Here's the link to the workbook we've been going through in the past few meetings. I'll also add it to the links on the right side of our page. You can print the workbook from home, just keep in mind that it's 64 pages, so you may want to print it in chapters as you work through the program. I apologize for not updating our blog sooner! Feel free to e-mail or comment with requests or suggestions for more posts on the blog. Now that we're all settled in our new office, I have a feeling I'll have more time to update this blog :-)
Shock, when initially diagnosed because it takes you by surprise and
hearing that there is no known cause and no cure are harsh words to hear. Why
me, why now? What did I do to cause this? You feel stunned, immobilized. Denial
when you continue to think you can fix it by your own drive or resolve to
overcome the disease by efforts to find out the cause, when in reality, you are
really finding your own triggers. Many will blindly follow others in a drive to
find the cause and others will continually make sweeping statements and analyze
things to the point of immobilizing themselves and often others in their quest
to find the cause for themselves.
Emotional Release or Pangs of Grief and Distress
The feeling you get
when you think no one cares and you are alone. Anger that your life is
compromised and you can no longer function the way you once did. You feel
helpless because things are out of your control. This is a time when you are
desperate and seeking help and knowing that you may not find it and the
medications, treatments, surgical procedures are not working in a way that you
expected them to. The major pity parties and maybe even some more denial
(refusal to believe what is going on) fits in this area, certainly frustration
is here too. (Include other emotional issues you have here.) This is often a
time when we rush to do things that are quite drastic even when we have been
told that eventually things fine a spot to level off.
The feeling that you
don’t know what to do next and learning how to cope and manage things that are
overwhelming you and you don’t know which way to turn, what to do next. Doing
the simplest things turn into major frustration and confusion and thinking
rationally becomes impossible. I think this is when we are still grasping at
straws trying to find the “magic” that will make us well or at least control
the monster we are living with. The Meds, the injections, the surgery, and
trying to decide what approach we want to take become a major task.
Which shall I try?
What do I do feeling?
Where do I go for help and understanding?
Why is this working for others and not working for me?
This is a time that
talking to others often leads us down a path of again attempting to find answers
that may now exist. We are vulnerable and easily confused by others who suffer
a similar complaint. We need to face the fact that no two people will respond
exactly the same to medication or treatment and we need to temper and make our
own judgments about what is really helping and what isn’t and work more with
our Dr. while still listening to others in a support group.
Is when you realize
that you cannot do all that you used to do and your life has changed and
especially when having to go on disability. You feel guilt for not pulling your
weight, for placing burdens on others that once you were able to handle. Your
lifestyle is changing and it is out of your control. I speak for myself when I
say: (I lived the guilt stage for at least a year. Guilt when you no longer
able to participate in social things the way you used to, etc. The guilt others
inflict on you (and you allow it) when they tell you that you look fine and
what is your problem and are you still not feeling well and how are you now
that you aren’t working, are things getting better? You will feel like you are
constantly defending yourself and attempting to validating yourself to others.
(Gosh I hated that!) Trying to prove that I still COULD do it all and
feeling bad when I no longer was able.
Hostility, Anger, and more Frustration
Could also go here
again. Why me, why now? There is a feeling of total lack of control over what
is happening and anger that you no longer can do what you used to do quite
well. The inability to make yourself understood or to understand others. We
have anger at those who don’t understand and don’t seem to care. We feel angry
at ourselves for our own feelings.
Inability to resume a normal life
Because what was a
normal life is no longer possible. Everything has changed. Your life is upside
down. The helplessness and hopelessness you sometimes feel. You are still
trying to prove that you can function the way you once did and can’t or not
able to. You can’t see anything positive in your future. You are too focused on
the things you are not able to do.
Acceptance, when you finally “get it”
Nothing will ever
return to the way it once was. You recognize that the way it used to be and the
way things are now have changed. You need to rethink how you do things and
learn to accept help from others and admit your own limitations. You can accept
the dizzy days, the vertigo, the hearing loss, the inability to function
normally, and all else that goes with it.
Is when you see a new
way of living emerging and you are content with yourself and happy and can move
forward but on a different path from the one you were on. You make
accommodations and set short goals and realize that they may never bear fruit
and you are flexible enough to accept that. You realize that there is still
life in you and you just are living it differently. You begin to focus on what
you are able to do and not on what you can’t/not able to do. I have seen many
people going through these phases of shock to finally acceptance and hope. I
think that we see a lot of anger and hostility at times. I just say to myself
that this is all part of the process. This is how I feel about the phases we go
through, living with a chronic disease. I hope it helps others. Remember that
we are all individual in the way we handle things and when we see anger, pity,
guilt, that this is all part of the process before we can learn to accept our
changed life and live with it and refocus on what we have that we are able to
do. Some of us pass through stages over and over again or get locked in one
stage longer than someone else. We all pass through at different speeds and
that is fine. YOU are okay. This is NORMAL. It was only when I was able
to look back on the path I had traveled that I saw where I had been. I remember
writing this and giving it to my Dr. to let him know what I thought about how
this affected me. He and his nurse said they had made that observation
themselves about different patients they treated. I think he was happy to see
that I had finally reached the hope stage because I was a terrible patient when
I was in the denial, anger, and pity stages.
I wanted things to
change, I wanted answers and I wanted to feel better – immediately!