April 9th, 2016: Time for an update. Some good news, more bad news. (reposted from Facebook)

Nausea, diarrhea and weight loss in February. My doctor took a stool sample and the result was fantastic: an explanation for my problems (my healthy gut bacteria were severely out of balance) and an easy treatment (take a combination of certain probiotics). I felt better almost instantly and started gaining weight. That was at the beginning of March.

But then… my dad got a cold. And then my mom. And then I did. And then one of my favorite nurses… broke her arm. I’m not making this up.
My cold was horrible. I had to take antibiotics… So long, healthy gut bacteria. And hello again, nausea and diarrhea, can’t say I’ve missed you. As an added bonus, I was unable to take antibiotic pills, so I had to take a children’s syrup with a lovely fake chewing gum flavor.
And I had a cough. And codeine cough drops. But here’s the thing: my lungs are holding up pretty well (I had another check up with the Professor in February and he was quite pleased again) but my breathing is compromised, so I was only allowed to take very little codeine. Five drops which gave me relief for about two hours three times a day. Not much. The rest of the time I would lie on my right side, the only position where I didn’t have to cough. But that of course got uncomfortable, partly because I’m so bony! So I would lie on my right side as long as I could until the pain especially in my shoulder got so bad that I would rather face a fit of coughing and trouble breathing. Then I would get up, get the coughing over with, sit for a little while and lie back down again. Thankfully this only lasted about three days. And nights.
But the worst part was this: you know when you’re so sick and feel so rotten that the only consolation is to think this too shall pass and soon I will be healthy again? Well, I don’t really have that. I have life as an ALS patient to look forward to, almost completely paralyzed, trouble speaking, trouble swallowing… And I still feel that: I’m over the cold, fixing my intestinal tract again, my weight is 43kg, and I’m so exhausted and wondering what’s the point. I will of course do my best as always to dig myself out of that hole again, especially get my weight back but… I’m not feeling it.
My biggest concern right now is my neck. And my upper back. The muscles have gotten so weak that I just can’t hold my head high anymore. Most of the time I literally don’t know where my head is supposed to be, except for a few glorious moments at the end of physical therapy. Or when my osteopath sets my head straight. But most of the time my head has to be supported, either by leaning back on something or with a neck brace. And it’s really shitty, I get dizzy and headachy and my neck feels tense. And it’s interfering with my exercise program: I used to go walking every day, with support and only about 100 meters but it was so good for my legs and really helped control the spasticity. But now I can’t do it anymore because my neck gets sore. And the neck brace doesn’t help much because then my upper back collapses. I have a back brace too but by the time I’m strapped into all those braces I’m exhausted and have to take a break, meaning the whole process to walk 100 meters altogether would take about one hour, followed by a one hour nap, and I don’t have that kind of time.
Thankfully my voice has recovered a little. Speaking has been difficult for over a year, meaning speaking clearly and understandably and forming words. But the shocking thing that happened at the beginning of the year was that my voice started breaking up and becoming hoarse. A friendly reminder that ALS eventually takes away one’s ability to make sounds at all. But like I said, for the moment at least my voice has recovered. And that’s the positive end of this post.

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1 Comment

  1. I’m sorry to hear about your neck and back Anja. It must be extremely painful and exhausting. Keep hanging in there. xx


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