Ali It’s an easy yet hard question…

July 28, 2007 at 10:49 pm

it’s easy to put on a ‘good face’? But hard to explain why. Many have mentioned a ‘mourning process’ and, for some that is so. I do know I went thru one BIG TIME! at one point. Yet, the illness and problems, march on, and that it one frightening set of issues. Going to see a counsellor would do not one WHIT of good, as most have no concept of the differences that our nerves have done to our ‘normal lives’. Family, friends won’t ever GET it, unless they actually HAVE IT. It’s not fun trying to have non-pain/mobility med side effects discussions with friends when that is all your life has shrunk to. It is hard work thinking beyond that BOX?
When my docs ask me ‘How are YOU FEELING?’ I simply reply, as best as one can expect under these circumstances….because that is honest and as straight as I can be. I have good days and bad, moments that change hour by hour and I know I have no control over what happens or how. I just have to be careful how and when I walk, and where….do what I have to do on a sort of ‘paced-out’ basis or schedule then–get on with things.
What really scares me is that we are prescribed medications with the doc usually knowing little or zero about the interactions with any other meds I am on…I have found that many good and bad interactions have/are or could occur but not for their ‘timing’ in terms of taking them. I was almost prescribed a potentially dangerous anti-anxiety med [for another issue from another med] that could have cancelled the anti-seizure med I was taking for my pain….Our Neuros shouldn’t have to know about all the interactions that our other meds can cause, but, some of those meds are soo common they SHOULD KNOW, yet do not. The medication cross reference sources on the net are useless…as we are a total anomoly in these databases…
YES I get scared, Yes I get depressed, but I try to find out about all that effects and affects me to get to the roots of the causes of the depression.
As for the depression? Well, I can’t walk without thinking about it…I can’t even think about going on a plane trip…when would my legs work…or NOT? I really, really want to go and do something stupid and do some hard PLAYING! Like sleep deprivation, even grown-ups need to play and have fun?