A few things

OK, so just this once I am going to go there and talk about a few things I really miss being able to do. In no particular order.

Spontaneously shaking my booty and doing a quirky little dance when a good song comes on (on the radio, in my head…)

Going to the bathroom. By myself. Closing the door behind me. (Ideally the thought of being in the bathroom by myself with the door closed would not cause a panic attack like it does now.)

Brushing my teeth. Nobody does it right. Well, my dentist is quite happy with the cleanliness of my teeth, so I guess they do ok… But I hate having other people brush my teeth. Try it, it is horrible.

Saying something really quickly. This is kind of a double-edged sword. Ever since speaking has become so difficult, that I have to think about and plan what I want to say, I have not regretted much I have said. But I have regretted, numerous times, not being able to say something quickly, like when I am the only one who sees the greasy drop that is about to drip on… nevermind, or when something hurts or itches, or when the nurse talks back (which would not be so bad if I could talk back and we could just go back and forth a little and I could have the last word at least sometimes…)

Lying on my stomach.

Scratching my itches.

Laughing or crying really hard without triggering spasticity and trouble breathing (I know I said in no particular order but this last one is probably the big one).

A few days in hell

On Thursday, October 20th in the evening I suddenly felt nauseous and had to throw up. Except that nothing came out except a little bile… Sorry for the visual and I am afraid I want to say a little more about vomiting in my “little situation”: So I am sitting chair with a bowl in my lap, leaning over the bowl to throw up. BUT the effort of throwing up triggers my spasticity, so my feet come up in front of me, my butt comes up out of the chair and my head and shoulders go back. Not a good position for throwing up, rather a perfect position for choking. My parents and the night nurse (a 1,95m / 6’6” hunk) had to hold me down. Which was very hard for them and uncomfortable, painful and scary for me. And something super-scary happened: after throwing up, I wanted to rinse my mouth of course and… I could not. These days I always use a straw to drink and I had the straw in my mouth and… I did not know how to suck (feel free to make jokes about this). I simply could not get a lot of water in my mouth. Which was really gross in that moment but the main thing I worried about was this: ALS+bullshit like this often gives me a glimpse of the future with ALS (e.g. I had trouble talking ages ago when I had a cold and it was a lot like the trouble talking I have all the time now), so I was scared of this happening all the time in the not-distant-enough future. I talked to my speech therapist about this and he told me not to worry. Since it only happened in those post-throwing-up moments, he said it was likely related to that and not to ALS. Phew. And thank you, that was the right answer.

My nausea and throwing up every couple of hours continued until about 2pm the next day. The nurse who was here that day was kind of new, very nice and… smells like an ashtray. That is a rather annoying thing anyway: I am a lifelong non-smoker and most nurses (at least in Berlin) smoke. And some are totally inconsiderate and unapologetic about it. I have had nurses tell me: “I need a cigarette break right now or I will become aggressive.” or “I smoke, there is nothing I can do about it.” Those two do not work for me anymore but I hate those situations: there is such a shortage of nurses in Berlin and we desperately need help, so it is difficult to criticize. And especially when it comes to smoking, I feel like people often get so defensive, like I am trying to criticize their character or something. I honestly am not, I know some wonderful smokers and I do not love them any less for smoking. But can I just say… I am a non-smoker and recently surrounded by smokers in very close proximity, actually in my personal space, and that SUCKS. And please be considerate. This used to be much more of a problem, I am really lucky now: I have quite a few non-smokers and the nurses who do smoke are considerate. Including “nurse ashtray”, short of quitting smoking she does her very best to be considerate. And I can usually handle it o.k. but when I felt so sick and rotten anyway, I just could not. Which meant a lot more work for my dad. My hero. He was amazing, as always.

But… what was going on? Why was I feeling like this? By Friday afternoon I had a splitting headache and was very sensitive to light. My doctor came to check on me and diagnosed… a migraine. What the…?! As far as I remember, I had my last migraine when I was 15. Why now? Actually, I think I know why it happened, I had been really upset about a misunderstanding / miscommunication and I think that did it. Well, shit. But I know to be aware of that now. Because I really do not need migraines on top of ALS. Especially since migraines can come with a form of depression, which I really felt the following night. We did not have a night nurse, so I did not want to bother my parents too much. And I did not feel like talking anyway. For the first time in 5 years with ALS I thought: What is the point? Why am I fighting like this? Do I really think there can be a happy end for me? Why not just let go and die? Everything seemed absolutely hopeless. It was like a deep dark hole. I started thinking about things I want to say or do before dying. You know, “putting my affairs in order”. It is probably smart to think about that in my situation and I frequently do. But not at night and not in that hopeless frame of mind. It was really painful. My doctor told me that a migraine usually lasts 3 days and that is pretty much how long this depression lasted. I apologize if I wrongly label my experience “depression” but I do not know what else to call it. And my therapist said it sounded like a depression. So. People often tell me how brave they think I am and how well I am dealing with my situation. What can I say… that is me and that is easy. Because I do not suffer from depression. I know several people who do, you know who you are, and I love you and you are HEROES and HEROINES!

