Apr 14, 2011 - 12:19 am
Having recently seen the follow up thread on 2011 roll call and finding no one has noticed that I am there - not sure if I count though as I am from UK, but find myself 10 years on from NPC with ever more problems when I am meant to be being discharged am being kept on the books.
These last two years have brought very painful neuralgia to my face- trigeminal and now also glossopharngeal. Also have had a stroke it seems 2 years a go when my handwriting and co-oridnation deteriorated and had my second this January, where they found evidence also of the first one on scan. Am on 4 different meds for very high blood pressure as well. My consultant has referred me to a vascular surgeon to do an operation on my neck to try and reduce the damage which is apprently really quite common after head and neck. Am saying this not to frighten people as I have thought twice about writing it- but to urge people to keep an eye out for these types of things as they do happen, although most definately not to everyone.also found out this week I am anaemic again. I have turned into this person taking 10 tablets a day that are completel keeping my body regulated and running and it is not as if they are easy to swallow at all.
See Hondo talks of crying a lot. I exactly know what you mean. I keep crying at the moment and am more frightened than I was at the time of NPC diagnosis. Really do not know what to do with myself.Even my consultant says I do not seem like myself as I usually take it all on the chin. My GP is getting outside of his comfort area in answering my questions as my problems and questions for expanation get more and more complex. Have nobody to talk to and my husband has progressive MS and feels he does not need mine. As I walked out of hospital following stoke this year, he does not realise the impact it has had on my thought processes and got told off for not understanding a simple instruction and was just told by him that I had a degree for goodness sake.No number of degrees prepare you for this.
You have no idea how much I crave to be able to walk down the street casually eating something or without clutching a water bottle.Even yawning is mighty painful and as for eating anything bulky- that is definately out. Normal life seems so long ago and I now feel frightened that I have yet another stroke, which I have been told is a very distinct possibility, before I have my arteries operated on.I just feel so alone.Please do forgive my slightly maudlin apporach- it is 5.15 am here and I have not slept all night thinking of it depite being really tired last night.