Dear Diary,
Why can't I think of anything positive to report? You could almost get the impression that I'm not doing so well at the moment. No need to worry, I'm not about to jump off the next bridge. The effort to get there in the first place seems much too high. By the time you read this, I'm sure I'll be feeling better. Because it will take a few more days before this post is automatically published. As you know, I publish everything with a time lag of one to two weeks. I don't want outsiders to be able to draw conclusions about individuals from my blog.
But in fact, lately I've probably been in a slump more often than not. The things that work, I kind of take for granted in my mind. Of course, I still manage to draw up complicated model contracts for clients and give them legal advice. I earn good money. Very good money. Someone first has to copy me on that. And that's independent of my ALS disease, I mean. But I also manage my life myself in general, despite my 90% severe disability and the highest care level.
I could bore us both longer with all that I have achieved. But what does that change about my existence in the here and now? Nothing that really makes up life.
Shit, woman/man. Now I'm getting depri-philosophical in my old age or what? And anyway, what does that have to do with the headline? Nothing. Or maybe it does?
I can explain the chain of thought to you.
Just when I am busy finding a pharmacy that is willing and able to supply me with sip food, we run into the next problem with our orders.
Today, my nurse casually tells me that my weed is practically empty. But when I was told last week that I only had enough capsules for three to four weeks, I immediately requested a new prescription. And only yesterday I explained to my nurse that it had been ordered and that my pharmacy would probably deliver in the evening. At least that's what I was told. Well, yesterday evening a delivery from the pharmacy arrived. Unfortunately, there was no cannabis in it and my nurse probably didn't realise that I was expecting it. It's a mystery to me why I remember the conversation, but my carers think I forget things all the time. So why not add something for a change?
When I asked, I was told that there are delivery problems. I can expect delivery at the end of next week at the earliest.
That fits in perfectly with quite a few things that are not going as I would like at the moment. My ears are regularly closed because they lack the movement of the body. Not being able to hear well has a nasty effect on me. To me, who listens to music 24 hours a day. Even while I am writing, watching a report or sleeping. There are drops you can use to clean your ears, which works quite well if you do it regularly. Unfortunately, the drops are not available. There are delivery problems with them too.
My ENT doctor should probably come by. Otherwise it won't work. I'm practically deaf again in my right ear. Just like it was last summer. We needed several appointments for ear cleaning and it was very, very painful at times. We even had to stop one of the attempts because I was actually bleeding from the ear. You can imagine the anticipation is great. But what am I worrying about? Since I asked for an appointment hm... a fortnight ago or so, not much has really happened.
Inhalation solution. Another medicine that has been out of stock for months. The only option that comes close to my prescribed medication is the homemade version made from three individual ampoules. Unfortunately, it's not quite ideal in terms of pure inhalation. The ingredients are not identical, and the self-mixed preparation condenses much more directly in the breathing mask. This is not only unpleasant, it also makes breathing extremely difficult. Which is somehow the exact opposite of what I actually want to achieve with inhalation. Without subsequent coughing and multiple intensive oral and nasal suctioning, inhalation often backfires.
Now, one could argue that tipping three ampoules together can hardly be too much to ask. And I should cough after the inhalation anyway. As well as the suction. That's exactly the point, isn't it? Yes, but... first of all, not everyone can read properly. How often I have had to ask whether this is surely the correct mixture because the correct box looks different... How often I have been asked in the past three months how to mix this right now... I have already written the instructions in our group and by now they are even permanently visible on the 1.5 metre high stand display that stands next to my bed. Three guesses how much of a difference that made. Exactly.
As for suctioning, I have given up trying to explain that to my carers. Don't ask me what's so difficult about suctioning through the nose. Some carers successfully refuse to even try. I can beg and plead all I want.
And so it goes on and on in my life at the moment. I have set up a savings subscription for my shower gel with a well-known online mail-order company. That way I don't have to worry about it any more. But I guess I didn't take into account that nowadays even a stupid shower gel can have delivery problems. And at some point my last bottle of that was used up too. What do my carers do? Let me know in time? Ha ha. What do you dream about at night? You could also take a big bottle of bubble bath and soap the patient with it. At least if they wiped me off with clean water afterwards. But no, at least all the permanent male nurses from the Yugoslavian region are too lazy to do that. I can even tell them that I find the slimy, sticky feeling on my skin disgusting. The only reaction is a look of disbelief and the somewhat perplexed question of whether he should stop taking a cream bath here and now. Let it be. I'm glad to be washed regularly these days. And then I'll just order something else that's available. Then maybe something like this won't happen again. One small worry less. Small, but still.
The really stupid thing about my situation is that at some point I can only focus on things like this. Not a day goes by that something doesn't go wrong that is beyond my control but nevertheless directly affects me.
And that wears you out. It wears on the nerves.
I literally haven't seen my girlfriend for months. We are separated by about 940 km. No time. Flights too expensive. Our own private stress, which in turn quickly becomes our own relationship stress. Because I find it hard to take many of my girlfriend's problems seriously. I am fully aware that these problems are quite stressful for her. But in my eyes and in my world, well... difficult. Maybe I'm just too jaded. I don't know. And somehow feigning understanding and compassion, no, I've had that often enough in my life. I'll be 44 this year, despite all my doctors' predictions to the contrary. I've never been the type to build a relationship on lies rather than openness and over-the-top honesty. If that blows up in my face now, so be it.
I guess this is the first post of mine that has a real diary character. Confused, private and unvarnished. Who knows how it will be received by my readers. Maybe no one will read it anyway, or maybe they'll stop reading right after the first few sentences because it doesn't really interest anyone. I'll leave it like this anyway, because somehow it's part of my life to write about it when I'm overwhelmed with myself because everything is annoying me and I can't do anything right. Wink smiley.