Inside: learning, growing and it’s kind of amazing

This blog post was inspired by a friend of a friend, someone I had met a few times, who recently found out (on Facebook) that I have ALS and wrote a really nice comment saying some lovely things about me, ending with “I’m sorry she is suffering now”. I appreciated her kind words but I flinched a little at the word “suffering”. I’m not suffering. Struggling, absolutely. But not suffering. I understand how one might get this impression, of course. ALS is a tough disease to have (putting it mildly…). And… whenever I’m about to say something positive or hopeful, I often feel like I should start by saying: “I am not stupid. I know what I have. And I know what the prognosis is.”  Because I do. But… this really is an amazing journey. And of course, if someone could guarantee that in the end I will get the miracle I need, that would be great. But then it wouldn’t be the same journey, would it? Anyway, this is my path and I’m learning a lot about myself and I have a lot to be grateful for and that’s what I want to write about.

Starting with the obvious: writing.
I had never really written anything except school papers. And a traveling journal 13 years ago (come to think of it… I wonder where that ended up…). And now, this blog. I’m really enjoying it! I know it hasn’t appeared that way the last two months… but I am. I love this process of putting my thoughts in order and sharing them with others. And I like what I write / what I’ve written… if I do say so myself. Several of you have told me that you enjoy my writing as well and that means a lot to me. Actually, the fact that people are reading my blog at all means so much to me (I check the stats quite frequently…). So, thank you for reading! And I’m grateful to have discovered this for myself.
(By the way, I jinxed myself so badly by writing this! The rest of this blog post was a huge struggle…)

Amazing people and deeper connections:
I have met some truly amazing people on this journey!
I’m thinking specifically about the practitioners who have worked with me or are working with me, who refuse to be discouraged by this disease and are doing everything they can to help me.
And I’m thinking about my stay at Hippocrates Health Institute, an alternative healing center. I met some amazing people there, who are battling their own demons and diseases and apparently refuse to be discouraged by anything. I’m so grateful for those friendships – you inspire me!
And I’m thinking about my wonderful old friends, who were there all along but many of whom I feel so much closer to now. I think this is because I’m more open, not trying to impress anyone but rather admitting that I need help (lots of it): hugs and shoulders to cry on and people to talk to about all this. And there you are. You were always there and I feel a little bad for not realizing that until now. But mostly I feel grateful.
And I’m thinking about friends near and far who are following my story on Facebook and WordPress and are sending messages often at the exact moment when I need some encouragement. Thank you!

Healthy eating:
This has been quite a journey in itself. I used to not think very much about my food at all. I ate mostly vegetarian, which I assumed was automatically healthy (it’s not). I ate so much processed food and sugar. And I didn’t really enjoy eating: I never thought much about what I felt like eating, I just ate when it was time and whatever was available. Since getting sick (actually, starting a year and a half after getting sick) I’ve been exploring different diets and ways to eat healthy.
I’ve mentioned Hippocrates Health Institute, where I was introduced to a raw vegan diet. Some things I took away from that experience are to be aware and suspicious of processed foods and how to make my own nut milk. I felt wonderfully clean inside but… I weighed only 48kg/105lb. And I realized that I like to eat warm, cooked food.
After that I tried metabolic balance. Technically this is a weight loss program but I was told it could be used to gain weight as well… turns out that’s not the case (at least not for me). But I discovered Greek yogurt made from sheep’s milk, chick peas, mashed avocado with sunflower and pumpkin seeds and the fact that I don’t like to eat so much bread.
Then I arrived, for the moment at least, at an Ayurvedic diet. I eat mostly vegetarian but I get the occasional craving for meat – and then I have some. For breakfast, I usually have cooked quinoa with coconut oil and Greek yogurt with fruit, which is not exactly Ayurvedic but feels right for me. And that’s exactly the point: I feel like I can finally tell what’s right for me. And I think about what I feel like eating.

Internal and external awareness:
Like I say in the subtitle of this blog: “When it’s not shit, it’s quite interesting”. I find it absolutely fascinating what’s happening with my body. You know, when I can get past the frustration…
As a Pilates trainer I’m familiar with and a big fan of the musculoskeletal system. I’m wondering now if I like this system so much because I can work with and change my muscles, so it feels like I’m in control. Well. That’s an illusion. The nervous system is in control and without a healthy and cooperative nervous system it becomes impossible to move so much as a finger. Literally. Which feels weird, not like weakness, it feels disconnected. Like, you can flip a broken light switch as much as you want, the light is not going to come on. This loss of control is… well, unpleasant. And humbling. It also fills me with gratitude for the many, many years that my nervous system was just quietly working perfectly and for the many, many nerve connections that are still quietly working perfectly, giving my body amazing potential for compensation.
Also, I’ve never been so aware of the mind body connection. What I think about and how I feel has a huge impact on my symptoms: Speaking is becoming difficult and almost physically impossible when I try to talk about something that upsets me. And the spasticity in my legs is much worse when I think or talk about something upsetting. Which I often do during osteopathy or physical therapy treatments, making the therapist’s job so much more difficult… until I say “Hang on. I’m going to think about my guinea pigs. Okay, continue.”  Works like a charm to reduce spasticity every single time.
External awareness is about my altered perception of the world around me. Basically, it’s one big obstacle course. Have you ever noticed that the handrails of most stairs are too short? And what’s with the inconvenient placement of toilet paper in some toilets? And don’t get me started on thresholds and doormats… One challenge after the other. But then there’s this sense of achievement when I’ve figured out how to deal with an obstacle. And the kindness of strangers who sometimes seem to patiently wait for hours in order to hold the door for me. And one guy actually offered to carry me down some stairs! So, obstacles… opportunities…? (The stairs guy was pretty cute…)

Self love and acceptance:
I don’t think I’ve ever liked myself more than I do right now. I’m just going to say it: I think I’m great and the way I’m handling this situation is amazing. There. Said it. Okay… now I’m worried about what you think of me, now that you realize I’m so full of myself. But… Well, I am. And I think we all should be – full of ourselves. Well, love ourselves. I never thought much about the concept of self love, unconditional self love. And when I started thinking about it, I realized that my self love was absolutely conditional and very much related to practical abilities and achievements, such as  traveling the world, living in different countries, being a good Pilates trainer and having my own studio. And that’s not really the way it should be, is it? But the sicker I get and the more abilities I lose to this disease, the more I love myself. And of course “handling this situation” is kind of an ability too but that’s different, isn’t it? It’s not about how I “do” things but rather about how I “am” in this situation. Mostly calm and positive and committed to healing. And when I’m not, that’s where self acceptance comes in. Of course I have days when I cry a lot, don’t feel like doing anything other than watching TV or just can’t handle doing my exercises. And that’s okay. I can accept that and I don’t love myself any less on days like that. Okay, well, most of the time. Right now, I think this is the most important lesson of this journey. And I’ve probably just scratched the surface and there is a lot more… to learn and to love.

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.