Yes, it’s been a long time and so much has happened. And I am out of balance.
This is going to be long as I have lots of catching up to do.
I have had good luck with the Ampyra, no side effects. I am able to stagger longer. I actually am able to walk longer than previously without staggering. I may have plateaued but am not sure. I do seem to be picking up speed. This is relative. I used to walk a 17 minute mile easily. I have walked more than I have in over a year.
Now that I have this drug/tool I need to work on the surrounding bits like diet and exercise to maximize the impact of the drug.
Which brings me to the being Libra/out of balance bit. As I am regaining some mobility I have been reflecting. I have wanted to write for ages! But…. As my walking has minimally improved, I am realizing how narrow and unbalanced my world has become. I know part of it is due to the mobility issue and the rest I am not sure. I wake a little after 4 a.m. Monday through Thursday. I am out the door usually by 5:25 a.m., in the city before 7 a.m.; at my desk by 7:30 a.m. I leave at 3:18 p.m. I have shortened my hours. I am trying not to cut off my nose to spite my face. Most days I work straight through. I then struggle to make the 4:12 p.m. When I was well, if I left that time and walked, I would have been on the 3:46. Since the Ampyra, it’s been a bit better but some days I can barely get myself onto the train. I get in the door around 5:45. I check my work email since I am conscientious. I have mostly checked my email, F B and blogs on train. My husband has the news on. I make a smoothy and/or salad, pack my lunch for the following day, oh yeah maybe fill Tom in on how my day was. By this time, it’s nearly 8, time to take a bath and get ready for bed. I used to go to Zumba twice a week but with winter that stopped. I read in the bath. I used to read a book every two days or so (seriously, I need to read to live) write letters, call friends and do things like hobbies. Ok, I did stay up an hour or so longer and sleep an hour so longer. I almost never watch a TV program from 8 -9. I never used to see programs at 10 but I could watch between 8 and 10. Yes, I was a little younger, too. But lately I feel really out of balance. As a Libra, funny as it sounds, it hurts even more. I need equilibrium.
And what else can I deal with? Well. I have had dense breasts for years. I always picture them as saying d’uh. So years ago, in the beginning of this downward spiral, my mammo showed something. I told them I had fallen and it could be a bruise but no. So I had a sono and they said biopsy. I had this December 23. New Year’s eve they said it probably had been a bruise. 6 months later, it was the other breast. I call them equal opportunity breasts! It took about 2 years but things finally calmed down. So went for my mammo two Fridays ago and received a voice mail at work on Monday. Husband says it’s nothing. I said they don’t call if it’s good news. Who was right? Me! I wasn’t giving up my time off so next Friday more studies and a sono. I am trying not to think about this. I just can’t take much more.
On a more positive note, even though I am not liking my job (another blog) I am getting more projects. I don’t feel warm and fuzzy. I did apply for a job close to home. I usually don’t like working close to home. Snotty me thinks they are much too insular. You make less money and people think less of you as a woman working. Seriously! All that being said, I am in discussion with an LI company. It would be less than 20 minutes from the house. Ironically, I would have a longer work day. I am slightly optimistic but nervous about showing up with a cane. My argument – I commute and there’s nothing wrong with my brain!
I did get my new spectral leg on Thursday morning and have high hopes. But even though it’s thinner, it looks more permanent. I haven’t really worn it as I am on holiday over 100 miles from home and didn’t want to drive with it untested. I have walked lots. Yesterday over 4 miles, which for me right now is awesome.
Today we went back to Hyde Park and a park ranger suggested to my husband that we could get a wheelchair to use there for free. I thought I was walking ok, not great but alright. After he left I started to cry. Is this what I have come to? Is this how people see me? It’s not how I see me. I don’t want this. We were at Hyde Park and I felt if FDR could be president, persevere with polio, what is going on with me is piddling and surmountable.
Back to staying strong and moving forward, literally one step at a time.