This demand for happiness and gratitude is annoying

Being dissatisfied or unhappy is totally taboo. Negative thoughts and feelings in general. We have to deal with the most devastating disease, our lives, and often the lives of our family is out of joint, but whereas we let sadness show through! We are fighters and grateful for every fart. That the sun rises and because the birds chirp. We are up to our necks in water, our prognosis is enough to make us cry, but we are expected to be optimistic to the point of losing reality, to hope, to fight and to seize every opportunity, no matter how senseless, because we want to leave no stone unturned. We spend a lot of money, yes, our last shirt, on magic doctors and remedies, we swallow shovelfuls of food substitutes without knowing whether it helps or not. In our case, of course, it’s also hard to say if anything helps. We don’t know what it would be like without it. And everyone recommends something, neighbors, family members, friends. They mean well, they want to help.

But scolding and being angry is so satisfying. So for me. It is scientifically proven that pain and agony are easier to bear if you scold loudly. Expectant mothers in the delivery room are so loud for this reason. The pain is relieved by screaming and ranting. Even mental pain is more bearable with angry words.

But we are a sunshine in the long run, always showing the best version of ourselves. We would never admit that we are fed up. We don’t want to disappoint or upset our loved ones. After all, they sacrifice themselves quite a bit for us. We also don’t want to scare anyone. Because being in a bad mood would be a sign that we are in a bad mood, and of course that would be a reason to worry.

Of course we are in a bad mood! What if not such a disease would not be a reason for it!

However, everything around us urges us to be positive all the time. Media, advertising, products, coaches. Thought moves mountains! You can achieve anything if you believe in it and fight hard! Even from failure and despair you should draw something positive and learn. I have probably done something wrong if the success fails. Next time I will try harder. “Get out of the negative spiral – 5 tips for a healthy mindset and positive thoughts”. And of course, we are not spared the thought: is this illness possibly the result of negative thoughts?

Everything sprays from positive thoughts, shower gels, salad sauces, teas, washing powder are already called so. “Sunny flower meadow” fabric softener “Inner strength” smoothie or “Happiness” chocolates. A social environment that screams at us from all directions “Be happy, fit, beautiful and rich”. An alternative lifestyle does not exist at all. And we find it hard to find our place in this milieu. Our body is degrading, we can’t even shave our legs or dye our hair, our livelihood is constantly deteriorating, we now have to make do with a paltry pension instead of a salary. Our psyche is put to the test, instead of fancy two-seaters, we now drive a wheelchair and instead of sexy underwear incontinence pads or a catheter.

The social networks are full of this terror. Pictures of the dream vacation, of the gourmet food, the new-cry hairstyle, designer outfit, beaming people when learning new hobbies, the successfully passed exam, the new racing bike, surfboard or car. All these achievements, which are now denied to us, suggest to us how to live properly.

Many therapists and coaches want to teach us that our life has changed, and we must now look at the whole thing from a different angle. To discover new ways and possibilities. Thank you very much, I can turn and turn stomach ache around, it just hurts, no matter how and where I look at it.

Like this. I am tired of it. I am tired of it and it is too stupid for me to put on this eternally smiling mask. This demand for happiness and gratitude sucks. To hate something or to feel that something is unfair does not mean that I think negatively. It doesn’t matter if the glass is half-empty or half-full, for me half is missing. No matter from which angle one looks at it. And if I rant loudly and feel sad, it doesn’t mean I’ve stopped fighting. I just wasn’t born to be locked in my room in this weather, but to ride my bike around the lake. Watching others fills me with bitterness, sadness, even envy. And no, it’s not nice. Or noble or eloquent. But that’s the way it is. It doesn’t mean I don’t begrudge someone this or that. I begrudge everyone – but me too!

It is not easy to find the right mind for various people. My favorite are those for whom it does not have to do at all. My friends are like that. I have chosen them myself. Har-har. For everyone else, the familiar saying applies: “Before you diagnose yourself with depression, make sure you’re not surrounded by assholes.”.

Okay, that was more cynical than I thought it would be, you know what I mean though. So, I’m bowing out now with the corners of my mouth hanging down. And I don’t expect anything from my fellow man, no “it’ll be alright” (no it won’t), a “fuck, what a shitty day” is perfectly enough.

