(may)june-juli-august- september 2012
I have now had the chamber home for 4 months - BUT as I spent the first month of habituation and there really was nothing more than this "habituation" I do not think it "count" but this is what has happened the last 3 months;
The first sure sign was that feeling of weakness, uncertainty in my legs - sure sign of relaxation of the cramps ! Remember it from treatment at the hospital.
Need for resized catheter to empty the bladder.
I SIKer (Uses sterile disposable kathethers) - In 1992 I started with a large, str 14, 12, and then I had to go down to 10 As the convulsions did my urethra narrower.
NOW - as relaxation start - I can now use size 12 again!
"PAIN IN GENERAL"
- Slowly, slowly going downward!
Still extreme, massive pain, but feel clearly a great help of oxygen, both acutely and in the decompression chamber!
I have a much better feeling of the skeletal part of the body - also "the-nerve-atlas"
My body is no longer ONLY fragmented parts I can not stand to feel the consistency of because of the overall level!
The pain is still there but the body now consists also of other "experiences".
My body is now ALSO a symmetrical whole.!
The pain from the joints throughout the body, all the small and large joints and tiny attachments and more - a slight improvement!
Far better coordination of movements - it's hard to have a body part that feels as if it has been buried in ice for more than 20 years and the rest of the body burryed in red-hot lava - and some parts are paralyzed, others with large sensory disturbances .
It is difficult to "live" in such a body - difficult to grasp the constant flow of various pain and the chronic shortage of peace!
- Much better now - again, the pain is almost the same but much better overview and ability to accommodate the different signals.
Balance has improved, still traines it more and more focused.
Have completed now about 4 hours to my day- meaning up of bed! That is a lot of time !
Have been able to drive in my wheelchair out in the yard many times and sit and relax - it's 3 years since I last just "sitting" out there eventually! Still have all the symptoms but much better feeling that I can manage to hurry inside if it is nessacary!
Concentration - is better, has a better overview, without much effort.
Can watch a movie now and almost retell it - before it was just (because of pain level) ”background-noise” !
The cognitive ability is enhanced.
My sleep is better, still only about 4 hours a day but dreaming again in colors.
Minor bleeding from the gums - and not so painful gums more!
Have had embroidery machines going again - that is started with a little creativity again!
"FINGER AND WRIST BANDAGES"
Can now use less rigid rails without going so quickly out of joints as before
-hand is still almost useless, but coach them still cautious.
A great relief to be able to use a little softer bandages - one's fingers, hands and wrists are especially hard to do without -- You have no idea how much movement and how much you use them every day - without thinking about it until you no longer can-and they must be heavily fixated !
... Still a big complicated problem! Impossible to describe short - but generally there is "turned down" for strength, just a tiny bit but it IS a downward trend! - Both of urger, pain, cramps and otherwise just generally ..
.. Bladder area is less dominant in body-image!
My protective layer on the inside of the bladder is damaged, among very, very many other problems - but the feeling of having burning acid in the open wound is a bit smaller.
The large blue-black marks, mostly on lower body "shrinks" - becomes smaller and lighter!
- So less bleeding!
Asthma Medicine - still use preventive - but reliever is almost forgotten - have used it twice over the last four months! Regardless humid weather! Before starting treatment, I could easily have needed it up to 4-5 times daily.
Has been easier to breathe deeply - still have problems with the left lung. Still pain. But much much better!
Have more energy especially after hyperbaric-total estimates sense of supply of energy that feels absolutely fantastic and I can associate, as suddenly a little later to return to the familiar exhaustion! And may lie down and try to get control again. A little confusing at first - had to really learn to listen to the new tones the body suddenly talking - but exciting.
Some days less vomiting - (usually number between 10 - 12) Some days only 8! Reacts still very strong on food but fewer vomiting is a major discomfort less!
Unfortunately, there are growing big stomach mucosal irritation? Ulcers? - At least strong reactions to food and many vomiting with blood. Hard to investigate because of tissue disease !
The tension - the intensity of tissue has been a little softer - because of the cramps has loosened.
Cramps from bladder and back - downward at rest - can feel immediate increase again to familiar level by movement, sneezing, coughing and exertion.
Lumbal spine has changed - has become more relaxed, have otherwise among other things, had a very heavy aggravated lumbalback (after catasthrophe-operation and due EDSsen) it is now loose - which is said to be -
TOTALLY UNBELIEVABLE - the difference can be seen with the naked eye !!
There is a need for modification of the cross!
GREAT TO FEEL THE CHANGE!! Even the little ones - when the condition and the symptoms are so massive, even the smallest palliatives is fantastic! Still many many health problems, but quite incredible to be in the middle of this !
They last about 6 weeks I have had infections, and have felt the good effect of oxygen. Have not been so exhausted as usual.
It does not matter I still have to be patient, it will take a long, long, long time for my body to heal and get healed up and become stronger - but it's a completely different life beginning to rise in the horisont!
The thing oxygen therapy addresses are the cramps, symptoms from tissuedisease and pain-that is the root cause of my problems!
I still cant do much "more" than I could 4 months ago - and as soon as I forget my limitations it has consequences, and I'm back in the same condition as before - but I am happy!
Think to find and get access a treatment you can get in your home that works SO incredibly in all things, without nasty side effects! And still remembering all the help and care I have recived I is still very very heartwarming !
I've had big, big problems with the equipment - oxygen masks in particular.
It is a hard for me to fit into standard - a problem I unfortunately recognize from almost anywhere else in life too!
It has required great perseverance to continue to try to find solutions - and again - no help to get here.
Difficult and at times very frustrating! THANK YOU FOR YOUR INTERESS !!!
Again, my foreign helpers been incredibly amazing and made an incredible inserted to help me!
It really makes me incredibly grateful.
For me it is good to take an hour of treatment very early the morning and again about half an hour later in the day - it gives new energy and relieves both cramps and pain, which is far more TIME is not just about fighting symptoms and survive!