Saturday 29 August 2015

REST AND RELAPSES

Bonjour,

I'm sorry that I haven't been around so much but I've been in a relapse. 
In fact many of my friends seem to be in the same place at the moment. 
I wonder what's going on? 

I had been doing so well but maybe I just pushed myself a bit too far. 

So what is a relapse in M.E. ? 

A relapse is more serious and long term than post-exertional malaise which is an essential feature of M.E. 

Postexertional neuroimmune exhaustion (PENE) is compulsory as a criteria for Myalgic Encephalomyelitis (M.E.) in the latest International Consensus Criteria 

For me a relapse is a deterioration in my level of health that lasts more than a few days. So far this has lasted four weeks!


But what causes a relapse? 


A relapse can be caused by 
  • overactivity
  • poor sleep
  • a secondary illness
  • stress
  • stressful relationships
  • special events
  • sensory overload
Of course the next question for me and anyone else in a relapse is how can we recover from a relapse? 


`Recovery from ME depends, as we shall see, upon a very delicate balance between infection and immunity, so it is as well to be informed of other factors which maybe detrimental to progress including:any upset to the immune system(commonly immunisations and immuno-suppressive drugs such as steroids)hormonal disturbance (such as puberty, pregnancy, childbirth,contraceptive and other hormone therapy unless strictly monitored)exposure to toxic chemicals and drugs (including those in recreational use such as alcohol and tobacco)Other deleterious factors to be avoided if possible, comprise surgical injuries (especially to the head and neck), malnutrition and sudden climatic change.We do not know why relapses can be cyclical (at weekly, monthly or longer intervals) despite the patients’ best efforts to avoid all the above.` 

How can we manage a relapse? 


REST is very important and that's total rest. 

Rest
Rest
Rest
And hope to get better
That`s my advice to you
You know it makes sense as
It`s the best thing to do

Rest
Rest
Rest
And hope to feel better
I know it`s hard to do
But it`s the only thing
That will benefit you

Rest
Rest
Rest
Listen to what I say
Your body needs to heal
And have a proper rest
As exhausted you feel 

Rest
Rest
Rest
Let your mind become still
Repose your tired brain
Clear away all your thoughts
As they are only a drain

Rest
Rest
Rest
Stop! It's now time to rest
This is the remedy
When you are in relapse
Towards recovery!
  

Of course that means different things to different people depending on the level illness and the severity of the relapse. 

So I have been doing a lot of resting and very slowly making a way to a recovery. But it's hard and so easy to overdo things again. 

Alongside lots of rest the other strategy is to adopt good pacing 

Hopefully I'll learn something from this latest relapse! 

Do you have any other tips advice on how to deal with a relapse? 

Would love to hear from you. 

A bientot 
Love from the French Femme
xxx


P.S Don't cats just know how to rest and relax!! 


6 comments:

  1. No doubt you will have looked at the free library articles on pacing at CFIDSSELFhelp.org

    Did you know there is a new edition of Bruce Campbell's book: "Managing Chronic Fatigue Syndrome and Fibromyalgia: Feel Better, Take Charge, Regain Hope".

    This is the first update since the 2010 edition and adds almost 1/3 more material including a greatly expanded section on pacing.

    The book is available now in their store at the introductory price of $16.95 through September 12th, after which it will be $18.95. (http://www.cfidsselfhelp.org/store)

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    Replies
    1. Thank you Suella. Yes I have seen all the free library articles on pacing but will now look up the book.

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  2. here are two of my poems from my Pamphlet 'Stopping the Clocks'; about post exertion malaise and relapse.

    1) It’s OK; as long as I don’t move - M.E. Stage #2

    I get no healthy body-after-exercise painful glow
    Just moving even, can bring pain and confusion.
    It’s no man-flu, honest, it’s M.E.
    It’s real, only not a flu infection.
    The symptoms, like glaciers, grind relentlessly on.
    And leaves me waking most mornings with a hangover defect,
    Not from booze, drugs or a good night out,
    But from my own health, cheating on me;
    Two timed and screwed over,
    Gone off and left me with my entire life emptied,
    Leaving me to live on with only the clunk of crushed beer cans underfoot
    To remember the party.

    With a body of complaints to keep me company,
    Trying not to grieve for a lifestyle that will never return,
    A memory that says ‘it didn't used to be like this’.
    I look like you, or you, look like myself in the mirror
    But am cursed with the whispered silent spell of post activity malaise.
    It’s OK, I will feel fine, I will get better
    Just as long as I don’t move!

    It’s not a battle I can win but a war,
    A long campaign, and gut deep determination
    And please don’t tell me to get myself together, to push and drive.
    I cannot stand toe to toe with this illness and win
    No ‘Rumble in the Jungle’ between even the weakest heavy-weights.
    It’s no heroic struggle to walk on false legs
    No walk to the North Pole with a royal sponsor
    Get this out of your minds.

    In so many of your eyes it is a false illness, perhaps a deception,
    A scrounger on the prowl.
    I see it; you not comprehending,
    You the caring but sanctimoniously healthy, the sceptical,
    Telling me it’s all in the mind,
    That you get tired too, not understanding,
    Not listening to the simple statement I state again and again,

    It’s OK, I will feel fine, I will get better;
    Just as long as I don’t move!


    2) Today

    Today
    my feet fail to touch bottom,
    drifted beyond the point of safety
    no point of purchase
    to keep my head above water.
    Not drowning

    I float down on a whim not cast by me,
    not buoyed by a heart full of love,
    emptied today,
    lost contact.
    Mostly;
    yesterday and the day before,

    even on days when my physical strength has gone,
    even when my mind has stalled,
    normally,
    I find the love of this world
    get direction,
    feel the push of this current.

    But today, my feet flounder
    my body’s weakness
    takes me still breathing, under.
    Now eye’s water
    and I don’t like the taste of this salted self-pity

    need to turn this around.
    If I could I would walk in the country,
    cheer the eyes with views and lengths of sky,
    conjure up positive visions in the mind’s rekindled space,

    eye-bathe in the light of nature and further horizons,
    see this pain in the body as a mere nuisance,
    a trapped fly tapping the glass pane, is all!?
    I will not think of the future,
    I will not think of what is not possible

    but bathe in the water of just being,
    but bathe in the water of just breathing,
    bathe in each second of life and inspiration,
    bathe in the breathing.


    Jonathan Eyre

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  3. Sorry to hear you're relapsing right now, but it seems you have the right attitude to it. The problem I have is I'm finally beginning to come out of a 4-yr relapse but it's hard to tell sometimes if I'm having small relapses or will end up back where I started. I am continuing to rest (mainly I don't have an option), but also need to do a little more than I have been doing as not doing enough can be a problem too - wish the right balance didn't keep moving (actually, if I'm wishing for things, I wish M.E. and chronic illness didn't exist!). Hope you don't relapse for too long x

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    Replies
    1. A four year relapse is a long time. It's hard to know how long a relapse will continue. I know they can last for years. I hope mine is much shorter than that! You are right in that's about getting the right balance. The problem is for me and probably others is that we may make a little progress but then can slip back again. I think everyone with this illness wishes that it didn't exist. I too hope you are coming out of your long relapse xx

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