Do what is possible

For about two weeks now lives the sports group. That’s me, and a handful of participants from our online group. We do one hour of sports every day, each as much as possible and does one good. After seven weeks, we evaluate the data and see whether it has brought any results.

The initiator of the action was a mobility study, where they rejected all of usl there. Because we are all MSA-C, and the target group of the study are MSA-P-patients. Now we’re doing our own little study, and we’ll see if it’s any use.

What can I say after two weeks?

First of all, this group feeling is good. Sometimes it’s so hard to overcome your inner weakness. If I didn’t have this group feeling, I would hole up on the couch here and there and do nothing. But I don’t want to embarrass myself in front of my fellow members, so I get up and do my stint.

For me the first days were hell, it was rather worse than better. It was also scary to actually realize how bad I had gotten. When you don’t do so much, you don’t notice how fast you degrade.

So slowly now the whole thing is making itself felt. Less pain, one is more flexible, fatigue better. What remains is the bad balance. And you still have better and worse days. Sometimes you do the whole thing with a lot of verve and a lot of strength, sometimes you have the feeling that you are a balloon that is half empty.

The whole thing also makes me realize what has become of me, of my life. Four years ago I was living life to the fullest, running 12 kilometers in an hour, doing yoga, kite surfing, EMS… and now I can barely walk a few hundred meters on a rollator. Every little step, as well as from the couch to the fridge, or at night from the bed to the toilet – everything is at risk of falling, which can mean a fracture or strain, which can affect the course of my life. What I do now and call exercise wasn’t even worth paying attention to recently, and was laughed at by me.

Before the diagnosis – 2017 on the way to EMS
After the diagnosis – 2019 running up and down stairs – where it still worked without help

The other day I saw a program on TV about cancer. And celebrities who have successfully fought against it. Cancer is also a vicious disease, no question about it. What I would be happy if I had a chance to fight. The stupid thing about this disease is that the outcome is inevitable. And you have to digest that once. This finality is so hard to accept. I would like to fight so much. But for what? For two days of life extra that I may live undignified? Is that a meaning? Anyway, I do and do as much as I can, even if I don’t necessarily know for what. Maybe this way I stay mobile and self-sufficient longer.

It’s hard to motivate myself every day. I get up in the morning, and I think “Again?”. 

I would like to be more present. We and our disease is so invisible. That someone speaks for us. Because in the meantime I can’t even speak for myself because my language is so stupid. 

Anyway, as long as I’m still here, I’ll keep going. And if the disease takes away my ability to act independently, I’ll leave voluntarily.

Everything slows down

I took a look at how many posts we wrote a month in the beginning, and how many now… It’s getting less. Writing a post is becoming more and more time consuming, difficult and tedious. Meanwhile writing a post takes forever. I make many more mistakes when writing, which I then have to laboriously correct afterwards. I am much slower on the keyboard. Translating into English takes much slower. I have trouble concentrating, but at least I am not dull in the head. I am much slower in general. In all my movements. In my head I write articles, letters and messages faster. Often I lie in bed, in the morning or in the evening, and write in my head. Sitting down and doing it, however, is effortful. Slowly, I owe a bunch of people the answer. They probably think something, I have a hard time explaining why sitting down and typing on the keyboard is hard. Not too long ago, I couldn’t have imagined it myself. What is hard about sitting and typing?

I’ve already thought about, what if we can’t manage it all anymore? The blog, the Facebook group, the online meetings and the WhatzApp group. We would have to hand it over to someone more fitter before it’s too late.

Slowly everything becomes like in slow motion and it’s all hard. It’s as if my body is covered with blocks weighing tons everywhere. I compare how I was when we started writing this blog, it’s a huge downgrade. There I was walking in the woods every day with Nordic walking poles for an hour. Drove a car. And mowed lawns. While tedious back then. But making my bed is so tedious now. At that time I took the train from Munich to Konstanz to rehab and flew to Canada. I was crawling on all fours into the train, at that time and the flight to Canada was a huge challenge. That was two-three years ago. Now I think twice about going from the living room to the kitchen.

