Christmas worries (again)

[Jemima37]

I'm not as bed ridden as last year as I'm not as unwell as then but I still have to rest alot and I feel most comfortable lying propped up on my bed. I get up hourly to do 10 minutes of chores but rest inbetween. I cant stay upright for long periods as my heart races, my feet get hot, I feel faint or woozy headed which triggers bad panic and anxiety, my BP goes up not down but my GP says it does sound very like Pots after speakng to her recently. I just cant face the tests as I cant stand long enough to do them.

Anyway, last christmas I was bed ridden for months and it was awful. I still can't sit upright to eat and I eat on my bed propped up with a tray as its where my body is most comfortable. I'd feel awful sat upright at a table. I'm worrying about Christmas day though as I cant sit upright at the table with my family. Anyone else in this situation?

It's the same for opening presents. Last year we didnt open them around the tree, we had a 2nd tree in our bedroom and we did them in there and the kids were great. First thing in the morning I could not go downstairs to the living room so I'm dreading asking the kids if it's ok if we open them up here. I feel a terrible mum as they've been asking if we are doing them downstairs this year. My kids are 17, 15 and 14 and so understanding. I just hoped this hear I could be better enough to do that and although I've made huge progress I beat myself up it's not enough and sitting upright in my living room or dining table is just too much and causes me extreme anxiety when my cfs/pots symptoms kick in. Stupid body!! I get breathless, fast heart, feel woozy headed, arm feet and awful if I'm upright for too long walking about and when sitting upright too long I feel similar minus the breathless feeling.

I'm anxious about Christmas incase I'm crashed or incase it's a bad anxiety day like last year was. I have an anxiety disorder but its better than last Christmas. I'm just putting so much pressure on myself that I cant be around the house all day like a normal person. I'm even stressing about my shower and hair wasn before Christmas incase I'm crashed and cant do it lol

I will be walking about Christmas day, popping to see my children downstairs or in their bedrooms no doubt chilling out, and do my hourly trip down to the kitchen, which I have to remind myself compared to last year is major progress. I couldn't even step downstairs last year.

I know I've posted about this before but I wondered if anyone else has been in this situation in Regards to needing rest, unable to dine with their family etc? I got through it last year but it didn't feel like Christmas at all and it was awful for me even though the kids said they were happy. I had to rest a lot and I felt bad for doing that. I didn't eat with them and I hated that. I feel angry at myself I cant sit at the table or sit by the tree and I have blocked this all out the last 2 weeks but today it's hit me and I've felt stressed about it all. I just want this year to feel a little like christmas for me and I'm hoping now I can be a bit active I can achieve that and mix with my family a little during the course of the day after we've opened gifts together, even if that is upstairs by our 2nd tree.

Can anyone relate?

I also thought I'd show you my major achievements this year. I did the tree and decorations myself. I paced myself doing them over about 6 days but I'm proud because last year I couldn't even go downstairs, let alone decorate. I had a crash after doing them for a few days but I'm happy I achieved it. My family love the tree

Jem

 

[Pearshaped]

would it help to set a deck chair or somethimg similar downstairs next to the tree?
Have you asked your children if they would mind to unpack presents downstairs without you?
The thought of not being with them probably hurts you more than it hurts them(from my own experience).You could tell them to come in your room after unpacking for a"Family-hug".

 

[Jemima37]

would it help to set a deck chair or somethimg similar downstairs next to the tree?
Have you asked your children if they would mind to unpack presents downstairs without you?
The thought of not being with them probably hurts you more than it hurts them(from my own experience).You could tell them to come in your room after unpacking for a"Family-hug".

That's a great idea. Thank you. They'll fully understand but it hurts me as you understand. I hate telling them I'm not able to do things as I fear ruining atheist special occasions and traditions.

 

[wigglethemouse]

It's the same for opening presents. Last year we didnt open them around the tree, we had a 2and tree in our bedroom and we did them in there and the kids were great.

We have a second tree in our bedroom, to make it feel like Christmas for me. The kids will come and open up presents with me, if I can tolerate it.

would it help to set a deck chair or somethimg similar downstairs next to the tree?

Some people with POTS use a zero gravity chair. It didn't work for me.
https://www.amazon.co.uk/s?k=zero+gravity+chair&crid=BGKYGKGCDOZV&sprefix=zero+gravity+,aps,351&ref=nb_sb_ss_i_7_13

Anything I can do with my family on Christmas day will be considered a success. Two years ago was awful.

