Health wise I am doing okay. I went to see my liver doctor in December who said that my liver enzymes are almost perfect again due to the medication I am taking. My last ALS clinic visit was at the end of November. My breathing scores had actually improved (I think I'm learning how to take the test) and my speech and swallowing are still working fine, I've always had a strong voice! My strength, however, is waning and I cannot lift much anymore, nor walk for any distance. I was encouraged to use my wheelchair more often as I am still having difficulty accepting it. The nurse could sense my apprehension and stated that I have a Type "A" personality, which I'm pretty sure was her way of telling me I am stubborn! It is true that I have a hard time relaxing, resting, without "doing something" or feeling productive and physically now I have no choice. Not so easy changing your personality!
We are moving! The building next to us is finished and upon seeing the new units, we realized what we were missing in ours. We will still be the end unit, but luckily on the 9th floor with no building beside us with people able to see Travis making coffee in his boxers (their loss!). We chose to move for the bathroom ensuite with a walk-in shower, with a seat in the shower. Showering has been the one thing that energizes me and gives me life during the day and this will help maintain that independence as long as possible. We are also gaining a walk-in closet, it has been a problem that we have nowhere to store my wheelchairs, so this is fantastic. Also, we will now have room for a dining table, again facilitating the use of the wheelchair as now we have only stools at a high counter. Most importantly, the second bedroom has a window and a full bath, so you will be comfortable when you visit! Move-in date is May 31 and will be much easier than the last one as we are going from elevator to elevator and don't even have to go outside, yes, that may have been a cheeky shout-out to my moving crew, if you're free ;)
Another thing that has changed is language. Because of our reality, Travis & I often speak about death in a realistic, practical way. I was so grateful to have seen the last Hobbit, because when we saw part two last Christmas, I wasn't sure if I was going to make it or not to see this one. Also, when renewing my passport, I had to decide whether to get the 5 year or pay more for the 10 year (I optimistically chose the 10 year). When signing the lease for the new apartment, I was worried that if I live too long, we may not be able to afford it! It is a delicate balance between not giving up, and accepting reality. In fact, in my therapy practice we try to teach others that black & white or all or nothing thinking is just is not the way of the world, and can really drive you crazy! So if it throws you that I joke about my demise, or are taken aback by my frankness of the illness I am living with, know that it is a compliment, it means that I can be myself around you. I promise I am not giving up, Bilbo taught me that if you are surrounded by Orcs, you can still throw rocks at them.