Les personnes qui me connaissent savent que bien avant l'arrivée de l'EM dans ma vie, j'étais une femme dynamique, enjouée et verbo moteur.
Mis à part le fait d'être verbo-moteur, j'avais déjà senti dans mon corps comme une sorte d'élan ou de "boost" donnant l'impression d'être branchée sur un méga courant électrique.
Je dis souvent à mon entourage que je me sens parfois comme un pylône électrique!
Dans les situations plaisantes ou non, le corps vit un certain niveau de stress qui diffère d'une personne à l'autre: il semble que ces montées seraient attribuables à l'adrénaline.
Il y a de cela quelques jours, j'ai découvert un article qui s'adresse aux médecins traitant les personnes affectées par l'EM, et qui composent avec des montées d'adrénaline. Cet article traite sur la façon d'aider et de soutenir les PAEM à gérer ces montées, explore les signes et comportements, ainsi que les conséquences sur le plan émotionnel, physique etc., et quoi faire dans ces situations.
Ce que je lis fait vraiment sens: en situation de stress (réel ou perçu), mon corps est sous le coup de l'adrénaline, et dans cet état, je donne l'impression d'être en pleine forme, d'avoir une énergie du tonnerre alors qu'il n'en est rien. C'est trompeur, nul doute....Je me suis reconnue à plusieurs endroits dans ce texte, livré ici en intégralité dans sa version originale anglaise.
Ce qui me rappelle ma dernière visite médicale avec le rhumatologue. Souvent nerveuse lors de ces rencontres, ne voulant rien oublier car je ne le vois qu'aux 6 mois. Je me suis assise puis j'ai commencé à débiter je ne sais plus trop quoi, liste en main, blablabla.....:O
Je me voyais faire: blablabla.....Je parle beaucoup, et fort, comme si j'ai un temps limite pour TOUT dire. Le médecin me regarde calmement, stylo en main, posant une question de temps à autre. Je n'aime pas être dans cet état "électrique", car on dirait que je conduis trop vite sur une autoroute! C'est plus fort que moi, je parle, parle, parle et mon coeur bat comme un fou. Après, je tremble de partout, je suis faible comme si je venais de faire un marathon.
En lisant cet article, je me suis reconnue à plusieurs endroit: je me dis qu'il en sera probablement de même pour vous. Remarquez que dans ces cas où l'adrénaline est élevée, les PAEM ont l'air "bien", en pleine possession de leur moyen, articulés, présents, etc. C'est une apparence, en fait. Mais elle peut nous jouer de sacré tour physiquement, mais aussi pour ceux qui ne comprennent rien du tout à l'EM: peuvent croire qu'on est soudainement "guéri" ou en voie de l'être?
Car oui, il y a un "mais", et entre autre, des conséquences physiologiques et émotives qu'il serait préférable de comprendre afin de mieux gérer ces situations.
Pour ceux qui ne peuvent lire l'anglais, je vous invite à utiliser l'application de traduction du blogue situé juste à droite, car vous aurez accès à la langue de votre choix.
Est-ce que vous vous retrouvez dans cet article?
N'hésitez pas à m'en faire part., si vous le voulez bien.
Bonne lecture,
Mwasi Kitoko
*********************************************************************
Copyright © Jodi Bassett November 2010. Updated March
2012. www.hfme.org
M.E. patients have strict limits on how active they can be. If
these limits are breached, symptoms worsen immediately and there is also a
further deterioration 24 - 48 hours later, as well as the very real potential
for repeated or severe overexertion to prevent significant recovery, cause
disease progression or even death.
It is very important that M.E. patients stay within their limits.
Unfortunately, M.E. patients may find staying within these limits all of the
time very difficult for a number of reasons.
This paper explains how carers, doctors, and also friends, family
members and partners of M.E. patients, can help patients to avoid overexertion
and so have their best possible long-term health outcome. It also describes the
characteristics and signs of adrenaline surges and relapses in M.E. for the
benefit of these individuals, as well as for newly ill M.E. patients
themselves.
What is an adrenaline surge and how does this affect M.E. patients?
People
with M.E. can sometimes operate significantly above their actual illness level
for certain periods of time thanks to surges of adrenaline - albeit at the cost
of severe and prolonged worsening of the illness afterward.
