Worried i will spoil Christmas

[Jemima37]

My family used to do Christmas big. My dad was a department store window decorator in the '60s & '70s and knew how to make everything so special.

Now neither my mom nor I have energy to decorate, or go gather with family. We can't eat the foods to begin with; can't be around everyone's perfumes, etc.

It can be discouraging and I sometimes feel like I'm causing her to miss out but she is too fragile to go anywhere either. I still try to have one thing special though like cooking a favorite food such as steak or shrimp. (Can't do a whole menu.) Plus, if the noise isn't too much sometimes we'll watch a Christmas movie.

Traditions change and holidays can still be special if you do something to commemorate them. I think presents in bed sounds wonderful. You'll be starting a new tradition with your family pajama party.

Just do what you can. It can still feel special even if you have to make new traditions.

Thank you so much. Your reply was so helpful. You've all been so kind to me.

A pj party sounds really nice and a better way to think about it. Thank you.

It is my first year with cfs and anxiety this debilitating at Christmas so it's a huge overwhelm and fear for me as a mother. Thank you all for reassuring me.

Merry Christmas to you.

 

[Jemima37]

How are you doing @Jemima37 ? Just checking on you!

Hi

I'm doing better for posting. Hubby also sat and talked to the kids tonight and they were all amazing, he even showed a few replies from here that made them all fully understand and they told me not to worry and that we are going to have the best Christmas ever.

Thank you for checking in on me.

 

[Jemima37]

I am wondering if what overwhelmed you @Jemima37 is that this is the first "new" or different Christmas, and it's unlike the ones in years past.
A first time for everything is always a bit overwhelming.

I have a feeling you will have a lovely warm Christmas Day with lots of atmosphere and gentle fun, and some peace of mind I hope?

Thank you. I hope so.

Yes it is my first year with cfs and anxiety to this degree so Christmas has been a huge fear. You've all been so kind and reassuring which has helped me a lot. Thank you.

 

[jesse's mom]

I am so glad, this gets easier over time. It does for me anyhow.

 

[Jemima37]

Hello all

My hubby talked to our children and they were all great about me needing rest periods during the day. They understood why and were totally fine and sajd they don't expect anything of me on Christmas day and I had to stop worrying about it as they are going to have a good day. Hubby explained how I was feeling guilty etc and they all sajd there was no need.

They know we are opening gifts in our bedroom and all totally fine about it. Hubby told them we had ordered dinner from a local restaurant and they ree delivering. The children's first reaction was 'what's s mum eating? Hybbg told them I'd have a small dinner but I may not feel up to eating much. He didn't tell them I'm suffering terrible nausea due to anxiety and all this overwhelm about Christmas. They've said we will eat together in my room but I admit I'm terrified it'll be too much. Due to anxiety my bowels go crazy and I get bad nausea and being terrified of being sick this isn't a good mix. So I know Christmas day all that smell of food in my bedroom will be too much for me. Last year I felt the same but pushed myself downstairs and got through a meal feeling awful. This year I csnt push myself downstairs but my fear of my nausea will trigger panic I just know it'll be a tough day for me. Due to all the guilt etc and it any first Christmas as a mum with cfs and anxiety to this degree.

Im too scared though to accept this is too much for me because as a mum I have to push myself for my children. I can't tell them I csnt sit with them even in my bedroom for Christmas lunch. I just can't do that to them. Im crying as I type this. If they all sat downstairs while I rest upstairs I'd be so upset and worried they all felt down or sad I wasn't sat with them.
I just don't know what to do, I feel I'm letting the anxiety caused nausea win but I just know I will have an upset tummy due to anxiety anyway on Christmas day so won't be up to eating. I just can't cope with the nausea and pressure of sitting around a huge meal smelling food etc...

We do cheese and crackers night in the evening and i dont feel as anxious about that as evenings my anxiety is always calmer. I'm just being realistic about the day meal but I feel under immense pressure about it and that's causing me huge anxiety. I've said now we will eat in my room due to my cfs and as long as we are together it doesn't matter where we are Christmas day etc.. I can't now go back on that.

I'm so angry at myself for letting this worry me and feel I'm the worst let down to my children this Christmas if I can't even sit with them for a meal. I'm such a terrible mum like this.

Sorry, just needed to get this out of my mind. I've been upset all morning and upset other people are there excited, getting hair done, taking kids to festive events and I'm here crying I won't even manage a meal with my family. I've had cfs 3 years but it's only been this bad this year since I had a complete breakdown with anxiety and since diagnosed with depression due to the cfs worsening. It's been awful.

