How do you manage at Christmas?

[Jemima37]

Last year I had severe CFS symptoms. I'd had a very bad year bed ridden with the CFS which became more severe after a year of panic attacks and debilitating anxiety began. By last Christmas I was full of guilt and fearing Christmas day. I'd have a panic attack at the thought of the day. I had zero excitement and it honestly didn't feel like Christmas to me.

I kept a brave face and smile on for my children. I'd been more crashy for a few days before so my hair was greasy, I couldrn wear make up, but I washed, dressed and lay on my bed all day. I had strong anxiety and overwhelm all day fearing I'd let my children down. They said it was a great day. We opened all the gifts in our bedroom and we had a second tree upstairs . The kids ate dinner with hubby around the table, that was hard that I couldn't be down there with them. In the evening we did cheese night upstairs and played games.

I couldn't help but feel so much guilt it was not our normal christmas. I'd usually be around that table, I'd be sat downstairs with them all day and helping hubby cook. It really was the worst Christmas for me due to guilt and fear.

I've had a better year than last. Last year I barely went downstairs I was so unwell. Now I go down several times a day to do 10 minutes of chores, cooking etc but rest on my bed in between. If I stand any longer my heart races and I go hot and feel I will pass out. I have to lie down rest. Hubby still does most if the evening meals, I do 1 a week maybe but I cook for myself during the day as I'm alone. Huge change as I was eating sandwiches he wrapped for me, in my bedroom during the day. I still dont get out but last year I couldn't do any chores and even socialising with my family took it out of me so I had to rest a lot. I have made progress but still a long way to go and still have crash weeks, but daily I live with the fatigue and inability to function for more than 10 minutes max.

Anyway, I've been looking forward to Christmas a little this year but yesterday my daughter asked if we would be opening gifts downstairs this year. I honestly didnt know what to say so I said well we will see how I am on the day. She said she didnt mind if it was downstairs but she would like that tradition again this year, which is completely understandable. Just that little talk made me feel anxiety again for Christmas. They'll be eating at the table again and I will be resting up in my room. I may have to ask to be able to rest. Even worse what if it's a crash day like last year when it was 1 long crash. Argh the guilt and anxiety is unreal.

Any advice appreciated. My children are 17, 15 and 14. All eey understanding kids but of course they miss their mum spending christmas the way she always did I'm not where I was last year but I still can't do all the traditions I did prior to this time with health issues.

Jem.

 

[Plum]

I do not have children so I cannot imagine how difficult this is for you. But I did grow up with a sick Mum. The only thing I really cared about was that she spent time with me. Even if I sat on the floor while she was in bed.

I am in a similar situation to you energy wise but there is only myself and my partner. Christmas stopped feeling like Christmas ages ago. I do things like online shopping and cooking things in advance and freezing it for the day. We also don't do traditional things. It's more about having time together and a nice meal. My partner eats with me in my room on special occasions if I can't sit at the table.

Reading your post I wondered how it would be to have Christmas in your room with your family - like opening presents and having a meal... Or could you lie on the sofa and then everyone sits near you etc. I also wondered if you could make new traditions together which takes the stress out of the day. For example we sometimes have more of a buffet style meal which is easier to get a plate when we're hungry. Roasts are a lot of effort so sometimes we make simpler things that we like and can eat for a few days.

 

[Wolfcub]

I remember how worried you were last Christmas @Jemima37 I am so glad that worked out happily for everyone, and didn't over-stress you in the end.

It's good to hear how you have improved quite a bit during this last year. I am so pleased to hear that.

The lying on the sofa idea that @Plum mentioned sounds like a pretty friendly option. Then you're there, but doing as much resting as you can....unless talking, listening to music or TV, or interacting even from a resting position, has a bad effect on you?

Just for them all to see your smiling face as you open your gifts, even if you can't manage the full day, and need to go back to bed at some point,

Perhaps preparation may help also. If for instance you managed to plan more rest in the week before? And not be tempted to get on with household things. There might be some tasks you can easily do, just to help out, that don't push you, but maybe try to avoid getting caught up in that "Christmas rush" feeling?