Adrenaline
is often referred to as the 'fight or flight' hormone as it kicks into action
in situations of potential danger. However, adrenaline also kicks in when the
body is in physiological difficulty, which is very often what is happening to
severe M.E. sufferers. Adrenaline surges make the heart pump faster and raise
the blood pressure, forcing blood around the body with greater force to supply
the muscles with more oxygen, so that they can make a greater effort. Surges of
adrenaline increase the metabolism. They also relax and dilate the airways so
that more oxygen than usual can be taken in. Adrenaline surges can also
decrease the amount of pain felt. As a result of all of these factors,
adrenaline surges - while they last - have the ability to increase physical
speed, strength and other physical abilities.
Unfortunately, when these bursts of
adrenaline wear off - as they must - people with M.E. are left far more ill as
a result for many days, weeks, months or even years of overexertion. People
with M.E. are harmed by adrenaline surges, both by the physiological stress to
the body of the changes caused by adrenaline, and by the extra activity which
adrenaline enables, which may be far beyond the body's normal limits so that
such activity causes damage. For every short term 'gain' there is a far greater
loss overall.
Surges of adrenaline can last hours, days, weeks or even months at
a time. These adrenaline surges are a bit like credit cards. They allow
patients to do things that they could never otherwise do, or 'afford.' But the
interest rate is extortionate, sky high, a killer. As Clytie, a very ill M.E.
patient, explains:
I try to xplain this one in terms of money
ok, you could buy a ferrari, coulnd't you?
no, i don't have the money
oh, but you could borrow lots of money, sell your house, talke up dealing
drugs, gamble, and in the end you'd have your ferrari
<blank look>
maybe for a day or so, before the l,oan sharks shoot your kneecaps off, and the
gangs blackmail you, and you have to find a way to rerpay all that money...
could take you a lifetime
<rather frightened look>
yeah. you get the point
The
degree of physical incapacity varies greatly, but is directly related to the
length of time the patient persists in physical effort after its onset; put in
another way, those patients who are given a period of enforced rest from
the onset have the best prognosis. Since the limitations which the
disease imposes vary considerably from case to case, the responsibility for
determining these rests upon the patient. Once these are ascertained the
patient is advised to fashion a pattern of living that comes well within them.
Why do M.E. patients sometimes overexert themselves, considering
the severe consequences?
There are many reasons why this occurs, including the following:
- Once a patient gets going, stopping can be very difficult.
This is due to neurological problems with stopping and starting new tasks
easily, and also because once an adrenaline surge has occurred, it takes a
long time to wear off.
- When a patient has become very ill from overexertion or is in
the middle of an adrenaline surge, judgement can be affected, and the
patient may be lost in the moment and not realize how important it is for
them to stop what they are doing as soon as possible.
- Resting after a relapse is often very difficult for the M.E.
patient emotionally. It can be very difficult to lie in a dark quiet room
in extreme pain and worse, with no distraction from it. It can be tempting
to keep the adrenaline surge going in a small way, to put off the crash.
(A bit like drinking more alcohol the day after a night of heavy drinking
to delay the inevitable horrible hangover.)
- Many patients with M.E. have been treated appallingly in the
earlier stages of their illness. Medical abuse is very common. Patients
have often been told or forced to keep pushing through their limits and
that this is what they must do if they ever want to recover. This ignorant
advice has forced many patients to develop a very high tolerance for pain
and discomfort - and this can be a real obstacle when it comes to training
oneself to rest appropriately when experiencing minor symptoms. Patients
have often become very used to paying a high price afterwards for every
little bit of fun they have or every task they do, and have had to accept
this as a way of life for so long that change can be difficult.
- Many patients, along with much of the general population,
have a very strong work ethic and at times find not pushing themselves to
do things very difficult. M.E. patients need a level of discipline at
least as high as the average Olympic athlete to control and restrict all
their activities so completely for years.
- M.E. is an acute onset disease which means that patients go
from healthy to very disabled from one day to the next. Being so disabled
so suddenly is shocking and takes a long time to get used to. Particularly
in the early years of M.E., patients often feel the need to constantly push
at the boundaries to work out where their limits are. This is also often
tied to denial of the realities of the disease, and a desire to keep
ignoring physical limits in the madly optimistic hope that this will make
them go away as quickly as they came.