 

[jesse's mom]

Oh, @Jemima37 , It is an awful illness. There are still a few days, I for one am trying to rest. I am so overtired from having the granddaughter most of the week, that I am afraid I will be in PEM for Christmas day.

But, really we cannot get ahead of ourselves. I go through so many changes from day to day and from hour to hour that it is a crapshoot as to how the day will go. I was thinking of a Christmas about 50 years ago at my grandmother's house. The whole family came down with a stomach bug. Here I was, a little girl and my grandmother would send me around the three adult couples giving them water, Ice and whatever I could handle. My Grandmother and I were the "last men standing" I remember a lot of Holidays, This one sticks out.. Still!

Maybe try to go really easy for the next few days. I have this issue you may or may not have; that is I still try to micromanage my family's schedule. Like buying the things we need for the meal. I wanted my husband to go ahead and buy the turkey yesterday, so it will have plenty of time to thaw in the refrigerator. Just in case he got sidetracked. "No", he said, "I'm all yours for a few days!". So this morning I wake up to my granddaughter crying. She was turned away from daycare for having a little allergy in one of her eyes... Now he has to take our youngest daughter to her regular doctor appointment that has been scheduled for 6 months, and we have the two year old!

I have adjusted in many ways, but many of us still have struggles! You are not alone! This will play out and you will learn more and more about how to protect yourself from making yourself sicker!

Best to you!
S

 

[StarChild56]

I understand how you are feeling. I know about the Mom guilt that comes from not being able to do what we used to do. But please understand this, Your children are glad to have you there, no matter how they have to adjust. Like my own children have said, we would rather have a mom who has to stay in bed than no mom at all. It is your presence that matters, not the things you can or can't do. They are comforted knowing you are there in the next room. They need your love, the quiet conversations, the smiles, the advice. Perfectly trimmed trees, beautifully wrapped gifts, delicious meals, those are for our own vanity, not for our children. All our children need is us, in whatever form we happen to be available. Relax and know that you are enough. Just you, not the things you do. Merry Christmas!

Your reply totally choked me up. Big, fat, sad and frustrated tears rolling down my cheeks. This has been my biggest struggle. I am most sad for my youngest child and feel so acutely how much he has gotten the short end of the stick. And he doesn't even really remember me any other way.This kills me. I had to stop writing because I was crying so hard.

However, as you said - the most important thing to our kids is that we are here to hug them and love them. To truly be there for them whenever they need YOU - no one can replace you \ as your kid's mom/dad/parent - you are their rock even if you can't get out of bed.

@Jemima37 I know your pain, I am living it each day. I try not to dwell on it because in the end - it makes me so upset I will make myself less able to be there in whatever comforting way I am able to be, if that makes sense.

One suggestion - but it may be too much stimulation for you - but since I can't play board games (it would be too taxing for me and I can't sit up and move things well, etc.) - I usually am in my recliner (laying to some degree or completely) or bed - my kids and husband brought the Wii into my room and we played board games / games - like Jenga, we have played Monopoloy but the moving graphics are very hard for me to tolerate), several others and since everyone takes a turn, it means you get to not actively do something for some time while everyone else has their turn. It may be too much for you or not appealing to your kids (my youngest is in elementary school so it was geared somewhat towards him, but something we all do together if that makes sense). I am sure they have other types of games that may be more appealing to you guys.

But also like everyone else said - let them come open presents in your bed - heck let everyone eat in there, too. You remind me of last New Year's. I was DETERMINED to eat dinner at the table. (I again, almost never leave my room really except MD/Lab appointments). I could not possibly have put on make up. But I dragged myself to the table. Sitting there, one of my kids said, "Mom. Are you okay? You look exhausted." That is significant because I mean they are all used to me looking pretty sick and poorly; soft t shirs and soft pants, no make up, hair uncombed, etc. And the truth of it was I was so sick and felt so poorly - that the thing that gives me the MOST joy - to be with my family - I could not enjoy because I was too ill and it was too taxing just to have gotten up and sit there. I barely ate. I then went and laid on the cough (it is a large combo living-dining room) while they finished dinner then retired to my room.

So I know how you feel. I am sorry. It is so painful. It is so hard. It is so frustrating. You feel helpless, hopeless, sad and angry.

Wishing you peace and happiness, even if it looks different than how we have always seen it in the past.