 

[Wolfcub]

The tree is gorgeous! It's wonderful that you could do that. It looks really beautiful.

Your family sound great, and understanding. Yet you feel you'll be letting them down if you can't function the way you would like to, if all things were ideal.
They have seen you gradually improve and probably think -oh super, Mum's getting better now!
You see, sadly only someone with ME/CFS knows what it's like.....the baby steps forward, the care we have to take, to do ordinary things that well people think nothing of....the way that sometimes we can do stuff, and sometimes we can't, and that can be unpredictable.

I see a sofa next to your tree. Would it be possible, do you think, to get something rigged up on that, with pillows, and a big soft foot-rest? And a tray for your meal? Would it be possible also for your hubby to bring the dining table into that room? So you could all be together ....and the only thing is you would be on the sofa and they would be on the dining chairs.
At least they would understand I'm sure, why you can't sit upright at the table.

And why not do the same thing as last year and have the morning present-opening ceremony in your room, with fairy lights around, or scented candles, and lots of hot chocolate or something nice like that...? And Christmas carols on low volume (Carols from King's College Cambridge....they are the best!)
That sounds so cozy to me and magical.

I know you want things to just "be normal", the way it always used to be, the traditions etc. But you have to give yourself a break. You have done so very well over the past year. I congratulate you on your progress. May it continue, small steps at a time.

 

[Jemima37]

The tree is gorgeous! It's wonderful that you could do that. It looks really beautiful.

Your family sound great, and understanding. Yet you feel you'll be letting them down if you can't function the way you would like to, if all things were ideal.
They have seen you gradually improve and probably think -oh super, Mum's getting better now!
You see, sadly only someone with ME/CFS knows what it's like.....the baby steps forward, the care we have to take, to do ordinary things that well people think nothing of....the way that sometimes we can do stuff, and sometimes we can't, and that can be unpredictable.

I see a sofa next to your tree. Would it be possible, do you think, to get something rigged up on that, with pillows, and a big soft foot-rest? And a tray for your meal? Would it be possible also for your hubby to bring the dining table into that room? So you could all be together ....and the only thing is you would be on the sofa and they would be on the dining chairs.
At least they would understand I'm sure, why you can't sit upright at the table.

And why not do the same thing as last year and have the morning present-opening ceremony in your room, with fairy lights around, or scented candles, and lots of hot chocolate or something nice like that...? And Christmas carols on low volume (Carols from King's College Cambridge....they are the best!)
That sounds so cozy to me and magical.

I know you want things to just "be normal", the way it always used to be, the traditions etc. But you have to give yourself a break. You have done so very well over the past year. I congratulate you on your progress. May it continue, small steps at a time.

Thank you wolf cub. Your reply was so comforting, as always. Thank you

I will be honest since my cfs hit last year as bad as it did I had some kind of mental health breakdown. 12 hour panic attacks and as a result of being in such a severe cfs crash with extreme anxiety I became bedroom ridden. It took me a year to get the panic under control and my attacks have gone from 12 hours every single day to maybe 1 a month or longer. I still have general anxiety every day but it's not always severe. It rises more when its times like this and I feel under pressure. What has happened though is my bedroom has become the safe place I guess. I can now this last 8 months walk around downstairs, pop in the garden, do 10 minutes of chores, pop to chat to my kids ans gave them sit with me for hours and chat which kazt year was all so hard to do so poorly. Once I hit 10 minutes though symptoms kick in and I need rest which is why my gp thinks its a mix of POTs abs cfs based on symptoms I get when upright for 10 minutes. So yes I still have anxiety definitely but it flares up due to those scary symptoms I get when upright for 10 minutes or so. It's scary and it's why I only feel safe resting between activities in my bedroom propped up on my bed. I love my living room but it's become a place I struggle to rest in because I cant lie down propped up and also I guess because the safe place has become my room.

It's hard admittiing that and I feel ashamed and embarrassed. I probably sound a loon. I feel a terrible mum I cant push through that and just find a way to lie propped up in living room and anxiety not kick in. I've tried recently sitting in the living room in the evenings and after 10 minutes anxiety kicks in and I struggle and that anxiety pulls me back to my room. It can even flare panic. Very strange. I had this happen when cfs first hit in 2016 but by 2017 I was in my living room all day fine and it helped my depression not being in my bedroom as I felt normal but Sunday last year the cfs and anxiety has been the worst ever. Now its become a place I feel very anxious in and only frrl comfortable resting in my room which is open to my family to enter to sit with me but I hate that they have to do that for me.

