Still here and breathing but…

Hey everybody,

I‘m still here… haven‘t felt like writing in a long time… But I miss it. And I miss you. And I want to let you know what‘s going on. Well, what has been going on since June. It‘s pretty hardcore and sad, so… I don‘t know, be careful… if you have a pet, maybe have it near you while reading…

This was originally a mail I wrote in German to my doctor and osteopaths. Then the wonderful Katie Griggs translated it for me because I just couldn‘t go through the whole writing process again (But then I tweaked it a little to sound more like me…).

So there.

Dear All,

time‘s up: I have to make a decision about ventilation.

I‘m terrified.
I don’t want any of this.

But here goes: on June 10th I went to CABS (Charite hospital outpatient clinic for mobile ventilation and Oxygen… something) and I want to tell you about it. Plus it helps me organize my thoughts if I tell you.

The last time I visited CABS was 2 years previously when everything was pretty good. So they told me I didn’t need to go there regularly, just come if there is a problem. I developed a “problem”, that‘s why I made the appointment. My problem: About a week before the appointment I started keeping my eye-thingy on overnight, because my voice had become so weak, that the nurse didn‘t hear my calling right away. The weak voice is a sign of problems with air and breathing. Plus, I just had a feeling.

The problem with ALS is not inhalation, but exhalation. That’s why my oxygen saturation is always good, but I have too much CO2 in my blood because I can’t exhale enough. The CO2 value should be 33-43 (I don’t know the unit), mine is 49. CO2 is an anaesthetic gas, which makes you tired. I can confirm this, I am always tired, I only have to close my eyes for a few minutes and fall asleep. If I let this go on now without treatment, the tiredness will get worse and worse, I will sleep more and more and eventually fall into a coma and never wake up, which is the natural death of an ALS patient. Dr. Kim, who was very good by the way, could not tell me how long this would take, because I was not there for the past 2 years and so my course on this is completely unclear.

So it’s not good that I haven’t had my lungs checked for so long. It would’ve been better to have some regularity. Unfortunately that wasn’t clearly communicated and nobody paid attention. I often feel abandoned with my illness.

Fortunately, I can obviously rely on my gut feeling, which tells me when something really needs to be done. Like now: if I want to act, it has to happen quickly, depending on my decision. That’s why Dr. Kim had to give me some difficult information in a compact way. I have three options: do nothing (see above), non-invasive ventilation (mask) or invasive ventilation (tracheotomy).

For mask ventilation, I would have to be hospitalized for at least one week to try out and adjust the settings. This has to be done by a lung specialist. However, there is always the possibility that mask ventilation does not work for ALS patients. Pressure is exerted and sometimes the airways simply collapse. You have to try it, it‘s not possible to predict it from the condition of the patient. But you notice immediately whether it works or not. And it stays that way, the airways do not collapse sometime later if the condition worsens.

At this appointment on June 10, I tried something else that allows conclusions to be drawn about the possibility of mask ventilation: a Cough Assistant. Because lately I have to clear my throat all the time and I have a frog in my throat which I just can’t get rid of. I found the Cough Assistant quite horrible and could not stand the mask on my face very well, but it worked. So Dr. Kim made two cautious predictions: 1. mask ventilation could work for me, but 2. it would likely take more than a week. Great.

Once you have the mask, you’d probably only use it overnight. But over time, you would need it more and more until you were wearing it 24 hours a day. And: if I decide to use mask ventilation, it has to happen now. Like, in the next few weeks, not months. Like, I should take the next possible appointment. Dr. Kim repeated the that several times.

A tracheotomy was only explained briefly because I didn’t really want to hear it. But what I didn’t know yet, was that even with a tracheotomy, you can still breathe on your own and would use the ventilation initially only overnight and then increase it as needed until you are ventilated 24 hours a day at some point. But then all the breathing problems associated with ALS are over and you can live on for a long time. Conversely however, the ability to communicate will then decrease. So, you can move your eyes less and less, so that you can express yourself less and less by eye control. So you have to specify in a living will how long you want to be ventilated.

So these are my options.

I‘m scared.
I don’t want any of this.

Dr. Kim said a few more good things (I think): “There is no right and wrong. There’s only right for you. That’s all that matters.” and “A long life isn’t everything. It’s all about quality of life.”

