1 ½ year's update
Unbelievable, but true!
In 1 ½ year I have now
had my hyperbaric chamber at home!
From time to time I am
asked for a list of diagnoses again, here it is;
(documentation for it is on the old pages;-)
- Chronic Asthma /
- Spinal cord injury,
paraesthesia, paralysis, chronic isciassmerter after surgery.
disorders of urinary bladder after surgery
-Interstiticel cystitis /
Pain Full Bladder Syndrome
- Overactive Bladder
- Ehlers-Danlos syndrome
- Complex longstanding /
chronic pain nonmaligne
- Posttraumatic stress)
- Damage, irritation,
ulcers in the gastrointestinal mucous membranes due to EDS -
(can not be fully
investigated due to risk from EDS)
The list itself, and then
the conditions creates new symptoms, reactions when they provocates
eachother....makes endless lists of symptoms)
Here is an update;
SPINAL CORD, CRAMPS,
The biggest and most
- A big, dangerous
situation (almost) completely removed!
Having so violent spasms
from spinal cord for so many years, so massive as is the case here,
with so many injuries in the body. Muscles, tendons, even the tiny
attachments,warped distortions in the dorsal part, jaws, etc.. etc
etc. .. not to mention the pain that is impossible to describe –
No other drug has ever
been able to relieve or get the spinal cord to alleviate these
And just to mention one
thing that really created problems / chain reactions with the spinal
cord injury, my connective tissue disease EDS (Ehlers-Danlos
Syndrome) which makes connectivetissue diseased, broken, and bleeding
is generally difficult to stop, very big problems grow together and
to form lasting scar tissue, of course, this is a hugh relief !
And all treatments has
been completely abandoned for many, many years!
Gums - no big problems
with bleeding more. Before the hyperbaric chamber I could not brush
my teeth without major bleeding, pain and "sore gums"
It now looks normal,
healthy out. No wounds!
Because of problems in the
jaws, (including no cartilage in the joints and crooked hypermobile
joint, misaligned bite I've got two splints, one for night and one
for day time use)
SLEEP - and restitute
Now reaches about 6 hours
of sleep a day!
Have for over 23 years
maximum got 4-5 hours of sleep a day and big problems with general
being able to relax the body due to chronic seizures)
Recovery - a thing I had
FORGOT what is!
Being active and getting
tired - rest and be fresh again!
The simple natural
mechanism I have not felt since before 1991! - Before spinal cord
Suddenly one day, I could
feel I was well rested!
I felt like I had fetched
strength at rest / sleep.
Sleep has been a struggle
since the surgery in 1991. Pains have done I have stopped breathing
This is confirmed by sleep
analysis specialists and their all-recording equipment!
The little movement you
make with a single breath made me want to scream! So to lay
myself to sleep was a nightmare in itself and cost unimaginable
amounts of mental resouser - just to relax the body enough so that it
would be relaxed enough to sleep!
The feeling of being
rested is quite incredible - the little moment you wake up without
the requirement for immediate total self-control cause you feel your
body is under attack – you can feel the body not just total
”worked up” but actually .. a little .. recovered is amazing !!!!
I still have to master the
pain and careful movements but a whole lot easier now!
Not the constant massive
stress condition! Incredible!
To wake up with more
energy than I fell asleep - an almost unbelievable "thing"
to get back!
I am often asked about pain and management.
I will soon write a blog about it so be back soon ;-)
Incredible difference, as
a natural consequence of the restitution. Before I had to spend much
effort to control myself and force the body in the process of moving.
Now of course there is still a need for attention but I am quite
”different in mind” when the body is not so cramped anymore.
And not need the same
degree of self-control and coercion.
Has been much better. Not
the internal collapse that required maximum self-control not to show
too clearly - now of course I feel loads, energy runs out - and feel
the need for a break.
But not like the massive
pain stress - but much more normal reactions.
COORDINATION OF RIGHT LEG
- physical training
All people with different
levels of paralysis of the lower body know a lot about "unsafe
ground" and how nasty it is!
I can not go much
further/many steps than before, but training is a thousand times
easier today - I am different, far more secure, more stable and
rhythmic. ”Grounder” much better. My balance much better. Have a
strong sense of symmetry in the body now.
has been reduced
significantly, my over-kompenasation through the right hip less -
and therefore less painful.
My day has 12 hours longer
than before HBO !!!
UPTIME I mean !!!
Before I lay in bed most
of the time, unable to anything.
Even the smallest movement
could exacerbate or induce new attacks.
Had what I called a
"two-hour life," If I was lucky - I could only slightly in
maximum a couple of hours and broke so completely down with lots of
Is still get up very early
- mental work due to pain is still necessary but not so soon after
awakening and not so intense - then one hour in the chamber and then
an hour of physical training .. bath and breakfast .. so a little
rest and see what the day has to offer;-)
I can still get the ugly
days of violent, severe seizures
I think there have been 4
times with full relapse into how it was such CONSTANT! .. I do not
know how I survived it, quite literally
Severe seizures who looked
like epilepsy - and just as helpless .. it's amazing what you can
”manage to live with” when the condition becomes so extreme.