 

[Jemima37]

I remember how worried you were last Christmas @Jemima37 I am so glad that worked out happily for everyone, and didn't over-stress you in the end.

It's good to hear how you have improved quite a bit during this last year. I am so pleased to hear that.

The lying on the sofa idea that @Plum mentioned sounds like a pretty friendly option. Then you're there, but doing as much resting as you can....unless talking, listening to music or TV, or interacting even from a resting position, has a bad effect on you?

Just for them all to see your smiling face as you open your gifts, even if you can't manage the full day, and need to go back to bed at some point,

Perhaps preparation may help also. If for instance you managed to plan more rest in the week before? And not be tempted to get on with household things. There might be some tasks you can easily do, just to help out, that don't push you, but maybe try to avoid getting caught up in that "Christmas rush" feeling?

Thank you so much for your kind reply.

It's just first thing in the morning I'm not sure I'd be well enough ir able to get downstairs ans I get so anxious if my cfs is bad at times and I hate my kids to see that. I guess my bedroom has become my safe place do the thought of being in the living room is quite daunting even if resting. I bet I sound so silly.

 

[jesse's mom]

HI @Jemima37 I am so glad you had a better year! I did too!

This Thanksgiving I cooked the side dishes one per day for a few days and we had a very small group on Thanksgiving day. I plan to do this on Christmas this year. I am keeping things very simple.

I have had years of being bedridden and not able to sit at the table for meals, it is so hard. It feels so stressful for me to have to spend so much time in a sick bed with my youngest (16 years old) not remembering me being well.

I do not think you are sounding silly in the least little bit.

The visiting too much causes me to crash and the stress of not being able to visit is just awful. The guilt about children is such a huge weight also!

Again I am glad you are a little better. Wishing you all the best!

 

[Wolfcub]

I guess my bedroom has become my safe place do the thought of being in the living room is quite daunting even if resting. I bet I sound so silly.

No you don't. I remember when I was horribly bad, last year, and had my little "safe place" (not the bedroom as I felt too awfully restless to lie in bed) But downstairs in my little "den" room, where I could move a bit if I needed to, but could mostly rest, and I had access to kitchen, and a fire if I was cold.
Even the thought of being anywhere else....the car....another room....someone else's house (particularly that) could start to make me feel queasy.

Early in the morning....yes I empathise. Jumping out of bed, and getting straight on with things is basically a healthy fit person's way to start the day!
If someone isn't feeling too good, they need a slower start.
I guess a possible option for that is -if you can -get a really good earlier night so you will have more time to get it together gently a.m. You may even wake up 2 hours before everyone else!

 

[Jyoti]

@Jemima37 -- I have to second @Wolfcub 's response. Of course you don't sound silly at all to us. I certainly understand the need to insulate myself from all sorts of energy and activity. Not just the busy-ness, which can be lovely if you are in a good state and awful when you are not, not just the noises and sights and smells which can be too much at times, but the sense of being exposed in the world when you do not have the wherewithal to hold your own. I know it well... Sometimes being in my living room with the kids, even doing very very little feels like I am trying to protect my vital self from assault. It doesn't add up mentally, but it is how it feels sometimes for me.

I too am glad you have had a better year. As @jesse's mom has recently told us, her journey has had an overall upward trajectory this last year, which is encouraging for all, I hope. It is for me. And your increasing capacities are exciting, even if somewhat fragile and needing to be approached with respect and caution.

Christmas is so hard and the expectations are the worst. Particularly when you are in no position to meet your own in that regard. The kids WILL be disappointed at Christmas in my experience. Not always and not every one but some of that is inevitable. We can only do what we can do. So be kind to yourself as you can. You are not wanting this, you didn't ask for it and you are doing your very best. No one can do more. I sometimes think that we are all in the advanced self-forgiveness course. The opportunities to work on that seem endless.

I also wanted to thank you for sharing your worries because they have already helped two people I know. One is an old friend so devastated by treatment-resistant depression that she can barely move. She said to me almost exactly what you did the other day, weeping about letting her kids down, wanting so much to 'do' Christmas and yet completely unable at the moment. I think sharing a little of your story gave her perspective and a sense that there are many of us who struggle to be who we want to be for our loved ones.