Walking and balance is enormously difficult. I benefit from the small apartment here. Here it is almost impossible to fall. But I go out less and less.

All in all, in a short time everything has become quite difficult. I am supposedly not even an aggressive course. I can hardly imagine that, I feel that my course is already rapid.

I can’t imagine how it will be in a few months, in a few years.

But I know what it means to stay active. Sometimes I don’t feel like doing anything for days, and I just lie around and stare stupidly. This quickly takes its revenge and I can hardly get up from the couch.

I sometimes torture myself – lucky that no one sees me – by vacuuming, doing laundry, or just putting trash out the door. And this writing keeps me fit in the head.

Life at a snail’s pace.

A man goes when he wants to go

Our paths crossed for a sad reason. And we spent too little time together.

You always had a kind word for all of us. For that I am now a little wordless.

Through you we learned how it is to go when one likes to go.

You broke the ice about a subject we never talked about, but which is a subject for all of us.

I have been trembling with you inside since I knew that you wanted to leave. How it may be – I have tried to understand. Because I follow you slowly but surely. How it may be when you have two weeks, when you have ten days, one week left.

On the one hand we are all sad and a bit horrified, but envy you for your courage. We envy you because you are free of the torment.

But we all miss you. Have a good trip Martin!

The final result

It would take a few days to realize. Out of the dream…
A few days ago came the press release from Biohaven itself that the drug is unfortunately ineffective. I was a bit surprised about the timing, we in Europe are a bit behind. However, I was not surprised by the whole thing. So now the dream is over, it would have been too good to be true.
I still have to understand what that means for me. I have definitely become worse in the last few months. So the plan to gain time with Verdiperstat didn’t work. First of all, I didn’t freeze the condition of that time and secondly, nothing was invented in the intermediate state that stops the progression.
The current thing that exists now will slow it down. If it goes well.
Still, the statement is like a punch in the gut. It was a glimmer of hope to buy time. True, there are other remedies and new studies – research continues thankfully. But for me, it’s already too late.
I was thinking the other day about what it would be like if I were magically healthy again. Everything to zero. There is hardly anything left of my things. I gave everything away, donated it, sold it, threw it away. I don’t even have a car and hardly any shoes or clothes. No kitchen utensils, no grill, no hammock and no lawn mower. No job and my apartment is also one I wouldn’t want as a healthy one. I don’t even have hair. In any case, it would be a completely different life. Maybe I would go into a monastery? Or write a book? In any case I would have to start from scratch. Not so bad.
Now I see that most people waste themselves on unimportant things, spend their money on nonsense, waste their time.
I see how my own life now consists of little highlights. Happenings I wouldn’t have even noticed before. Cake and coffee (as old women like it), a visit, an appointment… What is the important thing in life?
I think people should understand that they do not have unlimited time. That mistakes and dissatisfactions must be corrected immediately, not tomorrow. That you have to correct them at all and not accept something that is not good for you. That you have to dare to leave your comfort zone. We have one chance. I have thought a few times, if I could live again, I would be much more selfish. Think about yourself first and then about others. Who these others are doesn’t matter at first. We women in particular tend to put our own lives on the back burner for others. This has even something heroic. One has sacrificed oneself for someone. We must learn that selfishness is not evil, even if the word itself is negative. I think you would have to invent a new word here. To pursue one’s own interests and further development.
Because at some point the time is over and I am left only with my experiences, my stories.

Translated with www.DeepL.com/Translator (free version)

The long farewell to my voice and the stadium

Somewhere in the parental cellar it still be, my first recording, where I
sang full of fervor. 2 Little Italians was one of my favorites
I was 3. and this is probably my first memory.
I learned to speak in Kuwait. My first words were bilingual
” Yallah ” I shouted with growing enthusiasm from the balcony, urging everyone to hurry or move on.
That sang with 8 in the children’s choir, as a teenager there were nevertheless these Textheftächen: TOP- Schlagertextheftchen, they also helped to learn English.

I never have a loud or dark voice, even if in the stadium a besondres loud
Lehmann”.on Michi Trippels announcement: “with the No. 33 Mathias” followed. Or I me. about a foul play of the opponent with a Heeeeyyy. echauffierte.
On away trips where with the largest “choir of Cologne” 90 min was sung through. Or at night on the streets of Mauritius to the guitar John Denver and Phil Collins was warbled. Well, I always liked to sing.

