I know my last post months ago I said
would be my last but beside this being an outlet for me if I can help even one
other person who is struggling with any
type of long term chronic illness to
know you are not alone in all the thoughts you have along in your journey then
how can I stop. Not to mention it gives me something to do and concentrate on.
It also help to give me a purpose and somewhat meaning to the life I now live. Also quitting is not an option for me and I feel if I
do than the medical system has won and I won't let them win in making me
believe I am making this happen to myself or to many other stories I hear/read on
our online support group (s).
During therapy with my therapist who deals with the chronically ill yesterday (this took me two days to
type) we talked about what causes our bodies to manifest stress from a mental state
that use to be so easy to overcome to a physical change and why our bodies
react the way they do. Good question
and one that if it was so easy to
understand and figure out then I could cure most people who have SPS or think
they have it who are lost in a vortex of a condition that so few understand
except for the ones that experience it as their muscles twist and turn into
violent and unrelenting pain. Not to mention can quickly take a turn to be a life threatening situation and
being unsure when to make that call for help. Ask anyone who witnesses a person going into a Stiff Person Spasm and
they will know what I am talking about, it is a fine line of knowing when to
make that call or try and ride it out. Being rushed to the hospital having spasms and trying to explain to them what they need to do as most if not all will have never heard of this condition and do not realize how quickly it can become life threatening. Nor are we trying to seek medications that can save our lives, that a few have made it difficult for those of us not seeking to get high from.
Prior to my session and as I stood up to go into the
Doctors office the fire alarm went off and unexpected noise like so many of us, triggers my body to go into
violent tightening of my muscles and the most excruciating pain one can only begin to imagine unless you experience it first hand. Lucky for me the worse of the spasms only
lasted about 10 to 15 minutes and although throughout the session the odd
muscle would tighten by trying to relax
and concentrate on the topic at hand I kept myself on an even keel during my
session. The worse part to me is unlike my medical system I know and
understand because our bodies have been put into this state that the
body fights to keep you in that state and any little thing will set our bodies to go off
again at any moment. ( it's very hard
to explain to someone who cannot comprehend nor will take the time to educate
themselves when our medical system is so over burden with more common conditions then those of us who have SPS, sadly) I and everyone who has this condition can
attest this defiantly is not a condition for the weak as it could, can and will drive you crazy if you allow it. It also does not help when the medical field
at least where I live does not understand that not everyone will be a typical
case and that there are many variants and no one fix is a cure all to curb the symptoms that will creep up at any
given moment.
Under our medicare it has been determined that I will
receive 10 session and then I will once again be left to my own devices or if
we had the money I could pay for private session and anyone who is on a
disability plan unless you live with someone who makes a higher wage (at least
in our case) or you have no debt in life
cannot afford to do. I bring this up for
a few reasons if you live in a country that covers unlimited session count
yourself lucky. Another reason to
educate people at least in Canada who think everything is covered once you are
forced into dealing with our medical system you are sadly mistaken and this is
a warning before you receive news you are not expecting. I am also going to share today's lesson for
many of my friends who I know who are not covered where they live and too I
know you cannot afford the help. I hope
it helps you, writing can be as helpful as the medications we take.
So for the next two weeks until my next session (and
going forward for my own personal help when I have to work on this on my own
again here is how one tracks their triggers. This too would be good to take with
you to your doctors' appointment and leave them a copy that they will hopefully
read). I am to pick my most stressful
event of the day (keep in mind it can be a good event too as that can be a
trigger for us, I can go into spasm just by laughing!) and make note of it. Some days may be from the low end to the high
end of the scale, and pick a time when you are able to reflect back on the
situation and write about it.
Make yourself a spread sheet or grab a note book and make
6 columns:
Column 1. Mark the Date
Column 2. Event (asking yourself the 5W's Who? What?
Where? When? Why?) and write down what applies
Column 3. Emotional Rating
the scale is rated 0= Not At All, 1 - 4 = A Little, 5 - 6 = Moderate, 7 - 8 = A Lot, 9 - 10 = Most I've Ever Felt
Column 4: Emotional/Feeling Reactions ( you can have more
than one E.G.sad, anxious, angry, even happy etc)
Column 5. Cognitive Reaction (thoughts- what is it that
makes this event so upsetting or ask yourself why is this bothering me?)and explain why
Column 6. Outcome (What happened after initial reaction?
What did you do? ( e.g. cry, argue, stomp off, grit your teeth and go ahead etc)
or in our case Then What Happened (did it trigger a spasm and for how long? what did you do to get out of it)
Using my example above when the sound of the alarm
triggered my spasm was my most stressful event of the day so that was the first
example we use for my tracker as I was in the 9 - 10 range. We were able to identify
the what, where, why and when. My Cognitive
Reaction was due to the high pitch scream of the alarm going off unexpectedly
causing the startle responds. The
outcome was although my system was still in a hyper state I was able to control
the worse of the reaction through using meditation techniques we have been
working on prior to this appointment and from them closing the door so the
sound was not so strong as when the door was open and getting me ear plugs to muffle
the sound.
This little exercise I think would help anyone not just
those of us with Stiff Person Syndrome but any condition you or someone you know is
battling even the healthy friends I have.
It's worth the effort I think and I hope it helps you and your doctors
who are not listen to you to have a better understanding of what is going
on.