Years ago when I first heard what was going to happen to me, I spontaneously thought: If I can’t breathe, I can’t live. Those are the “rules” in my world.

At the time it all seemed so theoretical and far away. Now it’s here. And it’s real. It was a shock. (Stupid, right? Like I haven’t noticed what ALS has been doing to me for years.) But after a few days of shock I realized that the “rules” in my world still apply: If I can’t breathe, I can’t live. Don’t want to live.

Whether I eat myself, or the food runs into me through some hole, whatever. I don’t care about that at all. But breathing… I want to do that on my own, I can’t give that to a machine.

And mask respiration is an imposition. Just the thought of a mask makes me anxious. Like claustrophobia. It’s a very unpleasant feeling to have such a thing on your face. I can’t imagine that, constantly or for several hours at a time. Not to mention that a week as an inpatient at the hospital is a nightmare. I don’t feel like it.

And I once said: What‘s another hole? But that doesn‘t apply to a tracheotomy. I don’t want that kind of hole.

Another reason against the tracheotomy is that I already have problems with too much air in my stomach. It causes nausea and burping is torture, and that won‘t get any easier. And Dr. Kim has said that ventilation will bring more air into the stomach, and unfortunately the air cannot be prevented from getting into the wrong place. So I would feel nauseous all the time, but I wouldn’t be able to communicate that? No, thanks.

And anyway, if I don’t do anything now, become more and more tired, sleep more and more and then don’t wake up anymore, there‘s something organic and natural about it. It feels right. Now a tracheotomy and then somehow determining when I don’t want to live anymore feels weird.

And the nursing crisis is a huge problem that won’t get any smaller anytime soon. It’s sooo hard to find good, qualified nurses. The only reason why I am now so well cared for and still have a life worth living is because of my parents. And my biggest fear is that they might die before I do. Which, of course, would be right. So I feel really bad about that and I’m so worried about my parents. Who’s gonna take care of them when I’m gone? But the other way round, I can’t imagine life in an institution without my parents by my side either. It’s all shit. Dr. Kim’s right, a long life isn’t everything.

So this is it. I don’t want ventilation and I‘ll let things run their course. Well, actually, I don’t want any of it. And I’m scared. But that’s the way it is now, and that’s okay somehow.

If you have an opinion on this, I would like to hear it. Above all, have I forgotten anything?

Best wishes

Anja

PS: The option of a tracheotomy remains for me for a while. If I want another hole. But I don’t think that’s very likely.

Trauma. Anger. Sadness.

Like pulling teeth. Writing this blog post has been incredibly difficult and I’ve been at it for months. It’s about the process of getting my feeding tube and nausea and a realization I will get to at the end.

So now I have a feeding tube.
Finally.
I think I left it too long and made things unnecessarily hard for myself. I’ve been getting additional nutrition through my port for a little over two and a half years. That was totally ok and made sense for a while because I was still able to eat a fair amount (though not quite enough to support myself and definitely not enough to regain the weight I had already lost). But as the disease progressed eating became more difficult and time consuming and eventually I started getting nauseous. That was in January 2016 and yes, that means I’ve felt nauseous for almost 3 years. Which sucks. I now assume that the nausea was related to my stomach and intestinal system being… well, empty. Too empty too often and too long. Feeling nauseous didn’t exactly make me eat more, obviously. So, despite a few ups and many downs, the problem got pretty consistently worse. But I was adamant about not wanting a feeding tube (like I said in “A decision and a compromise.”) and to explain that, I have to (and kind of want to) talk about an old trauma. For lack of a better word. I usually don’t like being so dramatic but in this case… seems appropriate. Here’s the story: My Oma (that’s German for grandma) had a stroke when she was almost 91. She survived but never recovered and had to move to a nursing home, where she “lived” in a bed in a room with three other ladies, was given a feeding tube and… well, was kept alive. It was horrible and I’m sure she didn’t want that. But she didn’t have an advance health care directive written and signed, telling us and the doctors what to do in this case. And the stroke had taken away her ability to talk (along with her ability to move the right side of her body). She eventually got an infection and passed away almost one year after her stroke.

