Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Did You Have Yourself a Crashy Little Christmas?

Discussion in 'Phoenix Rising Articles' started by Jody, Dec 27, 2014.

  1. Jody

    Jody Senior Member

    Messages:
    4,333
    Likes:
    1,000
    Canada
    Jody submitted a new blog post:

    Did You Have Yourself a Crashy Little Christmas?

    Jody Smith may have dodged a holiday bullet this year. She's hoping. Only time will tell. How did you fare?

    [​IMG]

    How have you survived the holiday season? I've been thinking of you in the Phoenix Rising community all week. I wanted to write something before Christmas but ... I thought I was in for a crash, as old symptoms started reappearing in mid-December.

    I had been doing really well for some months -- hadn't needed my naturopath since August -- and then I guess it was the creeping nearer of Christmas that was the final straw.

    I started having trouble finding my thoughts, and when I could find them, finishing them. The vibrating sensation that for years was ever-present, has been mostly gone for a long time. But it began again two weeks ago. My face would go numb. My fingers became clunky and would not do my bidding.

    And the tiredness that I still feel much of the time had escalated into fatigue and graduated as exhaustion once more. This was pretty scary. I never know if a setback will be temporary or whether they are moving back in to stay. I know you know what I'm talking about.

    It had been so long since I'd had to really micromanage symptoms that at first I couldn't remember how to do it. I could hardly remember anything those couple of weeks, so why would I be able to recall that, right?

    But it came back to me. Some of the small actions (and inactions) taken frequently resurfaced in my shaky brain and I began to recreate the new old habit of going to bed in the afternoon whether I wanted to or not. I'd start out with a book and often end up falling asleep over its pages. So much the better.

    I work online, and often spend many hours in front of my computer without a problem. But now, I was needing to get away from it. I'd take a break after an hour or two. Initially it was after two hours when my cognition was fading, my face was tingling and my hands were vibrating.

    Oops, left that too long.

    What worked best was to take a break after an hour, for about half an hour. Not that I had the proper sense and self-discipline to do that a lot of the time. I never had liked going through that routine but at one time it was my way of life. Now I was out of practice, and still willfully did not want to comply.

    But when the body says, It's that or fall down for weeks or months ... compliance is in order.

    The first day it didn't seem to do much. It took the edge off the impending disintegration. I didn't feel better but I did feel ... not quite so awful.

    After three or four days though, I started the day feeling a bit more normal, a bit less seasick, and didn't start to melt quite so quickly, easily or intensely. So, good. Keep doing this. It had been a discarded routine for a few years but still an oldie and a goodie that was once again thankfully doing the trick.

    We're big on Christmas at our house. We have streamlined over the years due to sickness, and also in part due to the fact that our children are not little anymore.

    We had Christmas Day amongst the three of us, me and my husband Alan and our son Jesse who also has ME/CFS. We had a simple breakfast, opened a few gifts and had a relatively quiet day.

    This year we skyped with our daughter Sarah, her husband Jordan and baby Piper, who are in Manitoba, a province away. It was my first Skype. Jesse has done it before and he guided us through it. It was great fun.

    On Boxing Day our local kids, Rachel and Todd, and Duncan and Kelly, came for dinner and gifts. We ordered pizza and used paper plates which made for a very easy night. We draw names so each of us is only giving to one person, which also simplifies things considerably.

    That evening we opened gifts, and talked and laughed, took photos to put online for our family members who live far away ... and said goodnight to our guests at 9 p.m.

    The three of us sat together for another hour or so, the guys doing games online and I quietly knitted while we had something on TV in the background.

    It was great. Great, because we'd spent time with people we love. And great because we have long ago accepted that less is more, and not becoming fried is better than trying to do more than we are able.

    I hope that you had some pleasure and haven't hurt yourself in the process. If it wasn't any good, at least it is done for another year.

    How did it all go for you?


    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

    [​IMG]
    Continue reading the Original Blog Post
     
    Last edited: Dec 27, 2014
    ahmo, Raines, merylg and 1 other person like this.
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,895
    Likes:
    12,702
    Sth Australia
    Your post just brought me attention that today, 3 days after Xmas, I cant remember now how I was the day after.. did I have a little crash or not? I guess the memory issues is one way to make symptoms vanish!

    I had a bad emotional lead up to Xmas this year.. having trouble with family and having trouble finding a suitable way to get there which would be okay for my ME and put me less at risk of a crash. Ending up able to take the precautions I needed eg not be there too long, Ive got throu it well.

    I guess Im still feeling a little more run down then I usually are, 3 days after Xmas but its not something Im dwelling on at all. Rather not think of how tired I are.
     
    merylg likes this.
  3. Jody

    Jody Senior Member

    Messages:
    4,333
    Likes:
    1,000
    Canada
    Taniaaust1,

    Maybe you had the right idea, to not think about it for awhile yet.:) Keep resting.
     
