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What to do when falling into a relapse?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Boule de feu, Feb 22, 2012.

  1. Boule de feu

    Boule de feu Senior Member

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    I knew it was going to happen.

    For weeks, I had planned all the things I needed to do before my guests would arrive. I was pretty good at it, making sure i had plenty of rest periods between each activity. However, the last days were pretty hectic (I lost control - too many things to do, not enough time) and then, they showed up (I was already too exhausted). They stayed a day and a half (40 hours) but were only here for meals and evenings (so i spent a total of 15 hours with them).

    During the day, they left for an appointment and I collapsed for 4 hours while they were gone. I thought I would never get back up on my feet. Last night, my flu symptoms were all back and this morning it felt like I had been hit by a truck. Fortunately, they left at 8 this morning and I was able to spend the whole day in bed.

    I have this dreadful feeling that I am falling into a relapse. I feel poisoned, like I have been drugged, and I have a hangover.

    Tonight, my symptoms are :

    Extreme nausea,
    severe headache,
    earache,
    burning throat with a husky voice,
    I have many cankers in my mouth,
    my upper lip is red and chapped (I probably had a fever),
    three of my fingers (right hand) have cracks,
    flushed cheeks and ears,
    electric sensation in the back of my neck,
    difficulty breathing,
    burning in my spine and my legs,
    red burning feet (can't walk)
    both breasts are inflamed and burning,
    blurred vision,
    abdominal discomfort,
    pain all over,
    too weak to do anything,
    cognitive problems.

    Just before falling into a relapse, do you feel it coming? When you do, do you feel as scared as I do? I am afraid that I will not get back to where I was before getting sick. I am not too keen on spending the next few days (few weeks?) in bed.

    Are there ways to prepare for this ? Mentally and physically? Are there things I can do now to avoid a major crash?

    Is it normal to be afraid? Each time, it scares the s*** out of me. I know what to expect and I don't want it to happen.
  2. Nielk

    Nielk

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    I'm so sorry Boule de feu about your relapse. Your symptoms sound pretty intense. I think that for all of us it is really impossible to totally avoid relapsing when we overdue it. The confusing part (for me) is always being able to judge in advance what is too much especially since this illness seems to be cyclical. I don't know how three years ago, I was able (with difficulty) help plan and attend my daughter's wedding. Today, if I have the children over for a meal, I have to stay in bed for a few days to recover. Could it be that you are coming down with some kind of infection or inflammation? From what I know, the only think to do is complete rest and to stay hydrated.
    I hope you come out of it quickly.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A bad crash is not inevitable. When I have overdone, staying absolutely flat on my back for a day or two, drinking a lot (at least a liter a day) of an electrolyte drink like Pedialite (most of the drinks are not strong enough), and if there is any way you can get about 2 liters of a saline drip (gravity, body temperature), things like this can prevent it.

    Best wishes, don't be scared, there are hopeful treatments coming.

    Sushi
    ahimsa and ixchelkali like this.
  4. SOC

    SOC Moderator and Senior Member

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    I'm sorry to hear this Boule! It's an awful feeling.

    I don't have any suggestions for you except acceptance. I've found that fighting the relapse and agonizing over what I can't do just makes the relapse seem worse. I accept that the relapse is coming and go straight to bed and stay there. If I resist temptation to overdo (ie get out of bed for anything except the bathroom), I get over the relapse sooner. For me it's a trade-off -- stay bedbound for a period of time or function badly and stay in the relapse for 2 or 3 times as long. It sucks. I hate it. I have to make myself stay in bed as long as I should. But for me that's the way it is.

    Several years ago my daughter could pull out of a relapse much more quickly by taking the Pall Protocol supplements. But that was when she was functioning mostly normally except during relapses. Once she was continuously ill, it didn't work.

    Basic stuff that probably goes without saying -- I'm particularly conscientious about taking my supplements and staying hydrated.

    I hope someone comes up with something that will help you!
    Best wishes,
    SOC
  5. Boule de feu

    Boule de feu Senior Member

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    Thank you for this, Nielk. It seems that the inflammation gets worse when i'm exhausted or if I don't pay attention to what I eat. The whole time they were here, I was able to show a good face. I'm surprised it did not show how bad I was feeling.
  6. Boule de feu

    Boule de feu Senior Member

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    Good idea. I will ask my husband to get some for me. I wonder if it will help with the inflammation, too.
  7. Boule de feu

    Boule de feu Senior Member

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    I don't think I will have a choice since changing position (lying down or getting up) gives me some pretty nasty vertigo and makes the nausea worse. I will stay in bed. I agree that acceptance is the way to go. Looking forward and knowing that it will stop, eventually.
  8. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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  9. ixchelkali

    ixchelkali Senior Member

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    I'm really mostly seconding what's already been said: aggresive rest therapy, lots of fluids with electrolytes. I would also suggest sauerkraut juice for the canker sores. Get fresh sauerkraut (the kind in bags in the deli case, not canned) and squeeze out the juice; swish a couple of tablespoonsful around your mouth where the cankers are and then swallow it. Do it 4 or 5 times a day. It will usually clear up cankers in 2 or 3 days. I'd also suggest some probiotics to help get the good gut flora back on top; like yogurt, if you can handle dairy.