The second part of this trauma happened in spring of 2015 and I wrote about it in Dealing with potential lung issues: How NOT to do it. And… How. It’s. Done.”. A “breathing specialist” nurse from hell told me that I needed to be admitted to the hospital to get a breathing mask and while I was there I might as well get a feeding tube… oh, and a breathing mask may not work, so I should start thinking about a tracheotomy. That horrible appointment connected a feeding tube to a tracheotomy in my head to create my ultimate nightmare: being stuck in some corner of some nursing home unable to move or utter a sound and most importantly unable to die. Being kept alive with minimal care for maximal profit. So, when I wrote my advance health care directive, I specifically stated that I wanted neither a tracheotomy nor a feeding tube. And I stuck to that, got my port, and everything was fine. For a while. Except for the nausea which I thought was inevitable.

Then suddenly, at the beginning of this year, I started to worry about my heart: Pumping an extra two liters everyday suddenly seemed like a lot. My doctor and the Professor assured me I had nothing to worry about, my heart was (and is) perfectly healthy and strong. But… I don’t know, somehow eating through my veins didn’t feel right anymore. And I started wondering if my nausea was related to my stomach and intestinal tract being too empty. And then I realized: a feeding tube has nothing to do with a tracheotomy. Like nothing at all. They are two completely different procedures. D’uh. I felt like such an idiot. Deep breath (‘cause I can!), forgive myself, I was traumatized after all.

I’ve been thinking about this a lot, how was it possible that this stuff didn’t get talked about for so long? The answer is because I have ALS. This disease makes communication so difficult, while constantly throwing shit at me that needs to be talked about. So things that don’t seem immediately important get forgotten. Possibly the worst aspect of having ALS.

Anyway I still needed some time to wrap my head around the concept of a feeding tube. It’s a hole where there shouldn’t be one. It is. Can’t argue with that. It took a few weeks of thinking and talking it through to get to the conclusion… in my little situation… what’s another hole?

So, I picked an anthroposophical hospital, which was a great idea, they were absolutely amazing, and got my feeding tube. And… the nausea got worse than ever. My stomach was upset, to say the least. Pissed. The first week I felt like my stomach was constantly yelling at me: “Are you out of your mind?! A hole?! Here?! With food coming through?! What the…?!” Things eventually got a little better. A very little. The past 6 months since getting the feeding tube have been incredibly difficult, lots of experimentation with different types of food, ups and downs, and lots of nausea. And frustration. And a realization.

I don’t know how to explain the amount of suffering those almost 3 years of nausea have meant for me. I feel either nauseous or I’m scared of getting nauseous. I have zero appetite for anything. I can’t even imagine having an appetite for anything. After almost 3 years of nausea my relationship with food is so far from normal, that I don’t know how that can ever be reversed. Physically I would absolutely be able to swallow things like apple sauce, mashed potatoes or pureed soups, and that would be really good for me. But in reality the thought of tasting and swallowing anything makes me gag. I can just about drink water. I could drink tea or juice, I suppose… but I don’t feel like it.

My realization was this: All of that could have been prevented. If only a doctor or nurse had said to me: “Of course you’re nauseous, you’re not eating enough. Your stomach and intestinal tract are too empty to function properly. You need a feeding tube. Why don’t you want one? But that’s crazy, a feeding tube has nothing to do with a tracheotomy, you can have one and not the other. Please reconsider. Your nausea will only get worse as long as your stomach is so empty.” Or something like that. Nobody did. I have registered nurses taking care of me everyday, my doctor comes at least every other week and I have my appointments at the ALS clinic, nobody noticed the obvious. BUT after I got my feeding tube, everyone started saying: “Well now that you can eat more, the nausea should get better.” Really?! Now you’re telling me?! And… I wish. But it doesn’t work that way: my stomach and intestinal tract… I don’t know, have forgotten how to do it. Or are pissed and don’t want to cooperate anymore. Anyway, the past 6 months since getting the feeding tube have been an absolute nightmare as we continue to experiment with different kinds of food and at this point I can handle about 300ml of food… per day. And so far every “expert” has turned out to be just a salesperson trying to sell their particular brand. Right now I have “experts” from a company that isn’t affiliated with any brand of food but rather has access to all brands and should help me figure out what works best for me. They’re ok but… I’m not convinced yet and they haven’t really found a solution either. But after almost 3 years of nausea… I guess I have to be patient. Which is increasingly difficult because I’m so angry. And frustrated. And… I don’t know, kind of disappointed and sad. About 2 years ago an older nurse (“nurse ashtray”) said that I was the best cared for patient she had ever seen. And I really felt that at the time and it gave me a sense of security. I don’t have that anymore. I feel completely alone. It’s probably a good thing that I’m aware of this now because I obviously wasn’t very well cared for, I just thought I was. And I wonder, what else is there that I’m doing wrong or that could be so much easier but no one is telling me… And I’m exhausted.

