As was knowing that others have been here and it won't be in this stage forever.
Thank you for the great insight. It's truly a caring and understanding group. Not sure how those cope with lyme and co-infections that don't know about this board yet.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I don't know where your beliefs stand, but everyone knows the 23rd Psalm. I often think of that when I'm so exhausted that my body needs to have restful healing.
" He makes me lie down in green pastures"
When I think I have to do it all, sometimes the choice is taken from me and I have no choice but to allow my body to completely rest.
Your body is in a period of toxicity and recovery. If you knew someone with cancer and they were in the throws of chemo, you would tell them to take it easy.
I'm so glad you didn't push it and be supermom. Next year will be different, and this year will be a distant memory. Except for the fact that your family loved and took care of you.....for a change!
Have a wonderful New Year.
Posts: 2903 | From AZ | Registered: Feb 2006
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Maybe that why people who have lyme are so weepy.![[dizzy]](graemlins/dizzy.gif)
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It was so hard to have my kids here and not be able to do anything with them (they are all adults). ![[Frown]](frown.gif)
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