With time my voice became quieter. For the first time it struck me that at the bakery at the counter the saleswomen have asked more and more often annoyed. You don’t have to worry about that at first.
Only when the first speech therapist said that we must also work on the volume, it penetrated my consciousness.
This LSVT has exercises that I have a hard time with.
I have inhibitions to shout AAAAAAA s loudly. Initially I could do it for 30 sec, now I am happy with 10 sec. This was more often my problem at work, I had to learn to shout louder in emergencies.

In the meantime, speech therapy is more strenuous for me than physio. After one unit of speech therapy nothing is going on. Not that anything else takes place, but without logo I can whisper even louder in the evening.
I can no longer cough willingly and I clear my throat more.
For my voice I bought a voice amplifier and a speech computer with eye control is requested. When it is really bad I use an app on the iPad.
Even if I can no longer talk on the phone or only breathe individual words into the phone, as I did the other day with my physiotherapist, my new iPhone arrived today 😎and the weekend before last I sang along with the anthem of the Effzeh without a voice. I was the first time this season and probably the last time in the Müngersdorfer stadium.

There was a wheelchair seat O4 height center line and Marga sat for free in the row in front of me.
So close to the pitch you can smell the grass and I always find it smells particularly fresh.
The Effzeh makes joy at the time, it was a great game.
But a long day, a late game and an uncomfortable wheelchair, brand health “insurance”, were to blame for the fact that it has missed me on the doorstep.
I managed to get up 7 steps and the rest of the way I was carried to bed step by step. You can’t expect anyone to do that.
So I will sing the hymn from the armchair without a voice.
Because I have always sung with pleasure.

MSA does not make me a better person, or rather, how this disease exhausts my mind

I was outside on Sunday – of course with my electric scooter, I can´t walk mainly outside, anymore. I have audio books with me, something to drink, sunglasses and baseball cap. I always go into nature, where there is less going on, and not in the city. I prefer to have my peace and quiet. Now I made the mistake of picking a sunny Sunday where half the world goes out. I certainly look like someone who doesn’t belong on there on my e-scooter.
On my way I met countless joggers and cyclists. Which spoiled my mood over time. A lot of amateur athletes – without me. I had two drawers full of sports clothes, my noble running shoes are together with dirt from better times, in the shoe rack. Somehow I don’t want to throw them away. Like the previous one. I have not brought over the heart to throw them away. In any case, now I go out and meet a bunch of unathletic people while cycling and running, and I am overcome by a new, unexpected and unknown aggressiveness, envy and intolerance, which I do not know from me, and I would love to tear these unathletic and misshapen people from their bikes and I find it so unspeakably unfair, the whole world can do it, only I can not. And I don’t want to be consoled with alternatives and compromises….
I wonder why something like this has to be, why does this miserable situation have to be made worse. It’s called pouring salt into the wound.

Furthermore, I am now organizing my funeral, I want to take care of it and pay for it. Of course, that sucks. Flower arrangements and music request…I couldn’t care less…now I have to pick out an urn for my ashes. I know picking out shoes, or perfume. This is so surreal. The person from the funeral home who gave me nice advice and visited me home said when I entered my information, “Oh, I’m of the same birth year as you”. Why this statement has finished me, guess.

