I've been dealing with constant fatigue and memory loss more so than usual lately. As a result, I have been dealing with a lot of mental issues.... Just thinking about "it". It's difficult dealing with "it", a disease that has no apparent cause and no apparent cure and one in which medications/rest/exercise only work sometimes and when they do, it's not completely. It's an entirely frustrating situation to be in.
The following is an article that I read on the
Men With Fibro website a long time ago. It's copyrighted by Don Fletcher and Fibrohugs and it's a really good article in trying to understand how to deal with Fibromyalgia.
The Mental Aspect of Chronic Illness
by Don Fletcher
Over
the past several days events in my life have brought home to me a truth
that applies equally to both living with a condition like fibromyalgia
and life in general. That truth is that our thoughts have a profound
impact on how we function. In life how we think about ourselves and our
abilities will dictate not only what we do but also how well we are able
to do it. With respect to our health, specifically living with a
chronic condition like fibromyalgia, how we think dictates how well we
are able to cope with the disease as well as how well we are able to
function on a daily basis.
I must confess that I was reluctant to
agree to write these columns. Why? The simple answer is that I have
always been my own worst critic, a typical type A personality. When Ken
first asked me to do this my thoughts immediately went to reasons why I
should not do it. At the top of the list of those reasons was that I
simply did not see what I had to offer, that I was not capable of doing a
good enough job despite the confidence Ken had expressed in my
abilities. And despite all that I have learned over the years and the
things that I have accomplished I still have not learned not to be so
hard on myself. I don’t need to be perfect; I just need to do anything
that I set out to do to the best of my abilities. That is all that
anyone can expect from themselves.
This same lesson also applies
to how we deal with a chronic disease like fibromyalgia. All that we can
expect from ourselves is to do the best that we can to the best of our
abilities. If our bodies are hurting we cannot expect that we will be
able to complete a physical task quickly and without stopping until it
is done. If we are in a fog the same applies to mental tasks, we are
simply not capable of completing those tasks quickly without stopping.
But why then are we so hard on ourselves when we cannot accomplish these
tasks in this fashion? Time and again I see posts where fibromites are
expressing guilt or another negative emotion over the things that they
could not do because their symptoms made it impossible for them to do
those things.
The answer to that question lies in how our
culture looks at health and illness. We expect to be healthy and that
when we get sick that our medicine will be able to completely cure us
and do so quickly. If it is impossible to cure what ails us then we
expect that the disease will either kill us or else leave easily seen
signs of its’ presence on us. We also expect that with all of the
medical technology available to us that we should be able to know what
causes every disease and be able to point to some kind of test that
clearly shows that the doctors know exactly what is wrong with us, even
if they are currently unable to cure it.
That is where the worst
of our mental issues with this disease stem from. We don’t look sick so
how can we be sick? And there isn’t a test that you can point to and say
that the doctors found this and it confirms that I have fibromyalgia.
As a result we have the problem with those doctors who refuse to believe
that the disease actually exists and because of that debate there are
those in the general public who also believe that this is all in our
heads. On top of this all is our expectation that our medicine should be
able to cure us or at the very least take away all of our symptoms and
do it quickly. The lack of a single, totally effective treatment also
contributes to the belief that fibromyalgia must be a mental problem.
And too often we as fibromites buy into this garbage that we don’t get
better because we don’t want to get better.
So we fibromites are
left to deal with the doubts of both those around us and, much worse,
the ones that we have ourselves. This damned disease as I have heard
many here on Fibrohugs call it just does not conform to what we expect a
disease to be. We don’t know what causes it, we don’t know how to cure
it, and the best that we can hope for - to keep the symptoms under
control - is a process of trial and error with no guarantee of success.
So
what are we to do about this situation, how do we get rid of the doubts
and get to a good mental place? Recently I read an article that stated
that when a person is diagnosed with a chronic disease they go through
the same grieving process that one goes through when someone close to
them passes away. Having had the time to think about this I would agree
that the process is very similar but in my opinion there are some
significant differences due to the way that society views the two
situations.