I've made huge progress this year. I've done from being bedridden and not being able to go downstairs, unable to shower etc and now incan but I have to really pace myself. I've worked very hard on my anxiety and depression too but it can still flare at stressful times or if bad events happen, and it's there generally every day to different severities.

Sorry this got mint. thank you for your lovely reply and thank you for complimenting my tree. It's so nice to have people who understand and make my issues seem normal. My family are so supportive but it does help talking to those who get it.

Jem xoxo

 

[Wolfcub]

Jem, I understand about the anxiety.
I don't have "generalised" anxiety myself. When I'm not crashed, my mind state is good. But as soon as the symptoms start they seem to bring in this adrenaline-surge effect which makes a state like anxiety. It's awful. Methods to cope with anxiety, as such, don't even help when that happens, and the only thing that does is when the crash starts to pass off.
I have that today and the crash came with no warning. It's horrible. I was doing OK the last few weeks...

I don't even have POTS but I can imagine that triggering bad anxiety.

I know what you mean about your safe space too. It seems the wisest thing to do is accept that you must do things at your own pace, and what is do-able for you, and if it isn't, then you really cannot help it. If you feel better in your room, then that sounds like it will be the best solution.
I know it's a disappointing feeling. See how things go. My kind thoughts to you and family for Christmas

 

[wigglethemouse]

Do you have a HR monitor/watch you use to pace. It was a real eye opener for me. It might explain why you can't be upright for long.

 

[Pearshaped]

Yes BP and HR monitor @Jemima37
(if you have the strength,keep a daily diary where you write down BP&HR in the morning when still lying and at the same time every day when standing to go to the bathroom-this will help your GP and yourself as @wigglethemouse has mentioned)You will feel less guilty once you can proof things in your body are upside down.
Anxiety is a consequence of POTS and OH(Im not a professional but I bet you do not only have pots)

 

[Jemima37]

Yes BP and HR monitor @Jemima37
(if you have the strength,keep a daily diary where you write down BP&HR in the morning when still lying and at the same time every day when standing to go to the bathroom-this will help your GP and yourself as @wigglethemouse has mentioned)You will feel less guilty once you can proof things in your body are upside down.
Anxiety is a consequence of POTS and OH(Im not a professional but I bet you do not only have pots)

Thank you.

I shall do that for when I next see my GP.

What makes you say I dont only have POTs? What else could it be? Now I'm anxious lol What is OH?

 

[Jemima37]

Do you have a HR monitor/watch you use to pace. It was a real eye opener for me. It might explain why you can't be upright for long.

I used to yes but it became a bit of an obsession checking it and fed my anxiety. Now I just know my limit when my heart starts and I feel I need to rest again. Which I've found better than looking at the monitor as thay scared me more.

 

[Jemima37]

Jem, I understand about the anxiety.
I don't have "generalised" anxiety myself. When I'm not crashed, my mind state is good. But as soon as the symptoms start they seem to bring in this adrenaline-surge effect which makes a state like anxiety. It's awful. Methods to cope with anxiety, as such, don't even help when that happens, and the only thing that does is when the crash starts to pass off.
I have that today and the crash came with no warning. It's horrible. I was doing OK the last few weeks...

I don't even have POTS but I can imagine that triggering bad anxiety.

I know what you mean about your safe space too. It seems the wisest thing to do is accept that you must do things at your own pace, and what is do-able for you, and if it isn't, then you really cannot help it. If you feel better in your room, then that sounds like it will be the best solution.
I know it's a disappointing feeling. See how things go. My kind thoughts to you and family for Christmas

Thank you wolf cub. I hope your crash passes soon. Thank you for replying to me. Merry Christmas xoxo

 

[Rufous McKinney]

Can anyone relate?

Your tree and whole shebang there is quite beautiful, very elegant, i love it. Good for you. Its a huge accomplishment.

I'm of the opinion that kids and young people, would show up ANYWHERE in the house, should there be presents and packages to open. They will love it, regardless.

I'm trying NOT to be too down on the holiday scene. But simply having a helper come here yesterday for three hours, she helped do laundry, cooked some food. We chatted. My throat goes off when I talk or chat..its very painful. Apparently, I"m to have no further verbal opinions in this life (suggested message).

I was entirely wiped out, exhausted when she left. She and her husband are coming here on Xmas Day. We agreed. And i can't do any of it. Why did I agree? Can't make food for people.