I also visited my old home the other day. I was looking forward to it and did not expect that it would test my nerves.
First of all, I noticed, that a lot has happened in that place since I “left”. I was with two friends who took care of me with love. We got coffee at the bakery where I used to shop. On “my” parking lot stands now a strange car.
For the way back I chose a P+R parking place as a meeting point not far from my old apartment. I don’t know so many possibilities near the highway. My old running route. I know every pothole there, so to speak. So many memories. What was stupid, we spent more time than I thought in that parking place because of traffic jams on the freeway. We were sitting on a bench in the late summer sun, my two friends chatting about trivia. I realized at that moment that those trivialities are now irrelevant in my life. Ouch. I’m too quiet and too slow to participate in a lively conversation between the three of us. At least without breaking the flow of the conversation.
I have to say that everything went well the night before. I got through the evening without any mishap. The three of us visited a beer garden, I sat stably on the wooden bench, I didn’t knock out my teeth with the beer glass and I ate a schnitzel without throwing schnitzel and fries at my table neighbors and myself. My schnitzel didn’t end up on the floor either, under the table.
This drive through my old home was stupider than I thought. Like visiting my old life only without me. So many memories. Too many. I was glad when it was over, I’ll never do that again either. This trip made me to an ungrateful person, I think my friends probably asked themselves “what has happened to her?”. At that moment they couldn’t please me anyway. I realized that I was not the same as before, tolerant, relaxed, sociable and patient, but much more thin-skinned and sensitive. I was glad to be back in my own home, to be able to close the door behind me and let my suffering run free. I am used to deal with everything myself.

What do I learn from this? MSA does not make me an simpler person, not a better one. I think for the people around me I am not an enrichment. Rather a challenge.

Translated with www.DeepL.com/Translator (free version)

My way

This is a topic that is rarely talked about, at this point as a warning to all, if you want to read on – it is about one’s own death and it is about active euthanasia.

There are many people who reject such a thing. If you have a partner, family and children. Then you live for them. Or you hold on to the belief. Well, if you have all that, I respect that too. I don’t want to judge all this, we live different lives. I don’t have all that, and I see it differently. I don’t regret that I am different from most people. 

I think about it – I think about many things – to what extent would be this a “giving up”. I just want to have this possibility to quit if I wish, I don’t lie down and wait for the end. For me it is good to have this possibility and now my head is free and I can concentrate on fighting against this disease. To be in good physical condition as long as possible, to be able to take care of myself as long as possible.

Where I didn’t have this possibility, the fear paralyzed me, because with this disease you don’t know what tomorrow can bring. Now it’s a little easier because I can quit, I could, I just don’t know if I want to.

On the one hand it is good that I had a rich life, I am glad about the world I saw, I am glad that I got to know the otherness of mankind. I am glad that I left my comfort zone, that I dared to do something. I have made some mistakes but I regret only what I have not done.

I have been living in the past for a long time. I live from my memories and in retrospect I see how great my life was.

So for me, it’s been a good way to clear my head. It’s such a miserable issue as living wills. As long as you don’t do that, it hangs over your head like Damocles sword.

Furthermore, I am in the process of arranging and paying for my funeral. That’s a little weird, too. Healthy people don’t deal with such things, they also think that they have plenty of time. But doing this is not only for sick people, because we all die. Sometime. I don’t want to leave any costs and work to my heirs and so I know for sure it will be the way I want it.

Admittedly, I’m glad when it’s all done. I can then take a breath and devote myself to the only important task: Fighting MSA!

Trip

I wanted to tell you about my trip… First of all, I am incredibly grateful to my AWO caregiver for making this trip with me, because I couldn’t have done it alone. And second, what you see up there in the picture is my former route to work. I drove along there twice a day for 8 years. I didn’t even notice how idyllic it is back then.

Besides, even though it was exhausting and full of excitement, I can recommend it to everyone. It is simply good to get out of the usual rut. Admittedly, I often wished to be within my four walls and in my bed, but in the end I was glad. 

I tolerated the trip well, I was afraid that we would have to stop every few meters because of my overactive bladder, but was not so, neither towards nor on the way back. Okay, I admit, as far as drinking is concerned, I rather held back. What can be helpful in the case, however, is a Euro key with which you can unlock any disabled toilet, for 23 euros is to have, requires a severely disabled ID. https://cbf-da.de/de/shop/euro-wc-schluessel/

We stayed in Bavaria just before the border, in a hotel that looks better in photos than live (funny, I know this from somewhere else…), but the bed was clean and we got breakfast.

The trip to Innsbruck was a bit exciting. We were a little late, traffic was heavy, but the way was beautiful. In Innsbruck, everything was a little different, Corona-conditioned was a little rebuilt and so the terrain was a little harder to get around. Parking was a bit adventurous.

