Every once in a while listening to the plans and yearnings of the young are eye opening for us It’s how we connect with what they are comfortable sharing … or so uncomfortable or unsure of emotions with in a relationship. try to mostly listen. If I have something relevant then I share. It’s the flip side of what I am now certain my children felt as minors in our household. They endured the many varied discussions about those topics that were uncomfortable.
I know my family worries because in our town we have no one who are really close friends and supports. They aren’t people likely to be able to step up to help us if we both begin to have issues, for frequent socialization. This is a town of shrinking population whose finances are on average below middleclass or barely middleclass. The terrain where we are is quite hillside. This adds some risk for walking with that being a tad unstable as the ms progresses. It is quite inconvenient for my family who live about 40 minutes away to pick me up, take me to my appointments of about that same distance, bring me back and drive that 40 minutes home again- it’s pretty much most of the day affair. I am frustrated. I do understand their point with that. SO I miss more doctor’s appointments than I should.. My husband ,however has become the immovable force who sees all that the positives (as well as some I don’t really seem like his firm logic. He has gone as far to tell me if I were to move he would stay here regardless where I relocated, regardless of the job opportunities. Blows my mind.
SO when this subject is touched on, it goes best in my husband’s absence. My younger daughter is a nurse who looks at it all from a health standpoint, particularly for me. SHe has seen the little slides that go under the radar/ by most of the others close to me. I can’t even calmly discuss it with him as he gets furious, having planned years of updating and repairing this house. I am at a loss and really do not know what to be done about any of it. So meanwhile I listen to her points and I try to help her see some of the issues we face but it is as equally difficult to explain to her his point in staying here.
It’s funny to try to conceive of needs down the road. It ought to seem natural at this time of life with a disabling chronic progressive disease. AS always my mind is of two very different directions. There is the part of me who wants to stay out in the country. There is the practical side of me who wants to be in easy access to the various places of necessity to maintain independence as best as possible. Good Lord! I can talk myself into and out of nearly everything. This is also not a helpful trait in this case.
Of course I must confess that as an adult I have moved about every few years. While being a bit rough on the kids, now that they aren’t at home ,wouldn’t this be the time for such moving? How I wish I still could work as a nurse. This would allow my husband tobe less concerned with his having to worry about work needs. And I keep returning to this in frustration. This is a pointless point to revisit as it just doesn’t appear it will happen.
Between the pain and exhaustion, I am definitely fighting to hold my ground. It is a fight which leaves me defeated at times. Other times I feel it is not insurmountable. Having slept 2 hours last night battling restless leg syndrome and agonizing pain in my spine has left me at a disadvantage today. Some days are just uphill… parts of days are uphill. Right now that is where I am operating from it pays to break it down. It may turn out to be all day , for days, or weeks even- but there is no point reading into it as such. Believe the best, decide that you will handle whatever is coming, and work through as best I can. That’s all that’s left to us at this point. There are those who may see that as too resigned, but I have watched so many yo-yoing on the bandwagon of all is possible and I WILL make it all happen – and the inevitable lows of the crashing hard. I cannot base my happiness on the state of my functioning at the moment. I won’t do it. Life is too precious and far too much is wasted by those who believe they are shortchanged and locking themselves into their habits and medications, movements be totally dependent on getting out of pain as most possible. Okay for now it is time to move along with the day before addressing my other blogs. I really must apologize for any detachment or disconnection felt in this post. For those who have been through this…it is operating from behind my eyes… a day late and a dollar short.