Before my migraine was over Sunday night, something weird happened on Sunday evening: Technically I am entitled to 24-hour-care with registered nurses but at this point I only use 20 hours in two 10-hour shifts, 10am to 8pm and 10pm to 8am. I usually look forward to those two hours alone with my parents but not Sunday evening. I almost had a panic attack, I was so scared all of a sudden to be alone with my parents, without professional help just in case. What if something happened? I should point out that I was not necessarily scared for myself but worried for my parents. How would they feel if something happened to me and they did not know what to do? So we asked “nurse ashtray” (I need to find a different nickname for her because she is really nice…) if she could stay a little longer and she could. She stayed an extra hour and we talked a bit. I told her I was grateful because I am so well cared for and she agreed saying I was the best cared for patient she had ever seen. We talked a little about why this is: My parents obviously have a big role in it and apart from the fact that they are amazing, it is also very lucky that they are healthy and fit and… retired. I remembered my hospital stay almost five years ago, when I was diagnosed. One of my roommates was an elderly lady who had Parkinson’s disease and could not sleep at night due to pain. She woke all of us up several times. Her daughter had brought her to the hospital because she did not know what else to do. She loved her mom and wanted the best for her but she had a full-time job and simply could not handle the sleepless nights anymore. My parents and I did not get a good night’s sleep for… a year and a half. Which was hell but simply would not have been possible, had we not been able to nap during the day. So, I am really lucky. Sounds weird but I mean it! The other thing is my above average health insurance, which pays for excellent care. And I am so lucky with my practitioners and therapists:
My doctor is always available (ALWAYS, evenings, weekends, holidays…).
My osteopath somehow still manages to balance my increasingly out-of-balance body.
My psychotherapist has not abandoned me (like psychotherapists often do when this kind of disease is diagnosed, and the ALS clinic told me they find it impossible to find therapists for ALS patients).
I have 2 physical therapists who come twice a week each and they are amazing.
My speech therapist comes up with the best tricks that one cannot find in textbooks.
And I finally have a pretty good team of nurses (although… that really is the tricky part… as long as we are all human, there will always be problems and then it is back to point one: my parents who step in and protect me).
So, a lot to be grateful for and some good thoughts for calming down and let the nurse finish for today.

The next day the migraine was over. I felt it right away: the fear and depression were gone. Just like that. Although otherwise I still felt pretty shitty, weak, and I even had to throw up again, just once and somehow that was ok. So technically that is the end of this story but something happened the next morning that I want to include: One of the nurses (no nickname) almost made a mistake handling my port that could have killed me. Or at least hurt me very badly. I caught it in time and told her, and she probably would have caught it, too, but since I noticed it first, I cannot be sure and that does not feel so good. But… I have been thinking… maybe I should not make such big deal out of it. Life is dangerous and theoretically anyone crossing the street is in mortal danger. Maybe my port is just evening out the playing field, since I do not cross a lot of streets these days… So my mortal danger has to be elsewhere. Anyway, it made me aware of how fragile life is. And in case things happen fast and I do not get to say goodbye properly, let me say this now:
Thank you for being in my life. Thank you for taking the time to read this and/or react and/or comment, thereby being with me on this journey. It would be so much harder without you.

So. In a way this is the end of this particular chapter. But why did it take so long for me to write about this? Well, for one thing I have ALS and everything takes longer. The other thing is the fact that this migraine was the beginning of an unbelievable streak of bad luck: It took almost two weeks for me to recover from this migraine, especially to recover from the nausea and be able to eat normally again. And pretty much the next day, a Saturday in the evening I started feeling a little weird… And an hour later I had a fever of over 39°C (102°F), nausea, vomiting, shivering and out-of-control spasticity. It was horrible. My doctor came (yes, on a Saturday evening) and gave me a spasticity-reducing injection, an anti-nausea IV and told me I had to take antibiotics… great. Unfortunately we did not have IV antibiotics at home (we do now, just in case) and the best the pharmacy could do on a Saturday night was an extremely sweet, synthetic orange flavored kids syrup. Oh well, after the anti-nausea IV my stomach felt strong enough to handle it. After about a week of being sick and taking antibiotics, which of course upset my intestines all over again, I started feeling better. And then I got a urinary tract infection. Another dose of antibiotics (at this point I did not really care anymore) and I soon felt better. Until the back spasms started. The next day. It was weird and very painful: in certain positions and with certain movements, I would suddenly get a shooting pain in my left lower back and literally collapse to the side. Someone had to be on my left side to catch me if this happened. I do not remember how long this particular disaster lasted but I think it was a few days and then it got better, then worse again, then better, then… In short, I was a mess. And I pretty much stopped walking then, because I was unable to place my pelvis and straighten my spine. I have been getting daily injections of heparin ever since to prevent thrombosis. Sigh. In December, things got a little better but I kept having “episodes” (that is what I called it): in the evening I would suddenly get a fever, often with nausea and spasticity, and after about 4 hours it was over, my temperature dropped back to normal and by the next day I would feel a little weak but otherwise ok. This happened about 5 times, no more than twice a week. Weird.
This year, finally, I am pretty ok again. Nausea continues to be a problem on and off. I usually have zero appetite and eat only because I have to. My weight is about 50kg (110 lbs.)… I would like to gain a little more but at the moment… well, as long as it is at least 50 kg, that has to be enough for now. And yesterday I finally started to walk again.