Other reasons include:
- Due to the brutal
severity of M.E., some M.E. patients must overexert just to live or to
have a little bit of basic human contact.
- Many M.E. patients overexert themselves as they have no other
choice, unfortunately, and do not have the appropriate financial or
practical support they need due to the political situation facing M.E.
patients. Patients with M.E. are also often forced to overexert themselves
in order to get the welfare payments they are entitled to (and need to
have to survive) and to try and get some basic medical care.
- Many M.E. patients are told that 'everyone recovers, it is
just a matter of when, and at most you will be well in 5 years' by
ignorant doctors, websites and patients that do not understand the massive
difference between the neurological disease M.E. and mere post viral
fatigue syndromes. Thus they have no idea that there is a big long-term
cost with every short-term relapse, and by the time they do get this
information it is often far too late and they have become severely
affected and greatly harmed their chances of future recovery.
- Many M.E. patients are told that they are not ill, and that
they cannot do things simply because they believe they can't. This
incredibly abusive brainwashing can lead many patients to again and again
- Try and push past their limits in a brave but misguided
effort to 'mind over matter' the disease. Unfortunately, many patients
have so much faith and trust in their doctors that they ignore what they
know to be true about their own bodies and their disease for many months
or even years, often ending up severely affected and very disabled.
What signs may indicate a relapse or an adrenaline surge?
Signs that a M.E. patient is overexerting and/or running on
adrenaline may include the following:
- Very fast and continuous talking is a sure sign of an
adrenaline burst. Speech may also become very loud as the patient becomes
unable to modulate their volume level. This may also be accompanied by
fast and jittery movements. Speech may make evident feelings of euphoria,
over-excitability or wild optimism and will often be less well-considered
than normal. The patient may also sit up or stand for longer than usual
(without realising they are doing so) or get fired up to undertake tasks that
they would usually be too ill to do. (Big cleaning or organisational tasks
for example.)
- After or during an adrenaline surge, sleeping and resting is
very difficult as the patient feels 'wired' and very
"unfatigued". Sleep onset may be delayed for many hours, perhaps
leaving the patient unable to sleep until mid-morning or unable to sleep
that night at all. The patient may also only be able to sleep for one or
two hours at a time, awaken for a few minutes many times during the night,
and/or may experience very light sleep where the slightest noise wakes
them up.
- Particularly in the first few years of the disease, patients
may sleep, or be unconscious, for much longer than usual after
overexertion, perhaps 12 - 16 hours or more. In very severe cases, the patient
may be unable to maintain consciousness for more than a few hours a day.
- When suffering a severe neurological episode M.E. patients
may be mistaken for being drunk or high on drugs. They may slur their
words, talk very fast and ramble, seem euphoric and have very poor
balance.
- A lack of facial
expression and 'slack' facial muscles and/or extreme facial pallor.
- A burning sensation in
the eyes and/or an inability to tolerate visual stimulus and to keep the
eyes open.
- Excessive water
drinking (to try to boost blood volume).
- Excessive hunger and a desire for sugar- or carbohydrate
-rich foods. Even after eating, the patient may still feel as if they have
very low blood sugar and may need to eat far more often than usual.
- Sweating or shortness
of breath after minor exertion.
- Visible shaking of the
arms or legs or twitching facial muscles.
- Paralysis and weakness
in the muscles or an inability to move, speak or understand speech.
- Sudden loss of ability
to walk.
- Very sore throat
and/or painful and tender glands in the neck (and possibly other flu-like
symptoms).
- Very distinctly pink,
purple or blue feet or legs, with white blotches, after standing or
sitting for too long.
- Patients may complain of a severe headache or feeling of pain
or pressure at the base of the skull. This may also be accompanied by pain
behind one or both eyes or ears, or blackouts.
- Sudden onset ringing
in the ears or loss of hearing.