    But most of all, rest, rest, and nothing but rest for a few days. Be gentle with yourself.
  10. Ocean

    Ocean Senior Member

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    Yes I've had this experience too, including the worry about a bad crash. A few times now I have been pleasantly surprised when after a week or few weeks of resting I found that I did not end up with the type of crashes I've had before that last months and leave me at a lower level of functioning than I was pre-crash. I hope that will be true for you too that while you may crash, you will recover to where you were pre-crash in not too long. My best tip to avoid getting worse, laying down with eyes shut in the dark for as many days as you need and once you feel better doing that for even a few days longer. And ease very slowly back into activity, err on the side of caution. Rest, no activity, no stress, take nice deep breaths, do relaxing visualizations as you try to drift off to sleep.
  11. taniaaust1

    taniaaust1 Senior Member

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    I thought everyones replies to you were good. I do the same as everyone else said they do when I feel a crash coming on.. aggressive rest therapy (ART) and will stay in bed for days or whatever until the big crash risk has passed.

    yes.. and I can stop it happening if Im able to then do enough aggressive bed rest to ward it off, if Ive gained awareness of what is going on quick enough and acted on that.

    yes I get very scared.

    I was once bedridden for 9mths and hence fear that again.. not able to handle sound, talking, light etc again and stuck in a room in bed for a very long time. I actually fear death as I believe I will die if I get that bad again as I dont have another to nowdays care for me like my children did before. Been there once.. NEVER want to be there again. Its worst then death.

    As very annoying as it is.. a few days or even 2 weeks in bed doing aggressive bed rest is nothing compared to a big crash.

    To mentally deal with the situation (when I have to do aggressive bed rest) I tell myself that Im having a holiday and try to get in that frame of mind. eg "lucky me.. I are going to have a holiday" "Im allowed to lay here all day and do nothing" "Im allowed to sleep in and enjoy". (I know this sounds stupid but it does help me mentally if I can get in that frame of mine rather then get annoyed over having to force myself to stay in bed)

    I try to make the aggressive bed resting as fun as possible too eg get someone to pick up your favourite DVDS from your library so you can watch them if you are up to it..or other things which you can do in bed when up to it. Maybe someone can pick you up your favourite dried fruits or whatever you like to eat.. and have them by your bed.

    The more you dread the whole situation.. the worst it is. Trick yourself into thinking you like the situation instead of hate it. Dont allow the thoughts of all you'd rather be doing take over.
  12. Boule de feu

    Boule de feu Senior Member

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    Oh. Boy. I thought yesterday was bad... :-(
    This morning, I could not get up. My head was so heavy. Could not even lift an arm. I will stay in bed.
    My head is still spinning. Thank you for the tip. I will try it. I'm afraid I can't tolerate dairy, it increases my IBS and makes my throat hurt more.
  13. Calathea

    Calathea Darkness therapy

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    I agree with aggressive rest, electrolytes, watching silly TV, and not beating yourself up about it. It may be a good idea to stock up on healthy ready meals or similar, if cooking will be an issue. Something I find useful is to wrap myself in my electric heated throw as soon as I realise that I'm flagging. It seems to revive me relatively well. This is a soft fluffy throw, rather than an underblanket.

    The Weleda Medicinal Gargle works beautifully for canker sores for me. I'm not sure it's available in Canada, in which case look up the active ingredients and see if you can find something similar. I wouldn't worry about any of the homoeopathic ingredients, they won't be making any difference, I think the main things are the herbal extracts of myrrh and krameria.

