Long long ago I read a book for the first time, I have read it several times since. In the book was a line, Fear is the mind killer. Probably not the exact line but good enough for my purposes. It follows a scene where Paul Atreides puts his hand in a box and starts to imagine his hand burning, it was just his imagination. Only his imagination, nothing else, imagination. During my worst months of Trigeminal Neuralgia it felt like I was being stabbed repeatedly by an Ice Pick in my face. Not real pleasant but the pain was real but the Ice Pick was only imagination.
A very unpleasant thought and nothing would change it, except me. I started to imagine being on a beach with waves falling on me. The bigger waves were the really stabbing pain, but like waves, they eventually fell away. Then being waves they came back again. Do this for several years and “YOU” can very slowly learn to cope. There is no need for fear, “YOU” know what is going to happen. Something is different, then appreciate the newness. Learn the disease, its in and outs. Learn that the wave is coming and that it will crash down on “YOU” This WILL happen there is little that “YOU” or anybody else can do to stop it. This is Relapsing Remitting ms (RRms). It has some rather painful moments, no matter what any expert tells “YOU”. I can assure “YOU” from personal experience that it sometimes hurts. That is a part of our condition. Medicine sometimes takes the pain away briefly, but too many drugs do lead to unfortunate events. I say this having had Ambos (Paramedics) take me to the hospital several times from drug overdoses. It is amusing knowing what is going on around “YOU” but not being able to speak, which is an excellent reason for keeping notes about what drugs “YOU” took and when.
There is no need to fear, knowledge is power. KNOW your disease, better than the back of your hand. There is no need to know all the big words, that is why we pay professionals a lot of money. But, “YOU” should have a very good understanding of what RRms is doing to “YOU” and how it is doing it. This may help if somebody says they have this great cure that only costs XYZ dollars. How can I be cured if they can not tell me exactly what is broken and why? Our illness is chronic and incurable, today. Maybe not tomorrow but today we get to live with the uncertainties.
Arm yourself with the best knowledge there is available to “YOU” today. Open a book, sorry the internet and dive in and learn things that completely befuddle “YOU” Get that chart of the Central Nervous system (CNS) and follow with your finger where nerves go and where they start, hint it is the brain. Your bladder is unreliable, follow the nerves back to the brain. Perhaps “YOU” have lesions in that area. That explains why “YOU” have problems with your bladder. “YOU” are wearing your protective underwear aren’t “YOU”. Study this condition like a ten thousand piece jigsaw puzzle. At first it is just a large jumble of pieces. “YOU” have the time, start with a straight bit and start creating your very own puzzle picture. There is no need to be in fear, this is a rather large job, best “YOU” start doing what needs to be done to create your picture. Relax though, I have been working on mine for over twenty years and I have not got a complete picture. The pieces keep moving and new ones keep showing up. That is alright, I am not sure that we are meant to ever completely solve this puzzle and I accept that, perhaps “YOU” may as well one day. Have flexibility in your approach to your illness. Be like the policeman in the terminator movies. Adapt, adapt, then adapt some more to your changing condition. Do not be a rock, RRms will break “YOU” be like Terminator, like water. The Grand Canyon was carved by water “YOU” know.
Royce
One day at a time, one piece at a time