According to the accepted model there are six stages
in the grieving process. Those stages are; shock, denial, anger,
bargaining, depression, and acceptance. We do not go through this
process in a linear fashion, progressing through each of these stages in
order being done with each as we go on to the next. Each person will
experience their grief in a different way, jumping between these stages
and often revisiting some of them over and over again.
I want to be very clear here
each person will grieve in their own way and at their own pace!
There is no right way or wrong way to grieve so when I discuss the
stages of grief as they apply to being diagnosed with a chronic
condition I am taking this from my own experience. If what I say does
not in any way resemble the process that you have gone through or are
currently going through it means nothing more than we are different
people.
With fibromyalgia I believe that there is actually
another phase prior to the shock. Most fibromites that I know have said
that their initial reaction to their diagnosis was one of relief, a
feeling of ‘finally they know what is wrong with me’. The shock comes
when you learn what it means to have this disease.
You have
endured many months or even years of test after test trying to figure
out what is causing you to feel the way that you do. Each time you hope
that this is the one that will tell you what is wrong so that the
doctors can then cure you and make you healthy again. And with each
normal result the depression and despair gets a little worse. You are
tired and in pain and no one can tell you why or, even worse, make it go
away. And then finally a doctor gives you a name for what is wrong with
you and you feel relieved to finally know that your problems have a
name. But the relief is very short lived because you will then be told
that all the doctor can do for you is prescribe medications that may or
may not keep your symptoms under control. That it will be a process of
trial and error because not all people respond the same way to these
medications and it may take some time to find the right medication or,
far more likely, combination of medications that will keep your symptoms
under control.
And at this point and through the time that you
are searching for the right medications to keep your symptoms under
control you will experience the denial, anger, bargaining, and
depression. There are many different thoughts that might come into your
head during this time, some of them might be;
“I can’t have a
disease like this. The doctors must have missed something. If only I can
get them to keep looking they will find out that I have something else,
something that they can cure.”
“Why me? Why did this garbage have to happen to me?”
“Please let this medication be the one! I want my life back so this one has to be the one that will make the symptoms go away.”
“What’s
the use, I try everything that they prescribe and do everything that
they tell me to do and nothing works. This is never going to get
better.”
“Those damned doctors just gave me a name because they were not willing to do anything more for me! They gave up on me.”
“I can’t live like this. I wish that the doctors would either fix me or finish me.”
“I am such a wimp! I should be able to ignore how I am feeling and just do what I need to do.”
I
could try to go on but these are some of the thoughts that I had while
trying to come to grips with being a person who suffers with
fibromyalgia. Again, each person will grieve differently so you may not
have had thoughts like this and if you haven’t I hope that I have not
planted any seeds in your head.
But how then do you get to a
point where you can accept what has happened to you and be all right?
And this is how I define the stage of acceptance; you accept what has
happened to you and are at peace with that mentally. Because when
dealing with a chronic illness there is another possibility, a stage I
call resignation.
What is the difference? Acceptance is a
positive stage, resignation is a negative one. In resignation you don’t
accept what has happened to you, you become resigned to your fate. In
resignation you resign from life because life has screwed you over and
since you cannot live it completely on your own terms you decide that
life isn’t worth living. You allow yourself to become angry and bitter
but worst of all you refuse to do anything to try to make your situation
better because you don’t believe that anything will work. Your attitude
is why bother trying because you know that nothing will work. More to
the point, nothing is going to work the way you want it to, it will not
cure you and give you back the life you had prior to getting sick and
you are not willing to settle for anything less.
The key to
avoiding resignation and getting to acceptance is very simple. Yet as
with anything simple it is also very difficult and not to be sexist, but
it seems to be harder for men than it is for women. There are two parts
to the key. The first is to learn three very simple little words; ‘I
need help’. The second part of the key is to be willing to accept that
help from any source.
Most of us are familiar with the Serenity Prayer, the one that goes
God
grant me the serenity to accept the things I cannot change, the courage
to change the things I cannot accept, and the wisdom to know the
difference. It is a simple prayer but it contains a rather profound
wisdom in it. When dealing with fibromyalgia you need to be able to
accept that which you cannot change, change that which you cannot accept
but you need to have the wisdom to be able to tell the difference
between the two. The problem is where to acquire that wisdom.