- During and after overexertion, a patient's pulse will very
often become much faster (150 bpm or more), their blood pressure will
become lower and their temperature may rise and they may feel very hot (or
alternating very hot and very cold). Pulse and/or temperature measurements
may be useful in determining when a patient is overexerting. As blood pressure
readings tend to only be severely abnormal when the patient is standing or
sitting upright - which in itself causes relapse - this test will often be
counter-productive and inappropriate.
Other
things to be aware of:
- Sometimes when the patient is running on adrenaline, it is
very obvious that this is what is happening. The patient is able to do
more than usual but feels very unwell and wired; a bit like they haven't
slept in days but have had a LOT of coffee. At other times, particularly
where the adrenaline surge is long-lasting, the adrenaline effects can be
more subtle and can easily be mistaken for genuine wellbeing for a period
of time.
When a patient declares that they are improving
and suddenly able to do tasks again which they have not been able to do for
many months or years - and this occurs right after a very big task has been
completed such as a house move or a very taxing trip to the doctor, it is
almost certainly an adrenaline surge and not a real improvement. The big task
was well beyond their limits and so the body has releases a surge of adrenaline
just to cope. Unfortunately, this type of lower-level but prolonged adrenaline
surge will often be less easily recognized for what it is by the patient,
especially where there are problems with memory and placing events which
occurred weeks ago in the appropriate timescale. (Events which occurred more
than a few days ago may be forgotten, or seem to have occurred much longer ago
than they actually did.)
This type
of adrenaline surge can sometimes fool even the most experienced M.E. patients.
Having hope of improvement replaced with the realities of a severe relapse can
be very disheartening, to say the least.
- When a patient regularly
pays a big price for doing small tasks but then suddenly pays only a small
price for a big task, suspect an adrenaline surge. There is just no such thing
as a free lunch with M.E., unfortunately. (No expected relapse indicates use of
the 'credit card' or that the patient's body is 'writing cheques it can't
cash!')
- Often a
considerable rest period is needed before and after a task, which may be hours,
days, weeks or months long. For example, someone may need 2 weeks rest before
an outing, for example, and may then spend 3 weeks extremely ill afterwards
recovering from it. The need for a long rest period before a task is a sign
that this task is not within usual limits and will probably require an
adrenaline surge to be completed and so be detrimental to the patient's
long-term health.
Ideally,
a patient will only complete tasks which can be done daily or every second or
third day without causing relapse. The goal is to do only 80% of the activity
that can be done sustainably each day.
- Thanks to adrenaline surges, a patient may spend several
hours one day a week studying or working and then 6 days extremely ill and
disabled, or be able to struggle through study or work part-time and spend the
other half of their week as well as all their weeks off and end of year holiday
time extremely ill and disabled. This type of schedule can only be kept up for
a few years at best, as the patient becomes sicker and sicker and less able to
bounce back from relapses.
- Some patients will manage their limits very carefully but
still exhibit signs that they are running on a low level of adrenaline most or
all of the time. This is likely an indication that more rest is needed and that
more challenging tasks should, if possible, be scaled back or discontinued.
- When the adrenaline surge starts to wane, the patient will often
feel very irritable. Part of this is due to problems with blood sugar and so
eating a substantial meal can help the patient feel better both physically and
emotionally. Cravings for sugar and carbohydrate-rich foods are common at this
time, but a meal containing some protein, fat and some low GI and GL
carbohydrate foods is a better choice. Part of this is also an emotional
response, as coming down form an adrenaline high is very difficult emotionally.
A patient has just had a reminder of how it might be if they were not as ill
and disabled, and also has a significant worsening of their symptoms and
disability level.
The patient may also feel very cold and shaky and even
more sensitive than usual to light and noise as an adrenaline surge starts to
wane.
- When a person with
M.E. starts to rest after an adrenaline surge, it takes a little while for
the adrenaline to wear off. So the patient will start resting and slowly
start to feel more and more unwell. Unfortunately the patient will have to
go through a period of feeling much worse, in order to feel better.
Starting to feel worse shows that the adrenaline is wearing off and that
the patient is resting properly. The period of feeling very ill may last
for hours, days or weeks or longer, depending on how ill the patient is
and how severely they overexerted.
In contrast, when a M.E. patient who has not overexerted rests they will
feel better right away and this improvement may continue to build over
time. Thus feeling much more ill after a period of resting is another sign
that the patient has been running on adrenaline and overexerting.
