So Many do not know what a day in the Life of an Intractable Pain SCI Patient Person is like.. Thought to give and idea and maybe some person or family can relate. Waking does not feel like It should it is more like coming out from being anesthetized..Very Groggy and Thankful it is so.. Because.. as you awaken The first sensations are painful burning.. ( Feels a lot like some one had switched out the blood for Muriatic acid.. Usually a fierce migraine helps by arriving to welcome the day. For me ( Not all suffer this..) Carpal Tunnel comes and makes its appearance.. It feels, like fingers are throbbing and burning..stiff and useless at least for an hour or so.. But the real Joy is the experience of taking the first few a steps of the day.. It is about the same as learning to walk all over again each and every morning..I have to will my mind to forget about the burning pain in hands and throughout body, and concentrate.. Ok , Now Right leg, Take a step forward, pause Left leg, and look for something visual to grab, because hands cannot yet sense tactile responses...The pain is Yet too great and legs often buckle or begin to collapse..with a pain that is simply indescribably delicious.. This is all very taxing and extremely tiring on the body...Pulse will shoot up into the 180s or so which usually makes the Migraine More fierce..There is chest pain that comes on... ( and for the first few Months or years The fear sets in : Is this it?? The Big One Elizabeth... Im coming to join ya,, Honey.. Live with long enough and You begin to Hope for the Big One.. and end this misery.. By This time You have either retreated to Bed.. or decide standing against a wall is Not where you want to be.. so Try a few more steps.. and If You are willing to go through agony.. You can usually make it to a semi seated position ( for me It is my desk).. Coffee in a half gallon bowl, Monster Absolute Zero and some meds.. In about an hour.. You begin to feel well enough ( About the equivalent of having been run over by a semi..) and You can think clear enough to type and check your message and to do list for the day. If it is a good day.. about 1-2 Hours will have you feeling as, good as Ity gets.. Now The remainder of the day.. You will only have to tolerate Muscle spasms, and deep deep pain In Neck abdomen, groin Legs and shins.. The Carpal Tunnel is down to simmering level.. Ready for the day..( I am one of the luckier ones ..may have came from Brutal abusive weight Training every day for years..) or just a simple refusal to let this own my life.. I get mobile.. Docs say Not for very much longer... But What do they know....If It goes to quadriplegia.. I am going to figure out How to make one last Swan dive with a triple Gaynor, and complete the dive landing directly on neck and .. with a little luck.. It will severe the last threads left of the spinal cord.. Bad Luck Is to survive the dive and then more desperate measures. The family friends and loved ones suffer.. by being helpless and the Doctors have you pretty well written off as dead..Sometimes there are strange emotional twists and quick temper...It does begin to attack the ability to think and to think creatively... But, If You run into to me, at any given moment.. You may see nothing wrong, at all..I am moving, speaking and acting ( with apparent ease and comfort) But, That is simply an illusion You project after years of dealing with this Hell! Worst Thing is.. To live in One of the most Inaccessible Towns On the planet..( Because You have to calculate Your energy reserves to small things like can I make it 50 to that storefront, and do they have a restroom?? A Handrail or a steep slope or stairs which may leave me trapped? The Good News ( sort of) Most IP SCI Patients Only last about 3-6 Months .. They dies from Massive cardiac arrest from the pain going through the roof and taxing the Heart with a load it cannot handle.. Me.. I am On Year 6 or 7 Now.. and Have No intention of going anywhere. I was a food critic for a publication we managed many years ago...So, I have now become a pain critic , of sorts.. Mild with some strange neurological symptoms, Or a Purely Blissful agony, served up with the exhaustion of battling this thing.. Bon appetit! Last, I checked Sympathy was somewhere between Shit and Syphilis in the dictionary and no where else. youtu.be/F3WIHtOmkBg
Posted on: Mon, 16 Jun 2014 14:31:34 +0000
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