Week 41 of this blog
Week 134 of this situation
Weight: 51,5 kg / 114 lbs. (Oh yeah!)
Last fall: 71 days ago (Oh yeah! And… fingers crossed, knocking on wood and all that!)

The last two weeks have been rough. Again.

After the workshop sadness I wrote about in my last post, I bounced back for a moment but then… I’m not sure what happened, I think it started with not sleeping well. Again. I was sleeping okay for a while, with my meditation and calmvalera drops and sleeping tea and lavender. But for some reason that stuff stopped working and I couldn’t fall asleep and had horrible nights with a lot of waking up and pain and spasticity in my legs and lower back. That’s been a problem during the day as well: I get so stiff and it’s painful and makes me want to not move but not moving makes it worse. It sucks: I’ll been lying on my couch, relaxed and not moving and pain-free, but I know I have to get up eventually and the longer I lie there without moving, the more painful it’s going to be once I do get up. Sigh. And the scariest thing is… My speech has been getting quite a bit worse as well. I wonder if that has to do with being tired (I hope so!). I have to speak more and more slowly and I find it increasingly difficult to enunciate clearly. And… My gag reflex is out-of-control at times. Things like putting in my bite guard (which I’ve had for years) suddenly set off my gag reflex. This may have nothing to do with anything but I know that trouble swallowing can be a symptom. It’s unpleasant. And a new level of scary. I feel like, my arms and legs, fine – but speaking and swallowing?!

I’m still taking my Ayurveda herbs. And that’s where the frustration comes in. I was told that it would take 3 to 4 months for the herbs to work and it’s only been six weeks but… Well, it’s been six weeks. Of taking this stuff six times a day: at 8am, 9am, 12pm, 4pm, 5pm and 9pm. Remember how a while ago I said I needed structure? Well, that’s been working out juuust great… This stuff is controlling my life. And one of the things I worry about when I can’t sleep at night is the fact that I won’t to be able to get much sleep during the day because I have an Ayurveda-alarm going off all the time. And I have to eat (at least that’s working and I’ve gained some weight!). So I feel stressed and frustrated. But… my therapist asked me what I wanted and the thing is I don’t want to stop taking the herbs. A lighter schedule would be nice but the main thing is… I want them to work. I don’t need a miracle, just the tiniest sign that it’s working somehow. If the disease stopped progressing… Hell, I could take herbs 12 times a day if I felt that!
Not yet. For now, I’m afraid there’s nothing to do except stay calm and patient and try to relax. Meditate. Trust. This too shall pass. And in a weird way that feels okay too.

PS: I have an appointment at the ALS clinic tomorrow at noon. Let’s see what they have to say about swallowing and spasticity and sleep. Wish me luck.

It’s a fine line

I’m skipping the numbers I usually put at the top because what I’m writing about today happened about three weeks ago in the second week of June.

I had been doing really well for about a month and had thoroughly enjoyed that. Thankfully. Because that week showed me (yet again) how fast things can fall apart. The week started with intense heat, temperatures of about 34°C/93°. (Apartments in Germany generally don’t have air conditioning.) A lot of people struggled and I was one of them. But in addition to feeling weak and exhausted I was also struggling because everything was so sweaty and sticky. For example (and I’m sorry if this is too much information), it took me an extra 30 minutes at night to wrestle myself out of my sweaty T-shirt and bra before going to bed. That sort of stuff. Makes it difficult to stay happy and positive.

And the following weekend…
I have to give you a little history: I am/was a Pilates trainer. And every year for the past nine years I attended and/or organized workshops with an amazing master trainer. The last four years I organized the workshops in Berlin and it was so much work (what with my perfectionist streak) and I bitched and moaned about it but the truth is… it was so worth it! I loved those workshops! It was such an inspiring community of Pilates trainers and we learned from each other and from the master trainer of course and it was wonderful.
And that weekend the workshop happened without me for the first time. I don’t really know how to describe how sad I was… very, very sad. And I felt a little stupid because I didn’t see it coming. Everything Pilates related seemed so far away and I thought I was done crying about it. Well, I apparently wasn’t. I really felt that loss.
But… Someone told me that sadness is a relatively easy emotion to deal with. Things like guilt or shame are much more difficult. I forget how she explained but it made sense to me. I was so sad but I also felt a lot of gratitude for having had something that I could be so sad about.
So thank you to my mentor (you know who you are) and all the trainers who attended the workshops!