My spinal cord spasms and
"all related" respond quickly by HBO - and oxygen mask
beside ... the most amazing thing I've ever experienced - and
completely without side effects.
Still in the hyperbaric
chamber goes twice a day. My body loves the soft pressure and
responds quickly with relaxation, pain-relieving and refreshing.
MY LUMBAR have changed
shape, becoming much more normal in curves, not pulled out of shape
by cronic seizures!
Still needs a lot
physioptherapi - shoulder, neck, jaw, etc remain huge problems - have
had neck collar because a few very bad part of the neck.
ISCIAS - it hurts, an iscias treated as mine, probably always will - it is still a "too
tight elastic" but compared to what I have been used to, it is
now "pure piece of cake"!
........ I still needs to
look after and be carefull …
I am able to work again -
creative - now also with paint-brushes and prepares the exhibition -
I am overjoyed! Something I've missed quite a great deal!
Unfortunately I was
seriously injured in our front door a few months ago, so I am
awaiting a new type of wristbandages.
COGNITIVE - CONCENTRATION
Still need to use energy
and have focus on internal dialogue regarding pain control, but far
far more "space" to think of much more fun stuff. Do not
think so much to force movements etc anymore. Can especially feel it
when I work creatively.
SMALL WOUNDS - because of
EDS mixed connective tissue disease I will always have many more than
usual and will find it very difficult to stop the bleeding, etc., but
they heal much faster than ever before.
Still completely no use
of seizures asthma medication at all ... only preventive!
- now feel little
tenderness (asthma / bronchitis, damage after many, many pneumonias
and EDS mixed connective tissue disease)
Have a much more normal
breathing - can breathe more deeply and do not have the "infinite
breath" - where I felt I could not get enough air and where it
often sounded weird, reminded a dolphin sound!.
Are using oxygen several
hours per day and it ”gets better and better”
Just had an infection that
started in nasal septum (large hole due to EDS) and in a short time
developed a high fever
very well known, starting
with the infection in the nose and then into the lungs - especially
the left can be felt.
but BEFORE it would be a
typical-start-shot to one of the chain reactions I'm so used to, one
infection after another and it could drag on for months! This time it
was all over in 10 days!
A little fatigue after
pneumonia and coughs.
But without chain reaction
- at all!!
- is still developing with
unimaginable speed …........needs to be carefull.
OVERALL, the symptoms are
subdued to the unrecognizable - I will of course still be very
careful but DIFFERENCE is absolutely incredible!
SURPLUS for ”MINOR
EDS causes many problems
- with the sight for instance. I now have the energy to take care of
the much less important problems! As eyesight and teeth!
Has for many years been
lacking cartilage in the jaws and of course had pain when I ate
because it - sounds strange - stand and rubs against each other
inside the jaw joints! And a very large number of problems I did not
think was "problems" in relation to the other!
When I talked to my
dentist about it, she got a shock. And made a splint and felt
it was urgent situation! And then I was sent for further
investigation - a strange experience to see an issue being considered
and treated as acute (yes ok - you have a little difficulty eating
with no cartilage in the jaws, teeth so crooked there is no normal
tooth position etc - to see it be treated with as much seriousness -
which for me was so small a problem that I have not even mentioned
it! Proportionately drowned it completely in spinal seizures, bladder
spasms, bleeding and a general solid state of ”survival mode”!
- now only a little
sensitive to cold, wind, etc. But nothing like it was. Must use heat
mask outside again this year.
When one's overall surplus
increases can be immediately felt on stress symptoms and can be far
better tackled - I can very easily recognize the symptoms of stress
and change the situation they occur - or react different !
I am much more robust.
STOMACK MUCOUS MEMBRANES
Still having trouble with
mucosal irritation and ulcers - and therefore I react violently on
everything I eat and drink.
Still a big problem, but
"slowed a little down"
Still many aggressive
But generally a bit of
improvement, mostly due to subdued spinal convulsions.
They gave up the last
treatment in hospital - no good response,
I could not tolerate the
general condition - no comparison - I no longer live in hells
courtyard! On the way out of it.
Watching the massive
symptoms and the relative speed HBO has solved up to them - overall,
with so incredibly few side effects, it is incredibly such a
transformation has happened.
It took 1 ½ years to get
here. Unimaginably difference!
There are several small
and big things - an immensely complicated condition completely
Of course I am still
incredibly grateful - every day holds new gifts to open in the form
of things I can, things I can soon, or feel a change in!
I can never express the
tremendous relief, gratitude and warmth I have towards the help I
got! There is not a day unless I am thinking about it with the utmost
gratitude and appreciation.
It is an indescribable
process to get THIS much health back!
Thanks for the continued
interest and THANK YOU for help and support !