 

[StarChild56]

I'm so angry at myself for letting this worry me and feel I'm the worst let down to my children this Christmas if I can't even sit with them for a meal. I'm such a terrible mum like this.

I know this feeling. I hate it. It is not true that you are a terrible mom - no matter how you feel. But, if you can, try to give yourself a break. Would your children want you to feel this way? Would you want your kids to feel this way if they were in your position? Give yourself the kindness you give your children. Unfortunately - and this is my own struggle so I hope I don't offend cause I only want to help - feeling guilty and like you are a terrible mom, well it makes you MORE unhappy and less able to do whatever things you can (hugs, or even just your presence for a while) do so it not only does not help or solve things, it hurts everyone. On the other hand, we have to be able to express these feelings and allow ourselves to "feel" these painful things vs. stuffing them. But we also may need to strive (at least I do) for a balance - I need to be able to go through my feelings, express them, cry, etc. But I then need to try to move forward and past them. Like have a mental box that I am allowed to unpack, look at, cry - whatever, but then put it all back and close the box for a while. Otherwise, I would never stop crying and raging. I hope that makes sense.

I also don't know if I could stand to have everyone eat a real dinner in my room as I can't stand food smells even stuff I love. When they cook, they have to:
Open the patio door that is in the kitchen (my room is adjacent to it)
Put a giant fan in the main hallway just outside of my little hallway that goes into my room - blowing any kitchen smells out the patio door, hopefully
Turn on a big fan in my little hallway to my room - facing my closed door (as otherwise smells linger there)
Turn off the AC/Heat
Sometimes, stick a towel under my door

I also have an air purifier and ceiling fan going at all times in my room.

So maybe they have - and I know how this hurts, Lord knows I do...I can hardly bring myself to type this - maybe they have the restaurant catered meal without you, but later - snacks, cookies, hot chocolate - things that may not overwhelm your senses...Idk, I would be the same as you and probably "suffer" so that I could be there with them while we have our family meal even if I didn't eat much. Maybe open windows/doors to help with the smells? Just for a little bit?

Hugs I know how hard this is. Really I do.

 

[Jemima37]

I apologise this is a group reply but thank you ladies for your lovely messages this afternoon in response to my recent brain dump. I really appreciate everyone's replies because I don't have anyone else with CFS who understands and I don't have any family other than my husband and children.

You are right that we can't dwell on these negative emotions because if we did we cry all day and never ever stop. I've had times recently where i have cried for days on end and when the children come home school I've had to hide it and put on a front I have realised that this is so exhausting was taxing my body more, by being so upset and crying all day my CFS was really bad so I am learning to have a little box where I park negative emotions and try not to dwell because at the end of the day is making me more sick. It's just hard, I think I feel like I'm in a grieving process at the moment because this year has been like true CFS where as before it was fairly mild to moderate, I'd have weeks where I could function quite well but his year it's been more severe and I haven't left my home in months now so it's really difficult. I think with the time of year that it is as well it's the guilt you feel as a mother which I know you ladies understand.

Thank you all. My husband has actually suggested they eat as normal at the table and in the evening we do our regular cheese and snacks night with me, maybe play some card games and a movie which I'm sure I could manage if I'm just resting on my bed.

Thank you all so much and I apologise for a group reply my eyes are just so tired now and I really struggle looking at screens for long (guess that's another cfs symptom lol) .

Merry Christmas to you all. I wish you the best.

Jem

 

[StarChild56]

It is a grieving process and as I've worsened over the last couple of years - at each level I am grieving anew. It can be unbearable.

 

[jesse's mom]

It is so true that we are grieving! It comes in different levels for me too.
I actually so a lot of my crying first thing in the morning, it hits me again that I wake up exhausted most mornings. I still have days where I cry all day, but it is passing for now.

There is an option on this board that I use that makes the screen much more bearable to look at. If you go to your name at the top of the page, then click on preferences the very top of the page that will pop up will give you choices of how to view the pages. If you choose XenForo 1.2 dark blue it will put up a grey background that is much easier for me to look at. I hope that little tip helps you!

Take good care of yourself!

oxox

 

[Jemima37]

It is so true that we are grieving! It comes in different levels for me too.
I actually so a lot of my crying first thing in the morning, it hits me again that I wake up exhausted most mornings. I still have days where I cry all day, but it is passing for now.

