Outside: shit is getting real

Week 62 of this blog
Week 155 of this situation
Weight: 54 kg / 119 lbs. (Yay! And I am pretty much done with the conscious, disciplined gaining of weight. This weight feels good.)
Last fall: 107 days ago (Oh yeah! And… fingers crossed, knocking on wood and all that!)

This is one part of a two-part-feature Outside/Inside. And it’s probably the more depressing part, so promise to read the other part “Inside” as well, okay?

So. On the outside the disease has become more manifest. And that’s been hard. I had a particularly difficult weekend a few weeks ago… Actually it was 107 days ago, the last time I fell. Here’s what happened:
My parents have been helping me and taking care of me. And that Saturday they were about to leave around 6pm when I fell in the bathroom and landed halfway in the shower tub. I could tell right away that I hadn’t hurt myself too badly but there was no way I could’ve gotten up or even out of the shower tub had I been by myself. Which would’ve been the case about five minutes later. Thankfully my parents were still here and were able to help me get up, which was really difficult even with their help. I got an emergency call system installed a few days later and I’m always wearing my emergency call button on my wrist whenever I’m alone now. And I’m so grateful that I saw the necessity for this emergency call system without actually getting into an emergency while alone.
So, I felt okay after this fall and sent my parents home. I was a bit shaken though and had a weird evening and a hard time falling asleep. Basically, I couldn’t fall asleep at all. And around midnight I had to go to the bathroom. I have to back up a bit: I’ve been sleeping in my panties for a few months because it’s been so difficult to turn over in bed and if I wear pajamas or a t-shirt, then that gets stuck and wraps around me and it just doesn’t work. So, panties only. Which is fine while I’m in bed under the covers but like I said, I had to go to the bathroom. And I can’t just throw something on before going (at this point the paralysis of my arms and hands is so bad that I can’t put anything over my shoulders/on my upper body). So… that trip to the bathroom that night was the worst thing I’ve experienced so far with this disease: I was cold and my spasticity was really bad, so I could hardly walk and I was so scared of falling and the whole trip to the bathroom and back took at least a half an hour. But I managed. Back in bed I still couldn’t sleep and at about 1:30am I had to pee again! I really don’t know what was going on and where all that urine was coming from but that time I was too scared to go again. Just couldn’t do it. So I called my parents. 1:30 in the morning. I know I can call them anytime because my parents are wonderful but I don’t do that lightly at that sort of time. Still, my parents came and took me to the bathroom and then slept over. And a few days later I got a commode (sorry, couldn’t resist the opportunity to use that word in a sentence). It’s a chair with toilet, a “toilet chair”, basically a potty for grown-ups beside my bed. Sexy, huh? I hate that I need it but I do need it and it’s so convenient!
And on Sunday morning I had my first visit from the mobile nursing service. I had decided this about a week earlier. My parents have been helping me and taking care of me and… They’re wonderful beyond words and we have a great relationship and I’m so grateful but at this point they were with me from 9 to 5 every day, including weekends. And that was just too much, for me and them and us as a family. So I decided it was time to get some outside help. (By the way, nursing care insurance is included with my medical insurance, so this stuff is paid for. Yay and thank you to the German insurance system.) I started by having the mobile nursing service come twice a week on Thursdays and Sundays, in the morning and at lunch time. Shortly after, I added five evenings because my one-hour-going-to-bed-ritual wasn’t really working for me anymore and more often than not delayed my bedtime.
So anyway, that traumatic weekend showed me the need for an emergency call system and a toilet chair and saw the first visit from the mobile nursing service. All things that help me but also remind me that I’m sick. It took me a few weeks to get used to all these changes and be okay with everything.

Unfortunately shit doesn’t stop getting real there. I have also realized that it’s time to get a wheeled walker. My cane just doesn’t support me enough anymore. And at this point my fear of falling is greater than my vanity… I just realized I never posted a picture of me and my cane, so I better not make any promises about pictures with the walker…
And with my ever increasing spasticity, sleep or rather lack of sleep continues to be a problem. I’ve started taking Sativex, a THC-based anti-spasticity medication. After a rough time with side effects and trying to find the right those, I’m now doing okay with that. I notice a difference in my movements during the day but it does nothing for my sleep. I’m now working with a new doctor, trying to find the right pain medication to help me sleep. I also got a soft mattress topper (is that a word?), which helps a little bit. I can stay in one position more comfortably for longer before I have to move but I do have to move eventually and turning over on a softer surface is even more difficult.
And I was advised to start speech therapy and breath therapy as soon as possible. So I will. I’ll let you know about my crazy schedule just as soon as I figure it all out.

So yeah. That’s the outside. Frustrating and a struggle and increasingly sick looking. But that’s just part of the story. So please read the other part about the inside as well.

Leave a comment


  1. naomi

     /  December 1, 2014

    Yay German Health care system. And yay you 🙂

  2. Anastasia Platt

     /  December 3, 2014

    This may seem a little self centered of me, but how can you empathize without relating things to your own perspective …anyway this really reminded me of being pregnant this last time. My first two were really easy, and relative to other peoples this one was too, but this third time I had lots of spine and sacrum pain which made it really hard to move around in bed, and of course there is the constant night peeing…there were times I considered wetting the bed. So all this sucks a lot but you are handling it all so well. Love you doll.

    • Dear Anastasia!
      This is difficult. I love you and your friendship and support means a lot to me. But in this case I disagree. I don’t think it works to compare diseases or shitty situations. That usually doesn’t do justice to either disease / shitty situation.
      The first thing I thought after reading your comment was “I want a baby”. Which, at this point, is beyond difficult, so that made me really sad.
      The second thing I thought, was “a pregnancy lasts only nine months and in the end you have a beautiful baby”. It’s a completely different situation.
      But I don’t want to belittle your experience. It sounds very painful and nine months can be a long time and I’m sorry you had to go through that. And I love you.


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