    And try not to let the situation recur! I used to let guests wipe me out as well. It's not a good idea. Sometimes people will try to guilt trip us into running circles around them as hosts.
  14. Boule de feu

    Boule de feu Senior Member

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    Thank you! Thank you! Thank you!
    It makes me feel better.
    LUV.
  15. Boule de feu

    Boule de feu Senior Member

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    So I guess computers are a no-no, too? LOL
    I will shut the blinds and not move a finger for a while. It may do the trick!
    Thank you everyone for your wonderful suggestions. I did not think I would get so many answers in such a short time.
  16. Boule de feu

    Boule de feu Senior Member

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    Thank you for being so open about this. You had it rough, too. :(

    The first two years, I was bedridden too. I could not tolerate the light at all, so I made myself a little bed on the basement floor in front of the TV. I was not able to watch a lot of TV either. No contact with the outside world. This is when I developed severe MCS and fibromyalgia. I did not know how much longer it would last, so I never worried about it. I thought it would eventually pass. I was too sick to even realize what was going on. It took a year before I got a diagnosis. It's only then that I realized that I was in for a pretty rough ride.

    The longest relapse I had after that was 10 weeks. It was not as bad but it was no fun either. This is when I got scared it would last another 2 years. But it didn't! :thumbsup:

    I try to build up my acceptance level on that fact : I know it won't last.
    I like your idea of treating it as if it were a holiday. I worked hard, so i'm aloud to rest now.;)

    My last relapse was right after the Christmas holidays. It only lasted 10 days.

    In French, we have a saying: A scalded cat fears cold water.
    I guess this is what is happening to me. I'm afraid of what might be because I KNOW what could be. Do I make sense?
  17. Boule de feu

    Boule de feu Senior Member

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    I wish I could use an electric blanket since i'm always freaking cold - it would feel so wonderful! - but the heat makes the inflammation worse. I can't take hot baths, either.

    We have a product here in Canada for canker sores. It's called Amosan. It does work well.

    I don't think I will be eating much today. I'm afraid I won't be able to make it to the kitchen. I'll make sure I drink a lot, though.

    The last time we had visitors here, it was 3 years ago. I thought it would never happen again, but I could not resist this time around. I missed my friend a lot, and she is very old. It might be her last visit. I'm happy we did it.

    Tania made me think: How can we be so sick and not die?
  18. Calathea

    Calathea Darkness therapy

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    The eating thing sounds like something to address. Can you get snacks which you can keep by the bed? Bland, salty, whatever works for you. I have small packets of granola, fruit/nut bars, and low-fat crisps, for instance.

    This can also be a good time to place an order for online delivery from a supermarket, if you have access to this.

    Do you have any support at home? How are you managing for personal care? Baby wipes can be useful if you're not managing to wash as often as you'd like.
  19. Boule de feu

    Boule de feu Senior Member

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    I was pretty disorganized today, but yes I will keep something to eat by my bed. I love salty crackers. It helps for the nausea.

    I have a lot of support here (when they are here after work/school). Today, I was not able to shower or to look after that since I slept a lot. There is a seat in the shower, so I can relax and let the water run. It does not require a lot of effort from my part.

    Keep posting guys, it helps a lot ! :)
  20. ixchelkali

    ixchelkali Senior Member

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    About the fear. That's something that kind of lurks around all the time, knowing that it can get worse, wondering how I'd cope if it did. But I try not to get caught up in it. When it comes up, I just sort of acknowlege it, like "Oh, there's that fear again. Hello, fear, are you back? Anything new?" So I'm not shoving it away or stuffing it, I just don't get excited about it, either. Ho hum, that old fear.

    If the fear tries to take hold, I just tell myself that either I'll get worse or I won't. I'm going to do all I can to prevent getting worse (rest! and taking care of myself) and worrying isn't going to help. In fact, fear just adds stress which is counter-productive. Pushing fear away doesn't work very well, either. So I start with some deep breathing and try to just release it.

    If that doesn't work, I bargain: "Okay, fear, you've got 10 minutes to tell me every awful thing that could happen, then I'm moving on to something else." If the fear is really stubborn, I do a kind of combo; I just dive right into the fear and wallow, while simultaneously doing worst-case-scenario planning. Somehow, having a plan, any plan, makes me feel better. Sometimes when I wallow in fear, the scenarios become so absurd that I start laughing at myself. Or sometimes it just gets boring (pretty quickly, in fact); then I'm done with it. Until next time.

    I suspose that sounds kind of crazy. But the big thing is, don't be afraid of the fear, because then it can spiral out of control. And that's not what you need to be doing, you need to be resting and getting better.

    You WILL feel better. You've been through this before. It just can be so bloody slow to happen. I hope that this isn't one of the times you have to crawl back, inch by inch. I hope this is one of those times when a few days of solid rest takes care of it, and you're back where you were. In the meantime, try to turn your thoughts to those things that give you warm fuzzies. I don't know if it helps, but at least the time will pass more pleasantly.
    ahimsa likes this.

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