There is an option on this board that I use that makes the screen much more bearable to look at. If you go to your name at the top of the page, then click on preferences the very top of the page that will pop up will give you choices of how to view the pages. If you choose XenForo 1.2 dark blue it will put up a grey background that is much easier for me to look at. I hope that little tip helps you!

Take good care of yourself!

oxox

Thank you so much xoxo

 

[Judee]

Please don't feel like you have to reply to each of us or even that you have to put a long post if you are having a hard day. Of course, if you are having an emotionally hard day and need to get all your thoughts expressed a long post can help but otherwise don't feel obligated. We understand.

Sometimes I'm too tired to reply so I just "like" everyone's replies to me so they know I saw their post and then go back and reply later.

 

[Jemima37]

Please don't feel like you have to reply to each of us or even that you have to put a long post if you are having a hard day. Of course, if you are having an emotionally hard day and need to get all your thoughts expressed a long post can help but otherwise don't feel obligated. We understand.

Sometimes I'm too tired to reply so I just "like" everyone's replies to me so they know I saw their post and then go back and reply later.

Thank you

 

[Wolfcub]

I get times of that grieving too. It hits me out of the blue sometimes. I'll have a little meltdown.
It's grieving for the times that were, the old ways.

My tears come, but they go and I get on with something else.
I guess I am learning to adapt to the new ways, but it is a big change and we always wish we could be what we used to be.

I got a lot of nausea, especially in the first few months. Not terribly bad, but unpleasant, which came and went randomly. It bothers me hardly at all now.
I don't know if you would find this idea suitable for you....
@Jemima37 and we are all so different... but I found that very often if I had the smallest few sips of brandy the nausea went! I don't honestly know how that worked, but it would often stimulate my appetite too in a nice way.

I was alcohol-sensitive then as well, in that I had a stronger reaction to it but that small amount of brandy (couldn't tolerate anything else) helped with nausea and appetite. (weird me!)

Your hubby and family sound really decent. Blessings to you all for Christmas.

 

[Wolfcub]

How are you doing @Jemima37 ?
I hope you are okay.

 

[Mel9]

I get times of that grieving too. It hits me out of the blue sometimes. I'll have a little meltdown.
It's grieving for the times that were, the old ways.

My tears come, but they go and I get on with something else.
I guess I am learning to adapt to the new ways, but it is a big change and we always wish we could be what we used to be.

I got a lot of nausea, especially in the first few months. Not terribly bad, but unpleasant, which came and went randomly. It bothers me hardly at all now.
I don't know if you would find this idea suitable for you....
@Jemima37 and we are all so different... but I found that very often if I had the smallest few sips of brandy the nausea went! I don't honestly know how that worked, but it would often stimulate my appetite too in a nice way.

I was alcohol-sensitive then as well, in that I had a stronger reaction to it but that small amount of brandy (couldn't tolerate anything else) helped with nausea and appetite. (weird me!)

Your hubby and family sound really decent. Blessings to you all for Christmas.

My doctor prescribed Ondansetron wafers (8 mg) for nausea.
It’s like Magic!

 

[jesse's mom]

Hi @Jemima37 , just wondering how you are doing... Hope all is well with you!

 

[Jemima37]

Thank you all, sorry I've not been around. I've been taking time out to rest and recover so far this

Mini update. I'm back showering and hair washing. Which is great. 2 hair washes a week and 3 or 4 showers, although I've had one every morning this week so far as the house has been warm. I'm managing to help a little at home but still not out and about but I'm pacing myself, outside can wait until I'm stronger. I did go in my garden last weekend and saw my rabbit, fed him. Felt fresh air. How bad is it I hadn't been outside in 6 months. Jeez. I'm embarrassed to admit that but cfs and a nervous breakdown is no joke.

Thank you all for your kind support last year when my world fell apart. I'm a work in progress but I'm trying to improve things slowly. My husband and children are so happy and we are much closer for all weve got through together. Thank you all for being there too. Christmas went ok but I had to rest a lot, so thank you all for advice regarding that fear I had too. It wasnt a great day for me, it didnt feel like Christmas but I hid it well. The kids said it was an amazing day and they were so happy so that made my day. My husband bought me an eternity ring which made my emotions rocket lol. We celebrate 20 years together next week and 18 years of marriage in June, he's my rock. Not many men would stick around and bed bath their wife. I'm so lucky.

Love to you all.

Jem xxxx

 

[i-lava-u]

So nice for you to post such a lovely worded update. I am very happy to hear you have had some bits of improvement! That is wonderful news. It sounds like you have a great family.