But… the thing is… in a way this realization isn’t helpful at all. It doesn’t give me back the almost 3 years with nausea. And it doesn’t give me back the muscles I lost with the weight I lost. And it doesn’t make the process of getting my stomach back on track any easier. All it does, is make me angry. So, I have to let it go. I know that but I don’t know how to do it. Yet. I’m working on it.

So there.

You know how I like to end on a positive note? That’s really hard this time but I’ve got something: if you know someone who has a feeding tube, google “mic button” or “MIC-KEY feeding tube” or in Germany “Freka Button” and tell them about it. I got my “button” instead of a regular feeding tube and it’s so much more comfortable! It’s basically a feeding tube with a detachable tube, so I don’t have a tube dangling from my stomach all the time. A great invention, I highly recommend it. Anything to make the lives of those unfortunate enough to need a feeding tube a little easier.

PS: At the end of my last blog post about my daily routine, I hinted that my routine might change and I was going to write about it “hopefully soon”. I was talking about the feeding tube, of course. And, well, my daily routine is all over the place these days. So, I will write about it later. Probably much later.

A day in the life of… me

I’ve been meaning to do this forever: give you a glimpse of my everyday life with this disease. But then I wasn’t sure how much info was too much info. And then I never got around to it. And now I kind of regret that… because it would have been interesting to look back on how things were a year ago or two years ago… Oh well. I’m doing it now and we’ll see about how much info I want to share.
I should start by letting you know, I’m always tired. Partly because I don’t sleep so well. But mostly because I need a lot of Baclofen to control the spasticity in my legs. Baclofen is a muscle relaxant, and relaxed and tired kind of go together. But the spasticity was so painful and took so much energy, that I’m grateful for this medication, which works really well for me. But I’m always tired. Oh well. I take 2 tablets 4 times a day, roughly at 6 and 12.
So. That’s pretty much how my day starts: I wake up around 6am, get up, pee, take Baclofen and the nurse (or my dad, if we don’t have a nurse) sets up the nutrition IV. Depending on the size of the IV, it runs 9 or 11 hours. And yes, that means I have an IV attached to me all day. Everyday.
After that I go back to sleep and usually wake up some time between 10 and 11am. At this point, my main motivation for getting up… is the thought of my next nap. And maybe “nap” isn’t the right word… Ideally we’re talking 1.5 to 2 hours of deep sleep. But not yet. First I have to get up and pee. Without going into too much detail, I want to mention 2 things: Waste products from the nutrition IV are eliminated through the kidneys and bladder, so… I pee like a racehorse. And I can’t go to the bathroom, I have to use my toilet chair and… it takes forever. Well, not forever but when a healthy person goes to pee really quick, that takes, what, 3 minutes? For me, my butt has to be placed on the toilet chair, then my feet on the footrest, my hands on sticky pads and a little cushion between my knees. And then I can pee. And then to get me back into my comfy chair takes time as well, so my quickest possible trip “to the bathroom” takes 10 minutes. And I pee like a racehorse. ALS can be such a waste of time.
So, I’ve gotten up and peed, now I need some water, miscellaneous drops and a powder to support my digestive system, some Sativex (cannabis spray) and I’m finally ready for breakfast, about an hour after first getting up. And hopefully I don’t feel too nauseous to eat. But either way, I can’t eat much. Half a banana, mashed, is about it these days. Takes about 45 minutes. After that, it’s usually 12 o’clock or later: time for Baclofen. Then the nurse brushes my teeth and then… nap time! Ideally. Sometimes I have physical therapy at 12:30 or 1pm. In which case I have to wash, get dressed, do physical therapy and then… nap time!
I also want to mention that my capacity to hurry up for an appointment is very limited. Virtually non-existent. For example taking Baclofen: 2 tablets, cut in half, so 4 little pieces, usually takes about 5 minutes. I just can’t do it any faster, I need a break after each piece and that’s how it is. And if I choke or a tablet triggers my gag reflex or something like that… well, then it takes however long it takes. Nothing I can do about it and if that makes me late for an appointment, so be it. That said, I do my best to be on time for appointments by eating less or sleeping less. That’s all I can do. I have to get up earlier or be woken up from my nap (which really hurts) or I can’t eat as much.
Back to my example day. I’m gonna make it a Saturday, my favorite day, no appointments. So, after brushing my teeth… nap time! Ideally, I take my nap in my bed, lying on my right side. At night, I sleep in my recliner, which is more comfortable for sleeping all night, but lying in my bed, curled up on my side… wonderful! For 1.5 hours if I’m lucky. Then my right upper arm/shoulder starts hurting or my right hip/thigh. My internal alarm clock. I get up and wash and get dressed. Well, I get washed and dressed. No details, sorry. It takes about 30 minutes.
At this point, it’s some time between 3 and 4pm, time for lunch. Something mashed or pureed. Usually takes about an hour. After that, I finally have time for some fun: a visit from a friend or to play with my eye thingy (the eye tracking system that allows me to operate my computer with my eyes). And Baclofen, of course. And sometime around then my nutrition IV is done and I get some other IVs, vitamins, minerals, stuff like that, takes another 2 hours. And then I need a little nap to recover, half an hour or so.
And then it’s time to start thinking about dinner. Since I had my lunch so late, I usually can’t eat before 8 or 9pm, usually more like 9pm.
And then the evening routine: a trip to the bathroom to wash my hands, then brushing my teeth, my last dose of Baclofen (ideally around 11pm), getting changed into my pajamas and then it takes at least 30 minutes to place me in my recliner just so. So I can sleep until 6am. Ideally. But anytime after 5am is fair game for getting up, peeing, Baclofen, the nutrition IV…
So. That’s basically my day. During the week I always have appointments: physical therapy, speech therapy, osteopathy, psychotherapy. For which I have to eat less or sleep less. Or have less fun, I can’t have visitors during the week. But that’s ok, my appointments are worth it, I really enjoy them. And I clearly need them.
I’m glad I finally wrote this down because things are about to change… I’ll tell you next time. Hopefully soon.