And then my daughter, who is always worried about me and often disappointed by what I cannot be/do on her behalf-- I also shared with her some of what you are dealing with and she realized that even in light of all the losses she has suffered through my illness, it could be much harder than it is for us.

So I will conclude this overlong response with gratitude to you @Jemima37. You have, in reaching out and sharing, uplifted some others you will never know. And so I will just hope that that kindness gets forwarded to you in great measure and that your Christmas is full of love even if it isn't 'perfect.'

 

[southwestforests]

How do I manage at Christmas?
Having no children and no spouse I can mostly ignore Christmas.
Which got started back when I worked retail.

 

[Wolfcub]

I actually liked Christmas best when it was just me and my dog.....walk in the woods, carols on the radio....nice food, quiet evenings, candles lit. Looked "lonely" from the outside but I loved it.

 

[Jemima37]

Thank you all. Sorry for my late response. Yesterday I crashed after this week a little each day finishing the tree and trying to help at home more. Big mistake. I woke yesterday dizzy, feeling faint everytime I had to walk to the bathroom, severe nausea all day and couldn't eat, off my food completely, woozy and generally weak. Slightly different type of crash for me as it doesnt usually make me lose my appetite or make my obs flare up. I'm still not my best today, feeling sickly, off food and woozy but I did push myself to wash my hair this morning. I only slept 1am till 6.20am too. My sleep is terrible of late.

Thank you for your kind words and advice. I've read them all and they're so reassuring. I have come a long way from last year. I'm still struggling to go out due to my daily baseline symptoms and anxiety on top, my crashes had become less frequent. I'd feel fatigued daily, some flare ups of symptoms on top here and there but I'd learned to manage it better but after some stressors recently with my son struggling in school as he lost his friendship group as they'd turned to drugs and he didnt want to be part of that, he started struggling to attend school due to them being really horrible to him. Then he fractured his arm on his paper round and they picked pm him for wearing a long. It has been a tough time for him and it all became extremely overwhelming along with Christmas coming up and the last 6 weeks my crashes became more frequent, every week lasting 2 days and 1 week it lasted 6 days. Very frustrating when crashes were just every month or 2. Never mind hopefully I will get back to less frequent crashes soon.

Jyoti, thank you so much. It's nice to know I've helped others with my honestly. I am always so honest, I wear my heart on my sleeve about my struggles with cfs and anxiety/panic and how its debilitated my life. I'm so glad it helped and I really do wish you all the best for Christmas and your recovery. I feel reassured if anyone posts about their struggles with physical health or severe anxiety, I definitely feel less alone and less ashamed.

Plum, thank you for your kind words and suggestions too. I hope christmas goes well for your also.

Jessie's mom and wolf cub, thank you. You're always both so kind. Thank you for making me feel I'm 'normal and don't sound silly as I always worry I will be judged. Recently I posted here about struggling to attend appointments and my smear test being a year overdue, absolutely terrified and feeling scared I was neglecting myself, worried at 40 it means I will have cancer as it's been 4 years since I last had one etc and so many of you were so kind and reassured me I'd be ok and I didnt sound stupid at all. That was really hard to post as I thought people would think i was a complete nut job for not being able to attend basic appointments haha. You all have a nice way of measuring me and making me feel less silly and ashamed.

Hopefully Christmas will work out even if I don have to rest upstairs but the grieving we do for all the things weve lost. All the traditions we did etc make this time of year very hard dont they.

Love to you all
Jem xoxo

 

[Wolfcub]

Yesterday I crashed after this week a little each day finishing the tree and trying to help at home more. Big mistake. I woke yesterday dizzy, feeling faint everytime I had to walk to the bathroom, severe nausea all day and couldn't eat, off my food completely, woozy and generally weak. Slightly different type of crash for me as it doesnt usually make me lose my appetite or make my obs flare up. I'm still not my best today, feeling sickly, off food and woozy but I did push myself to wash my hair this morning. I only slept 1am till 6.20am too. My sleep is terrible of late.

