posted
Hi everyone and Merry Christmas! was wondering what others struggle with in having Lyme over big holidays and how you cope with it.
My main problems are exhaustion, pain, and isolation.
I'm a single mom of an 11-yr-old and a 9-yr-old. At least they don't believe in Santa anymore, so I don't have to come up with 50+ presents each this yer. I just explained that we have less money than their friends, as I can only work part-time with this illness.
I got out of Christmas dinner duty by ordering ours from Publix.
My kids are still going crazy though with school out and me not well enough to drive them around to all their activities. They make me feel like a bad mom.
I can't drive to see relatives, as the nearest ones are 12 hours away, and I can't have guests over here either, as I'm to sick to be a hostess.
Loneliness is a big problem with my illness as well, as I haven't the time, strength, or money to keep up with friends. My kids will be at their father's house for C'mas Eve, leaving me alone. I agreed to go to church with my ex fiance on Christmas Eve, mostly to combat my own loneliness.
What struggles do you face with lyme over Christmas, and how do you deal with them?
-------------------- Ellen _ _ ___________ _ _ lyme disease dysautonomia Chiari malformation anxiety Posts: 72 | From Birmingham, AL | Registered: Dec 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I can offer this, as I have children, too-
Christmas vacation for the kids is a good time to snuggle up and take it easy- a lot of great Christmas movies are on TV (and your kids' ages are perfect)
Lit tree in the background, stock up the house with good food, and chill. One of my kids is, shall we say, restless, so I have to tell her 'it's a stay home day'
or let her know 'this 1 or 2 things is our outing, then home'
Computer games, art projects they can do, read a book! etc. And, after Wednesday, new stuff to keep them occupied.
Wrapping up the 1st trimester of school is stressful and fun for them- let them unwind now.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Invited again to my brother and best friends house (sis in law now). I had to flake on Thanksgiving and they have been very distant since, except for this Christmas invite.
I am housebound for a reason....I'm sick all of the time with this rotten disease. And it doesn't take a holiday off for me to enjoy life or family.
But their patience is gone and I'm always the sick one who lets everyone down..again and again and again. Got so bad my sis in law invited me by saying "we're having Christmas. Come, don't come, it doesn't matter." Thanks lyme, there goes my last friend who is about to call it quits w/me. And my dh is pulling away f/even playing carols in the house...he said Christmas means nothing to him anymore. He knows how bad my days and nights are but even HE says, I've ruined another holiday if we don't go.
Yep, I'm a loser.....it's all my fault...I always look for an excuse not to go anywhere, etc etc etc. Posts: 867 | From PA | Registered: Jan 2006
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
We understand! We've had to miss so many things because of this illness......
We try to do the best we can with what we've got and have our own little family Christmas.
Posts: 2605 | From USA | Registered: Aug 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
Since I dont have kids or famiky nearby or friends, I can ignore it.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I found being around all the family members to be absolutely the most exhausting.....I'm sick as can be, on the couch, feel like death for years.
Then I learned something. I learned to not stay as long as we used too. When I'm done, I'm done. Home NOW.
I also learned that some of my family and loved ones actually were toxic to me. Yes, toxic. They drained what little energy I had.
Doesn't mean I stay away completely. I hug them and speak with them and then I try not to get cornered into being with them. I roam out of room.
I try to not let them doing much communicating with me. I do these for my health and well being. Until I get strong enough to handle the toxic matter.
Or I've also learned not to carry around my family garbage. I was always the "keeper" of my family. Oldest of five and that is typical of birth order.
I gave up the keeper of the family 3 years ago. No longer will I let any of them try to lead me into handling a family situation or feeling responsible to take care of something that others should be helping with.
I also had to learn this with our social group of couples, our hang out friends. When an event was coming up.....I rested and let everything go so I would have ability to attend something planned.
Sometimes I do have to miss some things. My husband knows if I could do it, I would. Even friends or spouse of friend can be a drainer or toxic to your being.
So my husband is the reason that I sometimes did things that I was absolutely in no shape to do. I would pay for it.
But I did get some social activity out of it. Fighting loneness with this illness is even more symptomatic.
My friends know when I'm not well and it's not from me telling them. Even lymenet I consider to be socializing. I just stay away, if need be. Husband sometimes goes on without me and that's the way I want it.