Anniversary

Dear ALS,
it’s our 6-year anniversary today. Well, you came into my life some time in August or September of 2011 but 6 years ago today we made it official with my diagnosis. Happy anniversary! And here’s a thought as we enter our 7th year together: should you get a 7th year itch and decide to leave me, that would be o.k. And no hard feelings.
Sincerely,
Anja

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.

Happy birthday to me!

So… it was my birthday. And birthdays have been weird since my diagnosis. Actually, the whole Christmas-New year’s-birthday-package has been weird. The thing is, I was diagnosed December 23rd. 5 years ago. And ever since, this time has been all about how long it’s been. And how things have gotten worse. Not exactly a birthday sort of feeling. I’ve been wondering if that’s just because of the timing of my diagnosis or if that always happens with serious health situations. Anyway, that’s what it’s like for me. And this year, not surprisingly, quite a few things had gotten worse, especially walking and talking. And my neck. Actually all my back extensors have gotten weaker, so gravity is increasingly a problem. And I’m worried about my next birthday, wondering what it’s going to be like. And whether I will… you know, be alive for it. Well, only one way to find out. And I’m afraid it requires one year of patience. We’ll see.
But I have my family. And friends. And facebook friends. Who all made my birthday special. Well, really, they made it normal, and in these not-so-normal times that’s really special. Thank you!

And finally… a new one: Tell me what you want, what you really really want

This is one of those blog posts where I worry that you will all think I’m crazy. But then I remember: I have ALS… time to stop worrying about what people think. More importantly, you don’t deserve that kind of suspicion. Sorry. And here we go.

My chances of healing are… slim. I’m not talking about coping with this situation, but actual healing, things improving to a point of being able to live independently. I have no hope of conventional medicine achieving that. The way conventional medicine is handling neurological diseases in general is not encouraging. And even if someone had a genius idea today, it would take several years for a treatment to become widely available and I do not have that kind of time. So basically my best bet is a miracle. And I want that more than anything else, right? Of course! Well… oh… hang on… I am not so sure.