  4. Revel

    Revel Senior Member

    Messages:
    406
    Likes:
    2,447
    "Happy Christmas"? More like "Cr*ppy Christmas"!

    I spent it alone, wrapped in a blanket on the couch, while my partner went off to spend the day with his ex-wife and her new husband because I am such poor company right now (plus I wasn't well enough to cook for him o_O).

    Glad you fared better this year, @Jody!
     
    Last edited: Dec 28, 2014
  5. eafw

    eafw Senior Member

    Messages:
    816
    Likes:
    3,397
    UK
    I never liked Xmas even when well so am glad to be able to skive off instead of joining in with all the nonsense. A couple of nice peaceful days, neighbours away, less traffic, catch up with a few things. Added bonus for most of us in the UK has been some sunny blue skies too, which helps at this time of year.
     
  6. Jody

    Jody Senior Member

    Messages:
    4,333
    Likes:
    1,000
    Canada
    Oooh, ouch! That hurts, Revel. Sorry you had to go through that.

    Too bad he didn't stay home and cook for you. Thank goodness Christmas is over then, eh?
     
    merylg and Revel like this.
  7. Jody

    Jody Senior Member

    Messages:
    4,333
    Likes:
    1,000
    Canada
    eafw,

    I have a Jewish friend who likes and takes advantage of the less traffic and fewer crowds on a couple of days at Christmas time. I'm glad you got some sunny skies, a sunny day can lift the spirits a bit.
     
  8. meandthecat

    meandthecat Senior Member

    Messages:
    205
    Likes:
    500
    West country UK
    'It had been so long since I’d had to really micromanage symptoms that at first I couldn't remember how to do it.'

    One of my few constants seems to be the sense of 'Knowing that you don't know' or is that not knowing that you do know.
    My primary teacher was adamant that if you couldn't explain something then you didn't know it; how would he have coped with Donald R yet alone having ME.
    He wouldn't have coped because coping is about not Knowing, not having power, not being able to explain and yet still moving forward.
    As Xmas gets closer I hit overwhelm, a short visit to parents and I'm into PEM and brain-death and yet I cope.
    I would so like to 'Know' again but have to settle for being able do; even if I can't remember why.
    Seasonal greetings seem a little tame, so Jody...........Respect
     
    ahmo likes this.
  9. Jody

    Jody Senior Member

    Messages:
    4,333
    Likes:
    1,000
    Canada
    Meandthecat,

    Respect to you, this harrowing season, as well.
     
  10. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    695
    Likes:
    2,291
    Christmas can be very challenging*with severe ME*, if you are of the Christian faith and want to enjoy something away from consumerism and ownership.

    Firstly if housebound, you cannot go to church. At home on Christmas day the light is too bright, environment too noisy and you can't breathe without effort just from talking. If you are lucky to have family, and even guests coming over, how do you tolerate all the sensory input whilst being in overwhelming pain? This is not a happy occasion, sadly.

    Christmas would seem an ideal opportunity for ME sufferers who are Christians to become atheists, but sadly that would be the disease winning everything, as it always does when there's no access to medical diagnosis or treatments.
     
    hellytheelephant and Jody like this.
  11. Jody

    Jody Senior Member

    Messages:
    4,333
    Likes:
    1,000
    Canada
    Thank you, cfsfaithhopelove.:)
     
  12. Singout

    Singout

    Messages:
    83
    Likes:
    48
    Really glad this went so well for you, Jody. Compared to last year, I did much better...was able to enjoy Christmas dinner with my parents for more than 1 hour, go to church, have a few friends over for New Year's Eve. I think the slump I'm in now might be the followup, but it isn't too bad.
     
  13. npeden

    npeden NPeden, Monterey, CA

    Messages:
    71
    Likes:
    13
    Revel, I had the day alone too. Went to Imitation Game and made myself a steak. When I found out that my family was celebrating and I wasn't invited, I went off the rails. All my hidden viral symptoms arose and I am still working on getting them down.

    I had tried to participate Christmas Eve but none of my family is willing to get genetically tested. I have many GAD1 genes so the utter chaos of kids, menorrahs and blasting Christmas music really upped my glutumate. I had told my niece I would only stay a short time and she said that was fine. But by the time I was ready to go, the party was to start at 4:30 and I was there at 4:15 for which I got bawled out and then the others starting dribbling in around 5 until 6. By six I had really gone over my edge. I knew that if I stayed for the party it would be ten o'clock before I got home and I generally do not go out at night.

    So because my family does not tolerate difference, I now feel very alone. They are toxic and I won't have anything to do with them if I can help it.
     
    Revel likes this.
  14. Jody

    Jody Senior Member

    Messages:
    4,333
    Likes:
    1,000
    Canada
    Singout,

    I know what you mean. Doesn't sound too bad at all.
     

See more popular forum discussions.

Share This Page