We have no tree, but I did put out a few little decorations that help. I sent no cards. I used to love xmas card sending..because its just a nice way to keep in touch with people when otherwise you rarely see them.

Bought nothing. Not been in a store, really. It would be nice to have a few little gifts to open. The many things we have been asked to put aside, to give that up...to let that go, too.

 

[Rufous McKinney]

It's hard admittiing that and I feel ashamed and embarrassed

Gosh, its so understandable that you feel this way.

This illness is so all-body-mind- encompassing. You've done tremendous work, and made considerable progress!! Hug yourself, as if your best friend in the world, has just told you the same story....

The Sickness Behavior, its powerful. Your room is the back of the cave, where you feel the safest.

When my "personal assistant" came over yesterday, I was totally not up for it in any way. (she comes on Friday for 3 hours). Rather quickly, I felt overwhelmed, unable to direct her as to what to do to help me, as even THAT takes energy. And she is a masseuse- and I don't want a massage, either, as those make me feel sick after. So nice.

The body gets anxious really quickly here, also. So just the presence of others, having to try to be a little functional, was entirely overwhelming. THere is some tremendous sensory overload going on here. LIke my circuits are overwhelmed.

 

[Rufous McKinney]

Here is the latest on Sickness Behavior- ours is powerful.....as strong as when they inject people with LPS and make them feel very sick on purpose.

https://www.sciencedirect.com/science/article/pii/S2666354619300298#bib42

Patients with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and chronic pain report similar level of sickness behavior as individuals injected with bacterial endotoxin at peak inflammation

.....so what to do about this......??


I've only found one thing, which seems to consistently reduce the intensity of Sickness Behavior, and gives me a bit of a break from what is otherwise often relentless feelings of nausea, dull depreciating pain, anhedonia, and anxious repetitive thoughts-

 

[Pearshaped]

@Jemima37 I think you have probably POTS with NMH(Neurally mediated hypotension) Or OH(Orthostatic hypotension) when You have OH your BP starts dropping continuously upon standing(normal would be BP drops a bit upon standing and within a minute goes up again and stbilizes.)
When you have NMH your BP starts to drop continuously after standing for a few minutes.With Pots you have mainly a racing heart,but BP would not drop continuously.This is why it would be important to measure it.there is medication for that.(but works not for all to be honest)

 

[YippeeKi YOW !!]

I also thought I'd show you my major achievements this year. I did the tree and decorations myself. I paced myself doing them over about 6 days but I'm proud because last year I couldn't even go downstairs, let alone decorate. I had a crash after doing them for a few days but I'm happy I achieved it. My family love the tree

It's a beautiful tree, and a truly impressive achievement .

I haven't been able to put up a tree for 7 years now, and I feel like a failure at everything in life.

It doesnt help that DB (my husband's nickname, long story, boring, sparing ya'll) managed to mangle, mash, crush, and generally destroy all my CHristmas tree ornaments when we moved, lights, stings of brightly colord beads, mementos from old friends and family members, more than a few no longer here, and things that have been part of the family for several generations or more. Men.

Then he lost the remains. No idea where they are.

It's a good thing I really love him, or he'd have been wearing a nicely fitted pair of cement pajamas years ago ....

You're tree is truly glorious !!!

 

[Rufous McKinney]

I haven't been able to put up a tree for 7 years now, and I feel like a failure at everything in life.

I swore the good ornaments didn't burn up. I was sure of it. As we;d not had a tree, already, for the last few years. So the good glass ornaments are supposed to be in storage, not in the funky shed that burned up.

So it was like 2 years later i entirely realize those ornaments are gone. Only the lousy ones remain, in their "separate box".

its an odd thing. I can tell you that when you lose many many things, something about losing the Ornaments is particularly symbolically hard to Process.

I don't know if Xmas will ever come back in that way. Its not about things, or presents, or seeing people. This illness took: seeing people.

 

[Rufous McKinney]

It's a good thing I really love him,

That is a good thing!

 

[Wolfcub]

It's a good thing I really love him, or he'd have been wearing a nicely fitted pair of cement pajamas years ago ....

Oh Yippee....that made me burst out laughing Thank you for that.

Everyone....I don't even have a tree at all. I never ever bought one. I used to go up to a HUGE conifer woods, and saw the top off any big Spruce that loggers had felled and just left there...then race with it to the car, my dog running beside me.
It's sad, but I can no longer do that, but the happy memory is still with me. I remember how tiring it was to put up and decorate a tree, so @Jemima37 what you have managed to do is just splendid