Chronically Confident and Competent

Someone said to me recently that if they didn't read my FB statuses they wouldn't know I have things like MS, Tachycardia, PTSD, anxiety, osteoarthritic leg pain w knee replacement, complex medical things interacting. I look so competent. Yeah. Made me think. Have always tripped over the issue of me looking competent and confident coupled with struggling to ask for help, or even recognising I need help. The MS is a hard one as it is obvious when it is acute but not so obvious when little clusters of things occurring nor so obvious when the chronic ongoing nature means it is just there all the time. It is a struggle to find or attempt to find the balance of saying and not saying, or reminding,educating, reeducating. Then there are times I want to be quiet and invisible about it because talking about it is to hard. I have been reminded that when I say to people I have MS ( and lately have been tempted to have it permanently tattooed on my head so people can see that), that doesn't always have any meaning. MS is different for different people. So.. here goes. Summary: For me.... at all times I am in some kind of physical pain. At any time you ask I could name in which parts of the body where the numbness, aching, stabbing sensations, sharp pins and needles, itchy pins and needles, muscle flicks, throbbing, burning pains are, and I am usually having trouble with swallowing and feeling the parts of my face and throat mechanisms needed to play trumpet and sing. Thats the chronic ongoing stuff. The fatigue is chronic fatigue, not tiredness. Paracetamol and other pain reliefs don't stop these pains. When in an acute episode one or all of these things intensify. This is an exacerbation if its only for a few days. A relapse if over three days. What I live with after each relapse ( about 2 a year) I go back to a different bottom line of pain. I think that means I am slowly progressing. The relapses are random. I also can get episodes where my hearing and vision are affected. Those pains can be there all at once, they can be in clusters, they can be on their own. I overheat easily. I also have cognitive problems re understanding logic, conceptual etc and it gets in the way of remembering and learning. Music is my main therapy for all this as I can control a lot of what I do, plan how I teach and get huge pleasure from the results. Throw in random attacks of gall stone pain which is like some episodes of MS stabbing pain in the intercostal muscles, tachycardia events requiring emergency intervention and PTSD (which exists because of child sexual abuse) flares. It is ironic that the effects of child abuse has meant lots of therapy around surprises, hypervigilence, de stressing, recognising and managing triggers, lessening the likelihood of surprises and I have ended up with illnesses that do all those things. Or maybe its correlation rather than ironic. I think sometimes there is causation operating as well. Whatever it is, I live with daily physical pain, in a chronic way, with random attacks of acute from various illnesses, which all scares the shit out of me a lot of the time, and if I am appearing confident and competent, I probably am, but just may be overcompensating to prove something (to whom I don't yet know.) And right now where I am at with all that is, I need to be considerably better than I am in order to be stepping on a plane in 41 sleeps time and that feels incredibly un -fu&&ing-fair.