Frustration

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.

Previous Post
Leave a comment

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: