9:31 a.m.
Dear Friends:
A person who I have been communicating with suggested I forward my
reply to her to others in the support network. As all people are
treated confidentially, I will not name the individual but I thought
I would do what she suggests and pass on my response to her, in the
hope it will help someone going through something similar.
Lydia
Lydia E. Neilson, M.S.M., Founder
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667 Fax (613) 829-8518
E-mail: ag922(a)ncf.ca
Web: http://www.mefmaction.net
Dear Friend:
First of all, I want you to understand that your reaction to exercise
is normal for people who have ME/CFS. Until you are in the recovery
mode, exercising will set you back. Even in recovery mode, you must
be very careful. If you want to do any kind of exercise, keep it to
careful stretches so that your body stays limber and just do plain
walking. If it means only walking in your house, then do just
that. I am sending you what happens to people who have ME/CFS and
they exercise before they are ready to do so:
RESPONSE TO EXERCISE
Healthy People:
A sense of wellbeing
It invigorates them and acts as an anti-depressant effect
Resting heart rate is normal
Heart rate is at maximum workload and elevated
They get a maximum oxygen uptake and elevated
Age-predicted target heart rate can be achieved
Heart functioning is increased
Cerebral blood flow increased
Cerebral oxygen increased
Body temperature increased
Respiration increased
Cognitive processing is normal or more alert
Recovery period is short
Oxygen delivery to the muscles is increased
Gait kinematics is normal
ME/CFS People
Feeling of malaise, fatigue and worsening of symptoms
Resting heart rate is elevated
Reduced heart rate
Oxygen uptake approximately half of sedentary controls
Age-predicted target heart rate cannot be achieved
Heart functioning is sub-optimal level
Cerebral blood flow is decreased
Cerebral oxygen is decreased
Body temperature is decreased
Respiration, breathing ire=regularies occur i.e. shortness of breath
and irregular breathing
Cognitive processing is impaired
Recovery period at least 24 hours but can last days or even weeks
Oxygen delivery to the heart is impaired
Gait abnormalities
I hope that helps you to realize that what is happening to you is for
a reason and why you feel worse after exercise.
Your mom's reaction to your illness is lack of understanding what a
chronic illness is. She is not any different from most people who
have not been exposed to chronic illness before. It is hard to
believe how anyone can be ill for so long without getting better. I
doubt very much that at one time you would think your illness could
go on for so long.
When an illness is considered chronic, it means that it goes on for a
long time and can wax and wane. Some days are better than
others. That is with all chronic illness and ME/CFS is no
exception. You have to get over the fact that you must have done
something wrong because you are not doing the right things and if you
did you would be better by now. To get better you need treatment
that is geared towards the illness. In our case, the treatment
treats some of the symptoms. The only part you can influence is the
stress and pace as much as you can. It is important that you do not
go to the point of exhaustion and always stop much before you get
there. That accomplishes two things. One, if you stop before you
reach the breaking point, you make the decision to stop instead of
the illness stopping you. In addition, your recovery rate is better
if you rest before you exhaust yourself.
How other people react to your illness is something you cannot
control, just like you can't control what people think of you. You
may have changed because of illness as to what you can do but you are
not the illness and are still you. You need not be ashamed because
others feel you have been ill long enough and it is time to shape
up. It is hard for anyone to believe that in this day and age there
is not something that a doctor can give you that will make you
recover. We think that once we are diagnosed, everything will be
fine and it is just a matter of time before we are as good as
new. That is not reality.
From this day forward, hold your head up high and be yourself. Stop
indirectly apologizing that you are not the way people think you
should be. You are equal to everyone else and those who do not treat
you with respect and caring, and make you feel bad about yourself,
keep your distance form them. Go on with your life as best you can
and know that the National ME/FM Action Network will keep working for you.
Lydia E. Neilson, M.S.M., Founder
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667 Fax (613) 829-8518
E-mail: ag922(a)ncf.ca
Web: http://www.mefmaction.net