What can you do to help?
- When you notice fast
talking, and other signs of an adrenaline burst or surge, encourage the
patient to slow down. Perhaps remind them that the sooner they rest, the
better off they will be.
- When a patient is
talking very fast and very loudly, subtle reminders to speak more quietly
may be helpful. (Remember that slow slurred talking may in fact be a very
good sign of health and of living within limits!)
- When you notice a
patient sitting or standing up when they do not need to, or for longer
than they can usually cope with, a reminder to lie down may be helpful as
the patient may not realise that they are standing up for too long.
- When the patient has
completed a big task that was far beyond their limits out of necessity, be
aware from the outset that this will cause a surge of adrenaline to be
released. This surge will affect the patient during the event but probably
also for some days or weeks or months afterwards. The patient may feel
somewhat less ill and be able to do some tasks which they haven't managed
for some time. But tasks done using adrenaline surges come at a very high
cost long-term and so must be strongly discouraged and absolutely never
encouraged.
- Making sure that the patient is aware of this
characteristic of M.E. before a big task is completed and before they
tragically misinterpret these signs of serious overexertion and illness as
a desperately wanted improvement in their condition can only be helpful.
- When a big adrenaline
surge has occurred, the only way to stop it is to make sure that the body
is no longer placed in physiological difficulty. For the severe M.E.
patient, this will mean at least 3 days of complete rest. (The time period
of rest needed will vary with how severe and prolonged the surge is and
how ill the patient is.) Adrenaline will stop being released when the body
is at rest and time has passed allowing the adrenaline in the system to
wear off.
- Severely affected patients will need almost
complete rest constantly, to avoid adrenaline surges and relapses in
symptoms.
- Do not instigate
conversations with a patient when they are trying hard to come down off an
adrenaline surge. You may ruin hours of solid resting by asking a question
that forces the patient's body to have to rely on adrenaline again in
order to reply. If possible, write down any questions you have so that the
patient can answer them in their own time and in the way easiest for them.
When patients are severely affected and can't speak often, you may want to
devise a system whereby they can reply to yes and no questions or
questions with 2 options using hand signals or printed cards.
- If possible, if you
are a carer who visits the patient's home for a few hours a day, make a
set time to talk to the patient so that they do not have to be in 'on' and
ready to talk the whole time you are there. Staying 'on' may require an adrenaline
burst and leave the patient very ill afterwards even of you only spoke to
them very briefly. Having to be 'on' in case of interaction is almost as
taxing as actually talking, for many patients.
- When you speak to a
M.E. patient who is very ill or relapsing, speak slowly, calmly and
somewhat softly. Do not speak loudly or shout. Do not ask stressful or
difficult questions when the patient is at their most ill or if it is not
their 'best' time of day.
- Don't repeat things
unless you are asked or indicated to do so. M.E. patients often have a
significant time delay in understanding spoken words, and they may rely on
a period of silence after each statement in order to understand what you
have said.
For more information on how to appropriately treat M.E. patients
and help them to avoid relapse please see the following two essential papers: Hospital or carer notes for M.E. and also Why patients with severe M.E. are housebound and bedbound.
How should you use this information?
This paper largely focuses on patients who are at the severe end
of the moderate continuum to severely affected patients who are almost entirely
bedbound. It will have to be adjusted somewhat for patients who are more
moderately affected, or extremely severely affected.
How much assistance and guidance you give a M.E. patient to help
them minimise relapses depends on several factors. These include how close you
are to the patient, how receptive they are to input from you, how ill the
patient is and how well they are managing their symptoms and relapses
themselves.
M.E. patients understand their own limits very, very well almost
all of the time. All they may need from you is the occasional verbal reminder
to lie down or to rest. Perhaps in most cases, just the fact that you have a desire
to help and have read this paper and that you both have a solid understanding
of the challenges they face and the nature of M.E. relapses will be enough.
Knowledge is power.
Conclusion
It may seem obvious that M.E. patients would always do what is
best for their long-term outcome, but this is not always the case. M.E. is a
very difficult disease to manage. M.E. patients are very often sick to death of
all the resting, carefulness and explaining required of them and so anything
that you can do to help is very welcome.