I would disappear for stretches from this site in the last 11 years. I would read, but I couldn't post/socialize because it would be during a very rough period for me.
Just reading would help me deal with knowing I'm not alone in this world of Lyme & co. For that I am blessed.
Now I have a Lyme support group. What a blessing to have face to face contact with those that know how you feel. In fact I'm a co-founder and yes there are some in our group that are draining to me. The no longer than 2 hr meetings can wipe me out!!!!!!!! Communicating and answering posts from our website is also a huge task.
The blessings out weigh the negatives. We are helping others find their path. Rene and I are thanked all the time for starting this support group.
If you have a support group in your area? Join it. Look at the left side of this page. Look for box that is orange/green and click on support groups.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
Randibear, so sorry you're alone, but your solution is the most appealing of all! Right now it's 10am and I'm still stuck in bed. My kids are in the living room playing. What really hurts is that they're counting down the hours before they can go visit their dad for his annual Christmas party. There's just no way in the world I can compete with him for showing the kids a good time. My son dreads another day stuck at home with me- not because I'm here, but because he's so active and outgoing and such a party-er. My daughter's content just to snuggle up with me, read, do crafts, watch a movie ect. Think my son is ADHD. Just hurts so badly that he's counting down the hours before he gets to leave home. Overall, I'm very thankful to have kids and wouldn't trade them for the world, but holidays are no fun. I just can't put on the 2-week-long party my son expects over Christmas break.
My ex-fiance called me wanting me back,not to marry me but just to be with me. I made it very clear that I need him to be open, honest, and emotionally intimate with me or not have me at all. He chose the former, and since I've gotten over the idea of ever marrying him, I agreed to see him now and then. He doesn't push me to do more than I'm capable of. I'll be seeing him Christmas Eve, as my kids will be visiting their dad. I need the company.
Healthywealthywise, please don't let other people condemn you for being sick. If they refuse to accept you when you're ill, they're not friends worth keeping. I too lost my best friend, my sister, over lyme, but I have to just keep reminding myself that she's not who I thought she was; she's a sunny day friend only. Stay away from those who wont accept you when you're sick. My kids are impatient with me simply because they're kids. You have to set healthy boundaries with toxic adults.
Thank you guys for replying and for your support. I haven't the time or physical strength to attend an in-person support group, so I count YOU as my support group. Thank you for being here for me.
Have a blessed, merry, and peaceful Christmas. Ellen
-------------------- Ellen _ _ ___________ _ _ lyme disease dysautonomia Chiari malformation anxiety Posts: 72 | From Birmingham, AL | Registered: Dec 2013
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I haven't been able to clean or decorate for the holidays. I cannot vacuum, as my hands are too weak...last time that I vacuumed for ten minutes, my arms ached for days.
The muscle weakness and fatigue have been getting worse. My sense of balance is off, and when I walk I look as if I'm going to tip over.
However, I'm not in agony with pain and migraines, like I was years ago. I've found supplements to help reduce that.
I ordered some things on sale for my kids, but my husband helpfully threw out the boxes I was saving to use for them.
I haven't sent cards in a couple years, and only a few friends/relatives still send to us. My SIL is having dinner, and my guys will bring back food for me. I'll be sleeping.
I'm too fatigued to care much.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
Carol, trust me.......your kids will still love the gifts you give them.....even if they aren't wrapped at all.
My folks had 8 kids....we NEVER got a wrapped present! We just got directed to a pile that was ours. (They were only human and not sick...heh heh.)
Trust, if they have their own little pile or stack or even if just one present, they will dive in to see what Santa brought...and LOVE EVERY SECOND OF IT.
Let that one go......for you and for your husband? Not important in big scheme, right?
Posts: 867 | From PA | Registered: Jan 2006
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I think we all feel your pain. Maybe staying in and watching movies, playing cards, games etc would be fun.
Pop some popcorn and watch a movie.
Do they like to bake? Baking some slice and bake cookies would be easy. Get some sugar cookie dough and some sprinkles and the kids could decorate.
Then, of course, you get to eat it!
My in-laws are pretty difficult too. They have taken my illnesses personally for years.
Last time I went there for my FIL's funeral, my SIL said, "you only come here when you have to."
Well duh! Why would I come to your house when I didn't absolutely have to? You're just so warm and fuzzy to be around. Blech!
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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