So first I was a little disappointed because the professor himself was not there. I had been there too often for that, obviously. As a replacement, there was another well-known doctor from his team – and 3 young doctors, one of whom even could not speak German….- The doctor was there 2 years ago, when I was there for the first time and could remember me! All in all she is more satisfied with me than I am, but I wonder if she says that to everyone?

There were a lot of questions asked and a lot of examinations made. For me it was a little overkill, in a short time you are confronted with a lot of things that you can not do.

In any case I am not smarter, my questions were answered diplomatically, which I understand. Nobody can look into the future or make decisions for me. Yes, the course can increase in speed or slow down or even stop. So every new day remains a surprise for me.

The question, I want to go without Biohaven because of Modag can understand it, however, she cannot take the decision from me.

She also understands that I want to test for SCA 3. At the same time, she also recommends testing for SCA 17. Although my symptoms already look like MSA to her.

Innsbruck, München, Walchensee, Chiemsee, Ammersee

As I said, I’m no wiser now, but it’s good to talk to doctors for whom I’m not “terra incognita”. Like my health insurance, which has just rejected the permanent prescription, my condition is not on their list, that means my disease is not so bad….

Apart from the doctor’s visit, it was nice to see old friends and familiar areas. Any sentimentality I repress now. Seeing people and places from a time when I still had a life really hits one.

Travel plans

I am making preparations. I’m going to Bavaria tomorrow and I’m very happy. I was never homesick, for example when I left my birthplace, but I am now. Although I can say that I already have quite good here in Hessen, I have met some great people. And some strange ones too, unfortunately, but at least now I can choose myself who is around me.

I am very happy to see old friends and old places again. Of course the question creeps up on me “what if I accidentally meet my ex?” Munich is too big for that and he wouldn’t recognize me, so I can calm down again. A lot of heart race and bitter crying would be the end.

When I will see my old apartment, familiar areas… when I think about it, I could cry already. It’s all connected with thousands of memories….

It will be all right. I am worried if I will survive the trip health wise? My friends don’t know me that way either. I wonder how a conversation will look like now… In any case, I’m thinking about writing a “leaflet” for my friends, then we’ll all feel easier and we won’t have to talk about illness all the time.

The real reason for my visit is the tour to Innsbruck, to my old doctor who can be called “the Pope of MSA”. In former times this was of course no distance from Munich, now it is a small world trip. I am very grateful to my caregiver for driving me there!

What I expect from the visit with him? Of course not much, because he can’t do magic either. It is just good to talk to someone who knows, for whom I am not the exotic.

What I would like to know (among others) although I know that it is impossible to answer, is whether this rapid progression will continue. I have had last year a lot of stress, with my decision to move into the wrong residential group, and then the move, which was also associated with a lot of stress. I explained my regression back then with that and I hoped when I had all that behind me, I could train myself back up to the old level. No such luck. Since then it goes continuously downward, and I would like to know whether this stops? Or does it continue at the same speed?

So since then my gait, balance, speech, and energy have gotten significantly worse.

What I would like to clarify is the matter of brain donation – can I donate my brain abroad at all? Because I would give my sick brain to him.

Furthermore, I would like to ask him what he thinks about testing for SCA 3? Because I would like to do that. In that case I would have the plague and not cholera, but at least I won’t die from it. The symptoms of SCA 3 are very similar to MSA-C and in my case autonomic symptoms are quite limited, but cerebellar symptoms are more severe.

I would also like to ask what he thinks of my plan to stop using Biohaven for anle138b. (I hope that the trial will take place in my study center). . Because I have the same dilemma as Marion described the other day. I am participating in the Biohaven study, but I cannot report anything positive. The Americans are already done with the trial since last fall and all on the real agent – no one is reporting miracle stories. Of course it is also hard to tell if it helps or not, placebo or not, who knows how it would be without.

If you think of another good question, send it to me.

As I write this, I’m listening to a meddle from the 90s on Spotify, so from my youth. When I hear some tracks… that I danced to, sweated to at the gym, went to the concert… I associate music with memories. Pieces of music that I used to listen to so often, if I had known what was coming… Now “Children” by Robert Miles is playing, with which I recorded my very first CD-ROM…

Now first fingers crossed that my bladder takes the trip and we do not have to stop behind every tree because of 3 drops.