From
experience I will tell you that the first thing that you must do is
find a good doctor, one that you trust completely. You must have the
confidence in your doctor that you know that they will be your partner
in treating your fibromyalgia. And I say be your partner because if you
have this disease you are going to be looking for treatment options on
your own. A good doctor will be willing to listen to options that come
from other sources and give you unbiased advice on whether or not such
an option is right for you.
Develop a good relationship with your
pharmacist as well. Keep in mind that medications are your pharmacist’s
entire job while they are only a small part of the doctor’s. From my
own experience it was a pharmacist who suggested Gabapentin for the
overall treatment of the pain and Baclofen for the muscle tension.
When
within your budget try alternative sources of therapy. I see a
chiropractor because my neck and back often become very tight and sore.
He is able to help me with those problems and ease the pain that I have.
If it were within my budget I would also have tried massage as I have
heard many say that it helps them. There have also been other treatments
that I would like to have tried but due to financial constraints was
unable to. But be careful here of any product that makes claims that
seem to be too good to be true. As with any other disease there are
those who prey upon the desperation of sufferers in order to make a
quick dollar.
But this covers mainly the physical part of
fibromyalgia. You must also be willing to ask for and take help from
sources that will help you with the mental aspect of the disease.
Ask
your doctor if there are any pain clinics that operate in your area.
For newly diagnosed patients there are programs that will teach you
skills to help you deal with the physical and mental aspects of your
chronic illness. Health regions in Canada have also begun to offer
classes like this. The one offered in my region is called “Living Well
with Chronic Conditions” and it uses a workbook titled
Living a Healthy Life with Chronic Conditions.
But
these courses offer only the basics of dealing with the mental aspect
of your fibromyalgia. You also need to ask your doctor to find out if
there is a psychiatrist in your area that specializes in the treatment
of patients suffering with chronic pain. I can see that many are shaking
their heads right now thinking, ‘first he tells us that this isn’t all
in our heads but now he says to see a psychiatrist’. I understand that
there is a stigma attached to seeing a mental health professional of any
type and that the reluctance to see one is made much worse by the
quacks who tell us that fibromyalgia exists only in our heads. However,
there are two extremely important reasons to see a psychiatrist who
specializes in treating patients with chronic pain.
The first of
those is that these doctors can teach you methods to ease your pain
through the employment of certain mental exercises. The second and more
important reason is that no one can be in a situation in which they are
almost constantly in pain without having it grind them down mentally. A
psychiatrist or psychologist has the training to help you deal with this
constant mental pressure. They can also help you work through all of
the emotions that accompany a chronic illness, especially the ones where
you use yourself as an emotional punching bag. After all, negative
emotions will also make you feel worse physically as well.
And
during the period of grieving there will, unfortunately, be a lot of
negative emotions. You will face the task of having to adjust to the new
you, the one that has fibromyalgia and accepting that the old you, the
healthy you, is gone. And to pile on the difficulties for you at this
time you will also have to deal with the reactions of those around you
to what has happened to you. Some of those closest to you will be
sources of comfort and support while others will be sources of stress
and anger. And there is no escape from the situation and as all too many
of us know having to deal with all of this change and loss can be
overwhelming.
But just as you need a doctor to help guide you
through the process of getting your physical symptoms under control you
also need a psychiatrist or other mental health professional to help you
deal with the mental aspects of the disease as well. Trying to ignore
them will not work; they will not simply just go away. If you try to do
this those negative emotions will fester just below the surface and the
problems will get worse until it will come out in ways that you never
intended. And while the negative emotions fester they will quite
literally make you sick, or at least sicker than you have to be because
they will be a constant source of stress and anger.
In the end
what it all comes down to is this; in order to feel the best that you
can with this damned disease you have to treat both the physical and
mental aspects of it. And while you can try to do it alone it will be a
shorter and easier journey if you can just say ‘I need help’ and take
that help from every source available to you.
After the CT scan was OK on Monday, I recieved two
prescriptions for my headaches, Maxalt for my migranes and Butalbital for
my tension headaches. They also doubled my dose of Amitriptyline to 100mg, which from what what I've read and have heard from others with fibro, is normal.
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