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!
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?
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!!
No doubt you will have looked at the free library articles on pacing at CFIDSSELFhelp.org
ReplyDeleteDid 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)
Thank you Suella. Yes I have seen all the free library articles on pacing but will now look up the book.
Deletehere are two of my poems from my Pamphlet 'Stopping the Clocks'; about post exertion malaise and relapse.
ReplyDelete1) 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
Thank you for sharing your poems
DeleteSorry 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
ReplyDeleteA 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
Delete