the honest truth of who and where we are

I hesitated to write this, as pain, from the definition of it to the management of it, is idiosyncratic. Rather than draw hard and fast lines, I prefer to draw attention to chronic pain and offer my own personal experiences. I will revisit this topic periodically. Pain, specifically chronic pain, is at best disruptive and at worst all-encompassing. MS-related pain varies in both location and intensity, and its omnipresence profoundly affects us physically and psychologically. If we are to sojourn alongside chronic MS-related pain, it certainly demands not only our attention but also proper management. I live each moment with pain — from the time I wake until I eventually find sleep, I hurt. I say this not to invoke pity but to give you a glimpse into my world. I have worked incredibly hard at learning to co-exist with constant pain, and that learning is a continuum. Pain management literally has been a lifesaver, as I would never have learned the accountability necessary to util

Fuck, Fuck, Fuck, Fuck, FUUUUCK......... Awake at 3 am .......... standing looking up at the stars and asking for guidance. “DAD”, what would you do ???? “MUM”, What would you say to them. I actually almost hear their answers and debate. Well dad, it’s like this.... the type of demyelination I have is genetic. It’s in our genes and I’m hoping like hell my kids and grandchildren are not effected or technology will save them. Mums answer was “ what a load of shit. What would they bloody know? Go into denial...” Dad Just goes along with it all but I can tell he’s thinking.... My visit to the Neurologist today was a bit surreal.  It was a whack of doctors gently actually telling me. Not sending me off and still having questions. Ultimately, this is what we’ve been waiting for, all the tests and barraged appointments came together in this two hour visit. I’m actually numb. I’m actually starting to have spacticity seizure. Be right baaaack.... I’m back. Off the above writing