The nasty little devils called Crashes have all sorts of mean tricks up their sleeves !
The only way is through it. Rest....and wait it out. Yes I know....easier said than done.
I have always found fresh ginger very good for the nausea. It makes a big difference for me, as does a tiny drop of brandy (maybe a teaspoonful or two) when feeling bad. But I don't know if that would work for you or not.

Yes I think holiday times always bring up a whole lot of feelings.

I hope your son will be okay and manage to work things out.

 

[jesse's mom]

@Jemima37 Sending kind thoughts to you, your son, and whole family. Just making the most of what we have and seeing the small blessings can be so hard. Seeing the small things that are going right, like your son not joining into the drug scene because of peer pressure is a blessing although it was so painful to lose his group of friends.

The same thing happened with my daughter a few years ago, she is making better friends finally 3 years later. Today we spent some time looking for her first car! She is a great kid! She has not had the easiest life, she does not remember a time when I was well and fit. She says it has made her more responsible and caring than many of her peers.

I am so glad you are posting and allowing us in and try to help you feel a little better!

 

[Jemima37]

Thank you both so much.

My son was pressured by friends an dried cannabis. When I found out it broke my heart and I was so angry I crashed mentally and physically for 2 months over the summer. Plus I'd just lost my uncle, my rabbit and found tumours on both my dogs on the same day. I then turned 40 in september and found it the hardest day accepting it. All too much stress and I've only in the last 6 weeks started to improve but now I'm getting a couple of crashes a week but on the days I'm not crashed I can do some chores and rest in between. My issue is I do too much then crash hard for 2 days. But at least my anxiety and cfs is a bit better than over the summer.

My son tried it then we talked after he was caught and he admitted his friends pressured him and now hes told them he doesn't want to do it again theyve taken to cutting him off and bullying him. Hes a sensitive boy. Weve spoken to the school and the head teacher praised rhys for his bravery and told us we should be so proud as hes one of the nicest well mannered young men the school has. We are so proud of him and it's very brave of him. Its just left him with nonfejrnds ad these boys were his close friends since he was 3. Hes been heart broken and wishes drugs didnt change them all. These boys smoke cannabis in schoo and are going into exams high. Its awful. Thank goodness my son wanted better for himself. He only has until thr summer after his exams then hes leaving and onto college for a new chapter. We are just trying to support him best we can as hes feeling very alone in school and many times hes tried to stay home. It's been hard pushing him to go when hes anxious going. Poor love.

I still feel yuk today. My stomach just feels bubbly like IBS feeling, no appetite and can't eat really, less nausea today but off my food, when I stand up I feel I need to lie down again and just generally weak and drained all over. Not as bad as yesterday but still not great. A bit of a different type of crash but I guess its just being sneaky.

Thank you I shall try ginger in some tea. I love fresh ginger.

Thank you both for allowing me to talk about my son. You're so kind. Lovely news about your daughters car Jessie's mom. My son is learning to drive soon, my eldest as he started his first full time job this week. So proud of him for getting the job out of all the people that went for it. Lovely seeing them grow up and be happy isnt it.

Thanks again ladies xoxo

 

[Rebeccare]

I have come a long way from last year.

You have!! I remember your post about Christmas last year. It was clear how awful you felt, both physically and emotionally. Although you still have sadness, guilt, and anxiety about this coming Christmas, it seems from what you're writing that you're not quite as overwhelmed by those feelings this year, and are able to manage them a bit better. I'm sure it helps that last Christmas turned out to be a very pleasant day! You may not be able to keep up all of your old traditions, but it sounds like you'll be able to do some things with your family, and perhaps you'll even make some new traditions as well.

Your children all sound like they are intelligent, understanding, and resilient. I am confident that they will appreciate whatever you are able to do on Christmas day, and will be understanding of what you are not able to do.

I hope that, even as you experience emotional and physical ups and downs in the run-up to Christmas, you can continue to appreciate your progress over the past year.

Thank you I shall try ginger in some tea. I love fresh ginger.

That sounds like a wonderful idea! I think I might make myself a cup as well.