Well it has been a while! A lot has happened since I last blogged. Almost 2 years have passed. Per the title of this post - I turned 50 (!) in July which was quite the milestone. It is both wonderful and frightening to be 50. Wonderful because during my late teens I wasn't sure I'd survive this long (pre-bipap days when I was in hospital a lot), and scary because I am not sure what the future holds with regard to my strength and respiratory function. Then again do any of us really know what the future holds regardless of whether we have a neuro-muscular disease or not?
I am definitely getting weaker with aging and feeling more fatigued but I am trying my best to do what I can to forestall it. I started physical therapy again a couple of months ago and am trying to be disciplined about doing daily exercise routines. With the weakness, I have been struggling a bit psychologically with fears and anxiety so I am taking myself back to therapy in a week. I need to talk it out and find strategies to stay out of that black hole more regularly.
I am also trying to embrace other forms of help out there to enhance my life. My wonderful pulmo doctor drew me a chart a year ago. On it were two circles, a large one and a small one. He said that at some point when my mobility became difficult (I think I'm there now!), I would have to make a choice whether to live in the small circle (reject help and stay home, avoid social outings etc) or the large one (embrace all kinds of aids like walking poles, scooters etc) where I could fully enjoy what life has to offer. Well, on vacation last week in Ocean City, Maryland, I took a great leap into that large circle by hiring a beach scooter to enable me to easily access the beach without exhausting myself walking in sand and all the attendant anxieties that follow. What a difference it made! Check out SandHelper if you are going on a beach in NE USA - I highly recommend renting one!
Hard to believe Summer is coming to an end and the awful days of winter are soon upon us. I intend to make the best of every sunny, warm day until then...