Here is the thing… actually, here are two things:
You know how on Facebook every now and again there are these jokes about growing up? Things like “Do not grow up, it is a trap.” or “That horrifying moment when you are looking for an adult and realize you are an adult…”. I totally relate, maybe a little too much… I did not like being a grown-up. In fact, I think I avoided it as long I could by traveling and living in Chicago and Japan. I was kind of grown-up, of course, I worked and paid my rent and bills and medical insurance and… that was it. No liability insurance, no disability insurance, no retirement plan… no worries! It was wonderful! And I am so grateful I had that time, and even more grateful nothing horrible happened. But then I moved back to Berlin and… started a business. And grew up. And how. Responsibilities, all kinds of insurance (thank God and Goddess!), taxes(!)… I hated it, really did. And notice how I talk about being grown up in the past tense? That is on purpose. I know, technically I am still grown up but it does not feel like that anymore. Which at times can be infuriating but most of the time… I kind of enjoy it. I cannot believe I am saying this but there you go. No taxes, back to insurance basics, no work but regular income from my disability insurance, I do not even have to pay rent… And just imagine, if I were to fully heal and recover… not only would this whole being-grown-up-business start all over again but it would be even harder: explaining it to my medical and disability insurance, finding an affordable apartment in Berlin, starting my retirement plan all over again at the age of over 40… What a nightmare! I know, considering the alternative, I cannot believe I am saying that either. But there you go again, that is what is going in this crazy head of mine and what is the point if I am not honest?

But the really big thing is this: Why me? Why should I get a miracle when so many others have not? And how would I live afterwards? How could I make sure I deserved this? Could I ever be a good enough person?

This is not about the possibility of a miracle. I have just been thinking about whether I truly want one. And whether I could handle one. And I am wondering if miracles can happen to people who are not even sure they want them.

And… what exactly is it that I want, that I really really want?

Can I get back to you?

September 17th 2016: Happy thoughts (reposted from facebook)

So… I have ALS and a lot of things suck a lot of the time. But not all the time!
Things that make me happy:
* Spending time with my parents. This can be a little difficult because we spend A LOT of time together these days… But they are awesome and so funny and I really enjoy that.
* My guinea pigs, Flauschi and Anton (the new guy). Sometimes I think they do it on purpose, like “I am just going to hang out here where Anja can see me and be extra-cute.”
* Sleep. I still sleep really well, like several hours in a row, and it is amazing. And I actually look forward to going to sleep now.
* Getting whatsapp messages from Jo. Thank you!
* Random good music on the radio. Highlight of today: the Faith No More version of Easy
* Reading about my friends” endeavours, baby bumps, kids… on facebook
* Walking. I walk with support from my dad and every now and again I manage to place my pelvis just so and actually stand on my legs with very little need for support and it feels wonderful.
* Visits from friends. I often worry about being too exhausted and no fun and it all being too emotional but… that is really silly, visits from friends make me happy, so… here I am begging for more visitors!

And on September 18th I added:
And… one more thing that makes me happy: 51kg! Finally. I had been stuck at 49.5 for weeks. Many many weeks. And today, all of a sudden, 51kg. I want to gain a little more but I am really happy for now because weighing less than 50kg is just absurd. Yay!

August 25th 2016: Some days it is just too much. Like today. (reposted from Facebook)

When I recently mentioned “feeling weak and nauseous”, that was a bit of an understatement… I have had almost daily diarrhea for a few weeks now, and since last week the occasional stomachache and nausea on top of it. Two stool samples came back normal and my bloodwork was excellent, from an internal medicine point of view I am perfectly healthy. Technically this is good news but… not very helpful at the moment. I am literally sick of this shit.
And since my amazing night with 7 (seven!) hours of sleep, I have had a bunch of shitty nights. I sleep mostly in my beloved comfy recliner and lately my heels have been getting sore. We put extra padding on the foot-rest and that worked for a while but not anymore. So now we have to experiment with all kinds of extra padding and supporting my body here and there to take weight off of the heels… and it depresses me. It further limits my ability to move and get comfortable. And… I just want to sleep!
And on days like this, the two things that make me sad, make me really sad: my poor shoulders which are skin and bones (Honor your rotator cuff and deltoid! And if you could do a few arm exercises or handstands for me, that would be great.) and my poor tongue.
It has been almost 5 years and I think I have been a good sport… Can I please not have ALS anymore?